SPINAL CORD INJURY: HOW DO PEOPLE COPE?

by Patricia Ann Dorsett, B. Soc. Wk.

Submitted for the Degree of Doctor of Philosophy in the School of Social Work and Social Policy at the University of Queensland

March 2001

ABSTRACT

The purpose of the study is to explore the impact of spinal cord injury on the individual and the ways in which people react to and cope with the imposed conditions of a spinal cord injury over time. Contemporary research questions traditional concepts of adjustment and increasingly emphasises the complexity and multiplicity of factors, which impact on adjustment following spinal cord injury. Historically research in this field has largely focused on a narrow range of factors and psychological reactions to spinal cord injury. Traditional research approaches have largely studied the crisis period of adjustment while the injured individual is still in hospital highlighting factors that are predictive of positive adjustment outcomes.

Historically, a whole range of social and environmental factors has been neglected when the process of adjustment is considered. With few exceptions, the research has failed to adequately account for the complexities of the process and the vast array of variables that impact on adjustment. Thus the understanding of how adjustment is achieved is limited. The need for longitudinal research into the adjustment process has long been recognised in the field. In the Australian context research addressing the psychosocial aspects of adjustment following spinal cord injury has been extremely limited

This study has adopted a holistic approach, incorporating an ecological perspective of the coping process and recognising the complexity and range of issues which impact on the adjustment process. Spinal cord injury results in a disruption in the balance of life in the psychosocial, health and environmental life spheres. For the purposes of the study adjustment is conceptualised as the attempts to restore balance with these various life spheres. The approach adopted in this study acknowledges the strengths within the individual and the systems (physical and social) in which they live and function.

This is a study of 44 people who sustained a spinal cord injury and were discharged from hospital between November 1992 and March 1994, with data being collected from the

participants on five occasions over the three year period immediately following the participant's discharge from hospital. The study uses both quantitative and qualitative methodologies to examine the impact of the injury on the adjustment of the participants over time. Data was collected on a range of variables identified in previous research as impacting on the process of adjustment. These included demographic, health related, psychosocial and environmental variables. In addition qualitative data was collected utilising a life history approach to identify coping strategies and factors which impacted either positively or negatively on the overall process of adjustment.

A questionnaire was developed which incorporated measures of depression, life satisfaction, health-related concerns and problems of life as well as collecting data about environmental challenges encountered. Quantitative data was analysed using descriptive statistics and repeated measures procedures in the Statistical Package for Social Scientists (SPSS).

Thus the study addresses a crucial gap in the current understanding of the adjustment process by adopting a holistic approach that adequately addresses the complexities inherent in the adjustment process over time and accommodates the various life spheres in which the individual operates. It expands the current understanding of the process, by identifying variables that relate to successful outcomes and the strategies that are used to achieve these outcomes. The study further expands the understanding of the process of adjustment by examining the way in which the variables relate to and interact with each other and thus impact on the process.

A new comprehensive model of adjustment is developed from the data and discussed in relation to indicators for effective social work and rehabilitation practice. Multiple levels of interventions are identified reflecting the complexity and interactive nature of the factors impacting on adjustment.

The findings indicate that overall the respondents made a good adjustment to the disruption caused in their lives by sustaining a spinal cord injury. However a number of

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challenges, which confronted the respondents, were identified in the both the qualitative and the quantitative data. The respondents utilise a variety of coping strategies to overcome the barriers and challenges they confronted. The effectiveness of the coping efforts of the respondents is mediated by a variety of health and environmental factors in interaction with the intra-personal resources of the individual.

Thus the main findings from the study highlight the complexity of the adjustment process and the range of interacting factors that impact on the process. The findings further highlight the variety of individual responses to spinal cord injury and the unique influence of the individuals social and physical environments. Interventions focusing on the strengths of the individual, social networks, problems solving, environmental issues and social change are discussed. The importance of interventions targeted at both the micro (individual) level and the macro level (influencing social and cultural attitudes, policy and programs) are discussed.

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STATEMENT OF SOURCES
I declare that the work presented in this dissertation is to the best of my knowledge and belief, original except as acknowledged in the text, and that the material has not been submitted either in whole or in part, for a degree at this or any other university.

. March 2001

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ACKNOWLEDGEMENTS
The completion of my research and thesis has been a long journey. At times I doubted if I would reach the end of the journey. It has been wrought with many professional, family and personal challenges. Many aspects of my life and of other family members have been organised to accommodate my research endeavours.

Many other people have assisted and supported me in this project. In particular I would like to offer most sincere thanks and gratitude to following people and organisations.

Firstly I would like to express my gratitude to my supervisors, Dr. Robert Bland, Dr Margaret Shapiro and Dr Deborah Setterlund. Robert Bland encouraged me to pursue the course of research and provided valuable guidance in the conceptulisation and initial stages of the project. The support and advice from Margaret Shapiro have been invaluable in the analysis of the data and preparation of the thesis. I would also like to express my gratitude to Deborah Setterlund for her guidance and advice in relation to the qualitative aspects of the study.

My colleagues and co-workers at the Spinal Injuries Unit and the Social Work Department at the Princess Alexandra Hospital have been particularly supportive. In particular I would like to thank Dr Vernon Hill, Director Spinal Injuries (retired) and Ms Sue Cumming, Director of Social Work Services for their support, encouragement and confidence in me and the value of this research. Also Susan Booth and Patricia Fronek who took the time to read much of my work and offered critical advice and valuable insights.

Dr Tony Baglioni, Statistical Adviser to the Social Sciences group at the University of Queensland and Dr Diana Battistutta, School of Public Health, Queensland University of Technology, provided statistical support and advice.

The Queensland Spinal Research Foundation generously provided a grant, which allowed me to work on the research in a full time capacity for three months in 1997 and I am very appreciative of their generosity.

I thank my husband, Lawrence Dorsett and our two sons Luke and Peter, for the many sacrifices they have made to allow me to pursue this course of study. I especially thank Lawrence for his encouragement, commitment and patience throughout this project. Without his support I am sure the project would have faltered before it was completed. I am grateful for their support and love through the years it have taken to come to the end of the journey.

Finally I would like to dedicate this thesis to the respondents who gave so generously of their time and emotional energy to enrich our understanding of the adjustment process. They taught me much about courage, dignity and determination in the face of some of lifes biggest challenges. Although there were few direct benefits to the participants, they willingly gave of themselves to assist with the enhancement of future services for people who sustain spinal cord injury. I thank them for persevering with me through this long journey. My life is richer for the experiences shared with them.

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TABLE OF CONTENTS

Abstract........................................................................................................... i Statement of Sources ................................................................................... iv Acknowledgements ....................................................................................... v Table of Contents ........................................................................................ vii Table of Figures.......................................................................................... xiii Preface............................................................................................................ 1
Plan Of The Thesis.......................................................................................................... 5

Chapter One: Overview of Spinal Cord Injury......................................... 7

What Is Spinal Cord Injury? ........................................................................................... 7 Incidence of Spinal Cord Injury.................................................................................... 10 The Queensland Treatment Setting............................................................................... 10 The Role of the Social Worker ..................................................................................... 13 Summary ....................................................................................................................... 15

Chapter Two: Adjustment Outcomes and Psychosocial Trends Following Spinal Cord Injury.................................................................... 16
Historical Background and Research Concerns............................................................ 17 Depression..................................................................................................................... 20 Suicide........................................................................................................................... 26 Self-Neglect and Non-Compliance ............................................................................... 32 Hospital Readmissions.................................................................................................. 36 Marital Relationships .................................................................................................... 38 Employment.................................................................................................................. 45 Quality of Life............................................................................................................... 51 Follow-Up Studies ........................................................................................................ 59 Variables Influencing Adjustment ................................................................................ 63 Summary ....................................................................................................................... 66

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Chapter Three: Theoretical Understanding of the Coping and Adjustment Process .................................................................................... 68
Terminology.................................................................................................................. 69 Stress ......................................................................................................................... 69 Coping....................................................................................................................... 69 Adjustment................................................................................................................ 71 Coping With Sudden Onset Injury................................................................................ 72 Psychological Models ................................................................................................... 73 Psychoanalytic Ego Psychology ............................................................................... 73 Trait/Disposititional Models of Coping .................................................................... 74 Cognitive/Behavioural Models ..................................................................................... 76 Stage Theories............................................................................................................... 81 Sociological Theories.................................................................................................... 83 Ecological Models ........................................................................................................ 84 Implications for Adjustment to Spinal Cord Injury ...................................................... 86 Summary ....................................................................................................................... 88

Chapter Four: Methodology ...................................................................... 89

Overview and Research questions ................................................................................ 89 Study Design................................................................................................................. 91 Definition of Concepts.................................................................................................. 92 Qualitative Aspects of the study ................................................................................... 94 Qualitative Data Analysis ......................................................................................... 95 Quantitative Aspects of the Study................................................................................. 97 Measurement Considerations and Instruments ......................................................... 97 Analysis of Quantitative Data................................................................................. 103 Sample......................................................................................................................... 104 Attrition....................................................................................................................... 106 Data Collection and Management............................................................................... 107 Strengths and Limitations of the Research Strategy ................................................... 108 Summary ..................................................................................................................... 112

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Chapter Five: Who Sustains a Spinal Cord Injury? ............................. 114

Who Are the People Who Sustain Spinal Cord Injury?.............................................. 115 Age at Onset of Injury............................................................................................. 115 Gender..................................................................................................................... 116 Marital Status .......................................................................................................... 117 Educational Background of the Respondents ......................................................... 118 Income..................................................................................................................... 119 Cause of Injury........................................................................................................ 121 Level and Type of Lesion ....................................................................................... 122 Geographical Distribution....................................................................................... 123 Summary ..................................................................................................................... 124

Chapter Six: Disruption to Life Following Spinal Cord Injury........... 125

Model of Adjustment Following Spinal Cord Injury.................................................. 126 Sustaining a Spinal Cord Injury.................................................................................. 130 Disruption to Life Adjustment .................................................................................... 132 Loss of Physical Capacity........................................................................................... 132 Loss of Control ........................................................................................................... 133 Loss of Dignity ........................................................................................................... 135 Loss of Social and Familial Roles .............................................................................. 136 Depression................................................................................................................... 137 Suicide......................................................................................................................... 138 Summary ..................................................................................................................... 144

Chapter Seven: Strategies to Manage Disruption to Life ..................... 146

Strategies Used by the Respondents ........................................................................... 147 Hope........................................................................................................................ 147 Determination ......................................................................................................... 151 Keep Busy............................................................................................................... 153 Reconstruction of Meaning..................................................................................... 154 Constructing Benefit from the Experience ............................................................. 155 Making Downward Comparisons ........................................................................... 156 Why Me?................................................................................................................. 157 ix

Acceptance.............................................................................................................. 159 Religious Beliefs..................................................................................................... 160 Engaging in Social Action .......................................................................................... 161 Helping Others ........................................................................................................ 161 Make the World a Better Place ............................................................................... 162 Regaining a Sense of Control Over Life..................................................................... 163 Information Seeking................................................................................................ 163 Setting Goals........................................................................................................... 167 Reframing to Maintain a Positive Attitude ............................................................. 170 Summary ..................................................................................................................... 171

Chapter Eight: Factors that Interact With or Impact on the Effectiveness of the Coping Strategies .................................................... 172
Family Support............................................................................................................ 172 Support from Peers with a Disability.......................................................................... 176 Friends (Non-Disabled) .............................................................................................. 177 Community Support Services ..................................................................................... 179 Financial Resources .................................................................................................... 182 Compensation ............................................................................................................. 183 Employment................................................................................................................ 186 Mobility....................................................................................................................... 189 Access ......................................................................................................................... 190 Transport ..................................................................................................................... 193 Medical/Health Issues................................................................................................. 195 Summary ..................................................................................................................... 196

Chapter Nine: Adjustment Outcomes Following Spinal Cord Injury 199

Health Related Factors................................................................................................ 200 Degree of Disability................................................................................................ 200 Medical Problems ................................................................................................... 201 Hospital Admissions ............................................................................................... 202 Pressure Sores ......................................................................................................... 203 Environmental Factors ................................................................................................ 206 x

Income..................................................................................................................... 206 Living Arrangements .............................................................................................. 207 Equipment and Home Accessibility........................................................................ 208 Psychosocial Factors................................................................................................... 212 Education ................................................................................................................ 212 Employment and Work History .............................................................................. 213 Depression Outcomes ............................................................................................. 215 Life Satisfaction Scales........................................................................................... 218 Life Problems.......................................................................................................... 221 Self-Rated Adjustment............................................................................................ 223 Psychological Outcome Trends .............................................................................. 224 Summary ..................................................................................................................... 227

Chapter Ten: Discussion and Conclusion .............................................. 228

Overview..................................................................................................................... 228 Summary of Findings.................................................................................................. 229 Implications For Intervention ..................................................................................... 233 Disruption to Life........................................................................................................ 235 Loss of Physical Capacity....................................................................................... 235 Loss of Control ....................................................................................................... 236 Loss of Dignity ....................................................................................................... 238 Loss of Social and Familial Roles .......................................................................... 239 Emotional Disequilibrium....................................................................................... 240 Strategies to Manage Disruption to Life..................................................................... 242 Factors that Interact With or Impact on the Effectiveness of Coping Strategies........ 244 Social Support (Family, Disabled Peers, Friends and Community) ....................... 244 Financial Resources ................................................................................................ 245 Vocational Resources.............................................................................................. 246 Access, Mobility and Transport.............................................................................. 248 Health and Medical Issues ...................................................................................... 249 Crisis Interventions ..................................................................................................... 251 Counselling ................................................................................................................. 253 xi

Interventions to Enhance Linkages to Resources, Services or Opportunities ............ 255 Macro Interventions (Sytemic or Structural Change to Promote Inclusion and Equity) ..................................................................................................................................... 257 Advocacy ................................................................................................................ 258 Service Co-Ordination ............................................................................................ 259 Consultation ............................................................................................................ 261 Policy and Program Development .......................................................................... 261 Strengths and Limitations of the Findings .................................................................. 262 Recommendations for Future Reseach ....................................................................... 264 Conclusion .................................................................................................................. 265

Appendix One Life Satisfaction Questionaire..................................... 267

Factor Analysis - Life Satisfaction ............................................................................. 267

Appendix Two Problems Of Life Scale................................................ 271

Factor Analysis - Life Problems Scale........................................................................ 271

Appendix Three Study Questionaire ................................................... 272 Bibliography .............................................................................................. 282

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TABLE OF FIGURES Table 2.1: Suicide Studies in Spinal Cord Injured Populations ................... 28 Table 2.2: Employment Studies in Spinal Cord Injured Populations........... 48 Table 2.3: Quality of Life in Spinal Cord Injured Populations .................... 55 Table 4.1 Summary of Variables .................................................................. 98 Figure 5.1: Age at Injury............................................................................. 116 Figure 5.2: Marital Status at Discharge ...................................................... 117 Figure 5.3: Pre-Injury Educational Level ................................................... 118 Figure 5.4: Source of Income at Discharge ....117 Figure 5.5: Insurance or Litigation Claimants at Discharge .. 118 Figure 5.6 Cause of Injury .......................................................................... 121 Table 5.1 Cause of Injury Comparison....................................................... 122 Figure 5.7 Level and Type of Lesion.......................................................... 123 Figure 5.8 Geographic Distribution of the Sample..................................... 124 Figure 6.1: Model of Adjustment to Spinal Cord Injury ....127 Figure 9.1: Personal Care Requirements ....198 Figure 9.2: Number of Medical Consultations Over Time......................... 202 Figure 9.3: Number of Hospital Admissions Over Time ...203 Figure 9.4: Number of Pressure Sores Over Time ..................................... 205 Figure 9.5: Living Arrangements Over Time .205 Figure 9.6: Equipment Supply Over Time ................................................. 209 Figure 9.7: Home Accessibility Over Time ...207 Figure 9.8: Employment Status Over Time................................................ 213 Figure 9.9: CES-D Scores Over Time ........................................................ 216 Figure 9.10: CES-D Scores Over Time ...................................................... 217 Figure 9.11: Trend of Median CES-D Depression Scores Over Time ...215 Table 9.12: Mean Scores for General Satisfaction Over Time................... 219
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Figure 9.13: Mean Scores for Economic Satisfaction Over Time.............. 220 Figure 9.14: General Satisfaction Scores Over Time ................................. 220 Figure 9.15: Trend of Mean General Satisfaction Scores Over Time ....218 Figure 9.16: Problems of Life (Means) ...................................................... 222 Figure 9.17: Mean Self-Rated Adjustment Scores Over Time................... 223 Table 9.18: Determinants of Depression .................................................... 226 Table A1.1 Variable Loading Life Satisfaction Scale............................. 268 Table A1.2 Conceptual Fit of Variables - Life Satisfaction Scale ............. 269

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PREFACE
I would like to introduce this thesis by telling the reader a little about how I came to be interested in this area of research. I am very much a practice based social work practitioner with previous experience in family and child welfare and intellectual disability fields. I found myself working in the area of spinal cord injury rehabilitation almost by accident. I had been working in a temporary position at the Princess Alexandra Hospital when the social worker from the Spinal Unit resigned, and I was asked if I would fill in until a replacement could be recruited. Somewhat reluctantly I accepted the position and have been working in the area of spinal cord injury rehabilitation ever since. That was in May 1989.

My reluctance to accept the position in the Spinal Injuries Unit was based in my own prejudices and fears about what it would be like to experience a spinal cord injury and the resultant disability. When I first began working in the Spinal Injuries Unit I expected to encounter people who were experiencing the depths of depression. However what I encountered was in reality very different from my expectations. I found people who experienced a period of initial crisis but generally seemed to achieve very positive outcomes despite the severity of their disability. People were highly motivated and worked very hard to gain the physical skills necessary to live their lives from a wheelchair. On the whole the clients with whom I worked were returning home, taking up roles within their communities, returning to employment, and I even worked with some clients who were winning gold medals at the Olympics.

The positive outlook of the clients with whom I worked challenged my prejudices and fears. The atmosphere was anything but negative, and I found myself developing a deep respect for the strength of character and motivation that I observed in my clients. They taught me and continue to teach me much about the depth and quality of life. Their hope for a future and a satisfying life challenged my prejudices about severe disability. I loved the work and the people with whom I found myself working.

However I was acutely aware that there was a group of patients who did not seem to do so well. There was a group of patients who returned to hospital time and time again with medical complications related to self-neglect. There was a group of patients in the community who were severely depressed and socially isolated. Occasionally we would hear that one of the previous clients of the Spinal Unit had committed suicide.

I turned to the research literature to try to find answers to the questions forming in my mind. I was searching for an answer about how to deliver a better social work service to all of the spinal cord injured clients with whom I was working, but especially to those who were not coping so well.

When I turned to the literature, I discovered that much of the current understanding about the issues related to adjustment following spinal cord injury was influenced by historical and medical factors that were no longer relevant to the present day experience of the person with a spinal cord injury. As the quality of medical and nursing care had improved so too had the life expectancy of the person with spinal cord injury. For example only 50 years ago a person who experienced a spinal cord injury would have had a life expectancy of two years or less and institutional care would have been the norm. It would follow that most of these people would have experienced life as depressing.

Most of the existing research concerned with psychological consequences of spinal cord injury focussed on the role of depression in the adjustment process. Stage theories of adjustment dominated the literature. Little attention was paid to the enormous variation in individual response to this type of injury. The thinking of the day suggested that depression was one of the essential stages of the adjustment process so it was encouraged in most rehabilitation centres.

Concepts of depression borrowed from the field of mental illness were used to describe the "normal reaction to the abnormal situation that was represented by the onset of spinal cord injury. As a result a whole generation of rehabilitation staff were educated to

believe that depression was therapeutic and essential in the achieving of successful adjustment outcomes. These influences still impact on the current generation of rehabilitation health professionals and significantly influenced my own expectations of working in a spinal injuries unit. These influences had been reflected in my own formal training and had contributed to the prejudices I described above.

In the early stages of my work as the social worker in the Spinal Injuries Unit, other staff regularly made referrals to me because a patient was experiencing denial or was not accepting what had happened to them. Many times when I began working with these clients, I found a client who was living in the hope of continued recovery but was at the same time fully engaged in a rehabilitation program that would help them gain the physical skills necessary to live life from a wheelchair.

About this time I had the fortune to meet a man, who by any standards would be described as well adjusted. He had sustained a spinal cord injury as a child and had been in a wheelchair for more than 20 years. He had competed nationally and internationally in wheelchair sports. He held a senior executive position in a large international company. He was married and had four children. He was on the management committee of several organisations representing the needs of people with disability. He worked in the Spinal Unit as a volunteer peer support worker. This man, who I considered well adjusted, dropped a bombshell on all my ideas about adjustment when he announced in a patient education group that there was not a day in his life that he did not think about walking. This statement challenged everything I thought I knew about adjustment. Here was someone I considered well adjusted and yet he was living in denial of the reality of the permanent nature of his disability. How could this be?

This and other similar experiences led me to seriously question the traditional concepts of adjustment. My observations were that most people coped very well following a spinal cord injury but that there were some people who seemed to have a great deal more difficulty than others, particularly in the early stages following discharge from hospital. I began to question why some people seemed to make the transition more easily than

others. I began to ask what I could do as a social worker in a Spinal unit to assist with this adjustment process. These questions formed the basis of the study reported in this thesis. I recognised an issue in my clinical practice that led me to question the traditional concepts of adjustment following spinal cord injury.

The literature and existing research failed to adequately answer the questions that were arising from my practice. The clients with whom I was working demonstrated a remarkable capacity to adapt and get on with life. I believed that the key must lie in understanding the process of adjustment from their perspective in a way that was grounded in the reality of their experiences and moved beyond the academic research, which was emerging. A longitudinal study design using a combination of qualitative and quantitative approaches seemed to be the most effective way to investigate these questions. This study design allowed for the combination of scientific enquiry and a holistic approach, which acknowledged the unique body of insider knowledge held by those who sustained a spinal cord injury.

I commenced this study with the intention of developing a small research project that would assist me to deliver a better service to the clients with spinal cord injuries with whom I was working. As the planning progressed it became obvious that this was a much more ambitious project. I sought advice from academic advisors and was encouraged to enrol in a higher degree. Initially I rejected the idea because I just wanted to find out what I needed to do my job well. The academic advisors suggested that this had the potential to be an exciting and valuable study but that longitudinal studies especially with the resources we had available were at a high risk of never being completed. Initially I was encouraged to consider a cross sectional study because it was considered more containable. I remained convinced that a longitudinal approach would be the most effective and despite advice about the risks of never completing the study I pushed on, somewhat naively perhaps.

Well, it is completed! I am glad it has been done and I believe the data has the potential to significantly influence the way services are structured for people with spinal cord 4

injuries both here in Australia and internationally. The data generated in the study has a richness that could only be obtained through the commitment of a study over time and the willingness of the respondents to share their lives in such a personal way with the researcher. It has indeed been a privilege to share in the depth of experience of the respondents and I hope I have done them justice in telling their stories. I hope that it challenges the way we perceive rehabilitation services in the future.

PLAN OF THE THESIS This study explores the impact of spinal cord injury on the individual and the ways in which people react to and cope with the imposed conditions of a spinal cord injury over time. The investigation seeks to answer the following questions: 1. What are the effects of spinal cord injury in the psychosocial, health related, and environmental life spheres of the individual who sustains a spinal cord injury? 2. What are the processes of adjustment following spinal cord injury over time? 3. What variables relate to successful adjustment outcomes? 4. What strategies are used to cope with and adjust to a spinal cord injury? 5. How do people with spinal cord injury perceive their satisfaction with life and how does this perception change over time? 6. What are the practice and research implications for social work from these findings?

The thesis comprises ten chapters. Chapter One presents a brief overview of spinal cord injury with the aim of providing a context for the study. It describes the physical and emotional consequences of spinal cord injury as well as the treatment and rehabilitation provided for people who sustain spinal cord injuries in Queensland.

Chapter Two discusses the literature and current research knowledge concerning adjustment outcomes and the psychosocial trends following spinal cord injury. A number of indicators of adjustment are considered. These include the historical background, depression, suicide, self-neglect, hospital re-admission, marital relationships,

employment, quality of life and variables influencing adjustment. Chapter Three extends

the discussion by examining the literature concerning the theoretical perspectives of the coping process and the application to spinal cord injury.

Details of the study design and methodological considerations are presented in Chapter Four. Aspects of measurement, analysis and sampling are discussed.

Chapter Five presents the demographic date describing the cohort for the study. It establishes the representativeness of the sample and begins to describe some of the impacts of spinal cord injury on the lives of the respondents. Chapters Six, Seven and Eight continue to unfold the story of the impact of spinal cord injury by presenting qualitative data from the interviews. Chapter Six reports on the disruption experienced by the respondents as a result of their injuries and resultant disabilities. A new model emerging from the data is presented. The presentation of the qualitative data is structured around the proposed model. Chapter Seven outlines the strategies used by the respondents to cope with the impact of their injury and Chapter Eight examines the factors that impact on the effectiveness of the respondents coping efforts.

Chapter Nine presents the quantifiable adjustment outcomes of the respondents. It includes outcomes from the environment, health, and psychosocial life domains. Thus a comprehensive picture of the adjustment process and outcomes for the respondents is developed in Chapters Six to Nine.

The thesis concludes with an overview of the findings and a discussion of implications and intervention strategies for rehabilitation professionals and social workers. Recommendations for future research are made.

CHAPTER ONE OVERVIEW OF SPINAL CORD INJURY

WHAT IS SPINAL CORD INJURY? Spinal cord injury is a traumatic injury, which typically occurs suddenly and without warning. It has an immediate impact on all areas of the individuals physical and psychosocial functioning (Krause & Crewe, 1991b). Spinal cord injuries do not affect a person's intellectual ability or cognitive function unless a traumatic brain injury is also sustained as a result of the injury. Most people who experience spinal cord injury do not have a cognitive impairment. (Go, DeVivo, & Richards, 1995). Treatment and rehabilitation require lengthy periods of hospitalisation.

In medical terminology a spinal cord injury is defined as " the occurrence of an acute, traumatic lesion of neural elements in the spinal canal (spinal cord and caudia equina) resulting in temporary or permanent sensory deficit, or bladder dysfunction" (Thurman, Sniezek, Johnson, Greenspan, & Smith, 1995). A spinal cord injury occurs when pressure is applied to the spinal cord or the blood supply, which carries oxygen to the spinal cord, is disrupted. Injury to the spinal cord results in paralysis and loss of sensory function below the level of the spinal cord, which is injured (Spinal Injuries Unit Princess Alexandra Hospital, 1992).

The spine is a series of bones that run from the base of the skull to the pelvis to support the head and body. In a canal that runs the length of the spine is the spinal cord. The bones of the spine usually act as protection for the spinal cord (Dickson & Tonkin, 1987). The spinal cord consists of nerve fibres that carry messages between the brain and various parts of the body. In many ways the spinal cord is like a telecommunications cable. It connects the main communication centre (the brain) to branch offices (parts of the body) by telephone lines (nerve fibres) (Lindsey, 1999; Medical Rehabilitation Research and Training Center in Secondary Complications in Spinal Cord Injury, 1996). 7

When the spinal cord is damaged the nerves above the level of the injury continue to work, however, below the level of the injury communication is disrupted which can result in loss of movement, sensation (feeling), bowel and bladder control. The injury may also impact on the person's breathing, sexual function and ability to control body temperature (Burke & Murray, 1975).

The factors determining the extent and severity of the injury/disability are the area of the spinal cord that is damaged (i.e. the level of the lesion) and the amount of damage incurred. The spine is divided into four sections, the cervical (at the top closest to the brain), the thoracic, lumbar, and sacral areas. The closer the damage is to the brain, the higher the level of injury. The two major conditions that result from injury to the spinal cord are paraplegia and quadriplegia (also known as tetraplegia, which is the preferred medical term). Injuries to the cervical area of the spinal cord generally result in quadriplegia, which is the paralysis of all four limbs, hands and the trunk. Injuries lower in the spine (thoracic, lumbar or sacral areas) result in paraplegia and involve paralysis from the chest or waist downwards. There will be little or no feeling (sensation) or movement (motor function) in the lower limbs and the lower part of the trunk (Medical Rehabilitation Research and Training Center in Secondary Complications in Spinal Cord Injury, 1996).

The degree of impairment can vary greatly depending on the type of injury, usually classified as the completeness of the injury. This is the terminology used to describe the severity of the damage to the spinal cord. The terms either complete injury or incomplete injury are applied. In an incomplete injury some messages are still able to get through between the brain and the rest of the body. There may be some feeling or movement below the level of the injury to the spinal cord. Some people with incomplete injuries have a lot of sensation preserved but little or no movement below the level of their injury. Others have movement but little or no feeling. The degree of impairment can vary substantially in those who sustain incomplete injuries. For example some people with an incomplete injury may regain the ability to walk (either with or without aids)

while others may regain little or no functional movement but may have some preserved sensation in their lower limbs. Complete injuries are those in which all feeling and function are lost below the level of the injury to the spinal cord. It is as if the communication system between the brain and the other parts of the body is completely cut off. Thus spinal cord injuries can result in complete paraplegia or incomplete paraplegia; and complete quadriplegia or incomplete quadriplegia (Lindsey, 1999; Medical Rehabilitation Research and Training Center in Secondary Complications in Spinal Cord Injury, 1996).

The spinal cord nerve tissue is much like brain tissue in that it usually does not fully recover when damaged. Injuries to the spinal cord are often permanent and there is no cure for spinal cord injury (Burke & Murray, 1975).

Spinal cord injury is an unexpected injury and can happen to almost anyone. If you drive or ride in a car, play sport, or even take a walk down the street you are at risk. Spinal injury is no respecter of social class, gender, maturity or race.

The consequences of a spinal cord injury are an enormous physical, social and psychological trauma to confront an individual. The changes caused are lifelong and affect every aspect of a person's life. Paralysis results in wheelchair dependence for mobility. As described above control is lost over many normal bodily functions such as bowel, bladder and sexual functions. Persons with a spinal cord injury may be dependent on others for assistance with many tasks of daily living such as toileting, bathing, dressing, grooming, eating, community access, and recreational activities.

These changes frequently have profound effects on the spinal cord injured person's social relationships. Spouses, parents and significant others find themselves having to assume the role of nurse/carer. Friends are unsure how to relate or have trouble coping with the changes and may drift away. Barriers to usual social outlets can be further compounded if the community is not wheelchair accessible. Social and cultural attitudes to people with a disability can further exacerbate disadvantage experienced by the injured individual.

INCIDENCE OF SPINAL CORD INJURY Between 400-430 people sustain spinal cord injuries in Australia each year (Paraquad NSW, 1997). The age adjusted incidence rate for spinal cord injuries is estimated to be 14.5 per million of population in Australia (O'Connor, 2000). This estimate is based on data of injury rates collected by The Australian Spinal Cord Injury Register. Australia is the first country to implement a national register of spinal cord injuries (O'Connor, 1999).

Similar reliable data is not available from other overseas countries (National Spinal Cord Injury Statistical Center, 2000). In the United States no studies of overall incidence rates have been collected since the 1970's. Based on that study it was estimated that the incidence rate of spinal cord injury is approximately 40 cases per million of population in the USA (National Spinal Cord Injury Statistical Center, 2000). Several attempts have been made to estimate incidence rates in the United States but these have concentrated on limited geographical areas and utilised a variety of sampling and methodological approaches. Based on these studies incidence rates in the USA could range from 26.6 to 60 cases per million population (Go et al., 1995).

Approximately 80-100 new cases of spinal cord injury are treated in Queensland each year (Hill, 1994, 1995, 1996, 1997). The Australian Spinal Cord Injury Register has nearly 9,000 cases of spinal cord injury registered (O'Connor, 2000). It is estimated that up to 2,000 people with spinal cord injury live in Queensland. The incidence and prevalence rates reported above indicate that spinal cord injury is a relatively rare condition in the general population but the consequences of such an injury have a profound impact on those who sustain spinal cord injury and their families.

THE QUEENSLAND TREATMENT SETTING There are only six specialist medical and rehabilitation centres for spinal cord injury in Australia. The Spinal Injuries Unit located at the Princess Alexandra Hospital, a major tertiary, acute, teaching hospital in Brisbane, is the only spinal injuries unit in Queensland. The Unit is a highly specialised service co-ordinating acute, medical,

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surgical and rehabilitation services for people who sustain spinal cord injuries. It provides care for all persons who sustain a spinal cord injury in Queensland or northern New South Wales. Queensland Health funds the service as part of the public hospital system and patients are treated without cost to themselves. The Unit treats between 80-100 new patients with spinal cord injury per year. It is a 40-bed Unit with separate social work, physiotherapy and occupational therapy treatment areas. Patients are accommodated in four-bed cubicles with only curtains between the beds for privacy.

Referrals are received from the whole of Queensland and northern New South Wales, with a catchment population of over 3,500,000 (Office of Economic and Statistical Research, 2000). Queensland is a large State covering an area of approximately 1,728,000 square kilometres or an area equivalent to one fifth of the United States (Office of Economic and Statistical Research, 2000). This creates a number of issues because the Spinal Unit is remote from the homes of many of the patients whom it treats. This results in challenges both from a social perspective and for effective medical follow-up.

A multidisciplinary team consisting of medical staff, nurses, physiotherapists, social workers, and occupational therapists staffs the Spinal Injuries Unit. Each of these disciplines has a valued and respected role in the rehabilitation services provided. The disciplines work collaboratively to assist clients to maximise independence and facilitate the best possible adjustment following spinal cord injury.

The Spinal Injuries team is led by a medical specialist in Rehabilitation Medicine. The rehabilitation of the person who has sustained a spinal cord injury is a very specialised field. Medical and nursing staff address the complex range of medical problems that are presented by the injury. These include bowel, bladder and skin management as well as management of the many complications that can occur because of the spinal cord injury, such as autonomic dysreflexia, spasticity, chest infections, and kidney/bladder infection. There can also be a wide range of other injuries that can be sustained as co-morbidities in the accident, including wounds, broken bones, brain injury, or other internal injuries. The physiotherapist and occupational therapist assist the client to regain the physical and

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functional skills or learn alternative ways to accomplish tasks of daily living. The physical therapists assist the client to choose appropriate equipment to function effectively in the community and assess and make recommendations about home modifications. The social worker provides emotional support, counselling and advice about community resources available to the client.

The social worker often must act as an advocate for the client to community agencies in an economic environment of restricted resources. The social worker also plays a pivotal role in the co-ordination of discharge planning for the client and works extensively with the family and significant others as well as directly with the client.

When a person is diagnosed with a spinal cord injury anywhere in Queensland or northern New South Wales they are transferred to the Spinal Injuries Unit as soon as their medical condition is stabilised, usually within 24 hours of the injury. Clients are often involved in emergency medical evacuation from accident sites, which can be an additionally traumatic experience and frequently involves the use of helicopters. Once at the hospital they are exposed to a variety of complex diagnostic and medical procedures. Having been transported to Brisbane for treatment, they may be socially isolated, as well as traumatised, confused, frightened and in pain.

Once admitted to the Spinal Injuries Unit they are initially cared for in the Acute Care area of the ward. The Acute Care section resembles a small Intensive Care Unit and can be very busy and frightening when people do not understand what is happening to them. Once they are stabilised and no longer requiring intensive nursing care, clients are transferred to the main ward area where they start to progressively become involved in the rehabilitation program of the Spinal Injuries Unit.

People with quadriplegia level injuries are traditionally in the Spinal Injuries Unit from seven to nine months and people with paraplegia for four to six months (Hill, 1994, 1995, 1996, 1997). This length of hospitalisation can lead to a great deal of disruption in a person's life and social networks. Attempts are made to normalise the experience by

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encouraging the maintenance of familiar relationships and social networks through visiting arrangements and periods of leave from the hospital program. While these strategies are an essential part of the rehabilitation program they constitute a less than ideal situation for many clients, especially those who are far removed from their homes.

THE ROLE OF THE SOCIAL WORKER An exhaustive literature search revealed a dearth of articles that refer to the role of social work with people who have spinal cord injury. Some literature relating to social work in the disability field was identified and is considered relevant in general terms but social work literature or research that relates specifically to social work in the area of spinal cord injury is sadly lacking. This is the case despite the repeated overwhelming acknowledgement and evidence of the complex social and psychological issues to confront the individual who sustains a spinal cord injury (Craig, Hancock, & Dickson, 1999; Craig, Hancock, Dickson, & Chang, 1997; Duggan & Dijkers, 1999; French & Phillips, 1991; Gerhart, Johnson, & Whiteneck, 1992; Judd & Brown, 1988; Kennedy, Lowe, Grey, & Short, 1995; Kennedy & Rogers, 2000; Krause, 1998b).

All of the social work literature identified has been published more than ten years ago. The early Social work literature views the problems to be addressed as residing within the individual and interventions are largely tailored towards assisting the individual to adjust by dealing with self-image, grief and relationship issues. The wider issues of environmental barriers and social attitudes receive scant attention (Bertino, 1989; Bodenhamer, Achterberg Lawlis, Kevorkian, Belanus, & Cofer, 1983; Bracken & Shepard, 1980; Brackett, Condon, Kindelan, & Bassett, 1984; Buckelew, Baumstark, Frank, & Hewett, 1990; Chase & King, 1990; Craig, Hancock, Dickson, Martin, & Chang, 1990; Dew, Lynch, Ernst, Rosenthal, & Judd, 1985; Frank & Elliott, 1987, 1989; Gallagher, McKegney, & Gladstone, 1982; Green, Pratt, & Grigsby, 1984; Hohmann, 1975; Jochheim, 1983; Lilliston, 1985; Mayer & Eisenberg, 1982; Richmond & Metcalf, 1986). The importance of social support and the need for social integration were acknowledged in two social work articles in the mid 1980's but the main focus of 13

intervention remained on change within the individual (Lilliston, 1985; Mackelprang & Hepworth, 1987). The role and importance of social work in spinal cord injury rehabilitation is acknowledged in a description of paramedical aspects in the spinal injuries unit (McGibbon, 1987). The roles described include addressing practical issues, such as income maintenance, housing or equipment funding issues, counselling to mediate the effects of stress or grief reactions, referral to community agencies, family support, legal advice and finally the broad category of "restoring the balance between the patient and his environment" (McGibbon, 1987).

While social work has traditionally been accepted and valued as a member of the multidisciplinary team that treats people with spinal cord injury, the understanding of the role of the social worker has remained bound to traditional and limited casework roles and interventions (McGibbon, 1987). Oliver's work about the role of social work is quite confronting about this position (Oliver, 1983, 1996, 1991, 1993). To be effective social work practice must move beyond the individual model of disablement, to a place where disability is seen not as a result of physical impairment and psychological pathology, but rather as an interaction "between an impaired individual and an essentially hostile environment." (d'Aboville, 1993). While social work espouses concepts that are consistent with this view unfortunately we have remained bound in our practice by the medical model and traditional approaches to social work practice. Effective social work practice must grapple with and develop intervention strategies that address the complexities of the interacting factors that impact on adjustment outcomes for people with spinal cord injury. This will mean adopting more ecological approaches to practice that (1) enhance the intra-personal resources of the individual; (2) link people with resources, services and opportunities that optimise personal development (3) challenge existing systems that maintain the disabling environments of our society and social policy and (4) promote social and economic justice (Zastrow, 1998). This theme will be further developed throughout the thesis as the role of social work is further explored.

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SUMMARY This chapter has presented the etiology of spinal cord injury, an overview of the incidence of spinal cord injuries in Australia compared to overseas incidences, and a picture of spinal cord injury treatment and rehabilitation in Queensland. The role of social work in a spinal injury setting has been introduced. The following chapter will present a review of the literature relating to adjustment, outcomes and psychosocial trends following spinal cord injury. This is followed by a consideration of the coping and adjustment literature to facilitate the understanding of how adjustment occurs in relation to spinal cord injury in Chapter Three.

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CHAPTER TWO ADJUSTMENT OUTCOMES AND PSYCHOSOCIAL TRENDS FOLLOWING SPINAL CORD INJURY
The nature of spinal cord injury intuitively suggests that an individual will need to accommodate significant change in their lives and may have difficulty adjusting to such a catastrophic event. As discussed in the previous chapter spinal cord injury is a sudden onset traumatic injury, which results in enormous physical, social and psychological trauma for the individual. The changes caused are lifelong and affect every aspect of a person's life. Paralysis results in wheelchair dependence for mobility. Control is lost over many normal bodily functions such as, bowel, bladder and sexual functions. Persons with a spinal cord injury may be dependent on others for assistance with many tasks of daily living such as, toileting, bathing, dressing, grooming, eating, recreation etc.

These changes frequently have profound effects on the spinal cord injured person's social relationships. Spouses find themselves having to assume the role of carer/nurse. Friends are unsure how to relate or have trouble coping with the changes and drift away. Barriers to usual social outlets may be further compounded if the community is not fully wheelchair accessible. In fact the social model of disability would suggest that disability results from the societal response or lack of response to people with a physical impairment rather than the impairment itself (Oliver, 1996, 1993). This chapter will review the major themes and issues in the existing literature related to psychosocial adjustment following spinal cord injury and describe the current understanding of the adjustment process following spinal cord injury.

Much of the early literature based on clinical experience and observation has been questioned and is not necessarily substantiated by later empirical studies (Trieschmann, 1988). However findings of these early studies continue to influence attitudes of rehabilitation staff working with people with spinal cord injuries today. The assumptions of the early research had a strong influence on the research that followed and on the way our

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understanding of the adjustment process following spinal injury has progressed (Buckelew, Frank, Elliott, Chaney, & Hewett, 1991; Trieschmann, 1988). These historical factors are also considered in this chapter.

The literature review identifies a number of areas that are indicative of problems in the adjustment process. These include depression, suicide, self-neglect, hospital readmissions, marital relationships, employment and quality of life. Finally a number of follow-up studies and the variables identified as facilitating adjustment are discussed.

HISTORICAL BACKGROUND AND RESEARCH CONCERNS The literature concerning psychosocial adjustment to spinal cord injury is diverse and often inconclusive. Many of the early concepts of adjustment to spinal cord injury, such as universality of depression or stage theories of adjustment (Bracken & Shepard, 1980; Dunn, 1977; Guttman, 1976; Hohmann, 1975; Siller, 1969; Wittkower, Gingras, Merler, Wigdor, & Lepine, 1954) have not been supported by recent empirical studies (DeJong, Branch, & Corcoran, 1984; Frank, Elliott, Corcoran, & Wonderlich, 1987; Howell, Fullerton, Harvey, & Klien, 1981; Judd, Burrows, & Brown, 1986; Judd, Stone, Webber, Brown, & Burrows, 1989; MacDonald, Nielson, & Cameron, 1987; Trieschmann, 1988).

This may be to some extent due to historical factors that have influenced the focus and type of studies that were traditionally conducted in this area. People who experienced traumatic spinal cord injuries prior to the early 1940's had extremely limited life expectancy. Eighty to ninety per cent died within the first few weeks and those who did survive usually had a life expectancy of only two or three years (Trieschmann, 1988).

With improvements in medical and nursing fields, life expectancy increased. By the late 1940's medical professionals were estimating that life expectancy for those with spinal cord injury had increased to approximately 10 years and by the 1950's estimates had increased to 20 years (Trieschmann, 1988). Issues of medical care and physical rehabilitation were the primary concerns of researchers in the 1940's, 1950's and even into the 1960's. By the 1960's

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and 1970's further advances in medicine and the availability of expert nursing care meant that most people experiencing spinal cord injury could anticipate a near normal life expectancy (Trieschmann, 1988).

As life expectancy increased so did the expectations of those with spinal cord injuries. They began to search for greater satisfaction. People with spinal cord injuries returned to live in the community and no longer accepted institutional care as the only option available to them. They married, had families, and pursued further education and vocational opportunities (Trieschmann, 1988). A number of consumer driven organisations began to emerge which gave voice to people with spinal cord injuries and impacted on policy decisions in the disability field (Oliver, 1996; Oliver, 1991). It is only in the last two decades, as these trends have become firmly established, that researchers have focused on quality of life and the many adjustment issues confronting people with spinal cord injuries (Trieschmann, 1988).

Trieschmann concludes that: "Most (i.e. people with spinal cord injuries) have the will to live in the face of severe disability and exhibit a great determination to accept responsibility for their own lives. Living with a disability is physically demanding, emotionally frustrating, and financially depleting, yet the majority will live useful lives filled with accomplishments and failures, happiness and unhappiness. In essence, they are basically normal people who happen to have a physical impairment that requires a greater expenditure of energy to accomplish most daily activities..." (1988, p.5).

In essence, clinical experience confirms the above statement but it is recognised that the road to achieving the state described by Trieschmann is not always easy. The injured individual is confronted with their own physical and psychological response to spinal cord injury, as well as societal attitudes to disability and environmental barriers. In the Spinal Injuries Unit at Princess Alexandra Hospital staff have found that the period of adjustment is lengthy and that many patients experience difficulties in the initial period post discharge as they strive to re-establish their lives and accommodate the lifestyle changes that are a consequence of their disability. This clinical finding is generally confirmed in the literature 18

reviewed in this chapter but there is much debate as to how long this process takes, what factors facilitate or impede adjustment, and how it is achieved.

There is no doubt that many people with spinal cord injuries do make a very good adjustment to living with their disability over time, however this process can at times, be traumatic, to say the least. This is evidenced by the number of patients who require treatment for depression, or other emotional problems, the number of marital/relationship problems experienced, difficulties experienced with social integration, and medical complications resulting from self-neglect. These clinical impressions are confirmed in the literature reviewed in this Chapter.

The early research into adjustment following spinal cord injury was strongly influenced by poor medical prognosis and cultural attitudes towards disability. A whole body of research developed which was based on clinical observations and lacked scientific rigour. Essentially the early research described the adjustment process by focussing on negative aspects and problems. The research in the adjustment process and psychosocial processes has made substantial advances, particularly in the 1990s. However the early literature and research, although substantially discredited, has continued to influence the training and expectations of rehabilitation professionals (Buckelew et al., 1991; Trieschmann, 1988; Wortman & Silver, 1991).

It is vital that the understanding of adjustment moves beyond the identification of problems and identifying indicators of adjustment outcomes. We need to develop an informed understanding that has clinical applicability in facilitating the adjustment process in a way that is both empowering for the individual and addresses the social and environmental factors which complicate the process.

The developmental trends in the understanding of adjustment following spinal cord injury are highlighted in this chapter.

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DEPRESSION As life expectancy for people with spinal cord injury improved as a result of the medical and nursing advances following World War II, health professionals became increasingly concerned with the study of the psychological consequences of spinal cord injury. Depression has been the most frequently studied psychological variable following spinal cord injury (Elliott & Frank, 1996; Frank, Elliott et al., 1987; Trieschmann, 1988). The importance of depression in the coping process and even its incidence is a much-debated issue.

Stage theories of adjustment dominated the psychosocial literature about adjustment to disability from the 1960's and continued to have strong influence in rehabilitation fields until the mid 1980's (Elliott & Frank, 1996). Stage theories of adjustment to spinal cord injury consider that depression is one of the essential processes in the stages of adjustment (Trieschmann, 1988). It has only been in the last two decades that recognition has been given to the enormous variation in individual response to spinal cord injury (Elliott & Frank, 1996; North, 1999; Trieschmann, 1988, p 66).

It was a common assumption that all patients with spinal cord injury would experience depression (Bracken & Shepard, 1980; Stewart, 1977-1978; Wittkower et al., 1954). Wittkower and colleagues (1954) in their classic study added strong support to this theory, when they reported the finding that all 50 patients in their sample evidenced severe depression in the first months following their injury. Siller (1969) went on to argue that if spinal patients failed to display the symptoms of depression those professionals working with them should be concerned because: "A person should be depressed because something significant has happened, and not to respond as such is denial.... Mostly what is operating is denial of functional loss or of the social implications - a denial that one's life will likely sustain change in important respects. Because denial goes in the face of reality, there can be negative repercussions since the patient is not making the necessary adjustments to his situation." (Siller, 1969).

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The stage theorists described a number of phases that most patients passed through on their journey towards adjustment, but were unable to consistently agree as to either the nature, sequence, or number of these stages. Stage theories that postulated models of adjustment consisted of two (Guttman, 1976), three (Kerr & Thompson, 1972; Mueller & Thompson, 1950; Stewart, 1977-1978), and even five stages (Bracken & Shepard, 1980; Hohmann, 1975; Tucker, 1980). Despite the great variance in these studies the stages described were essentially considered by their authors to be fixed in order, and each stage was considered essential to achieve successful overall adjustment (Frank, Elliott et al., 1987).

All of the above studies postulate that depression is a necessary prerequisite for satisfactory adjustment and this view has strongly influenced contemporary thinking. These early studies were based on the researchers' clinical experience/impressions rather than on formal studies using objective standardised measures (Elliott & Frank, 1996; Trieschmann, 1988). In the 1980's the validity of these studies was seriously questioned due to a growing number of studies that raised concerns about the reliability of this method to correctly predict/assess patients' moods (Bodenhamer et al., 1983; Cushman & Dijkers, 1990; Krishman, Glass, Jackson, & Bingley, 1988).

It was found that staff working with spinal injured persons believed that depression is a natural response and an essential stage in the adjustment process. This was not unusual given the prevalence of this thinking in the early literature, as discussed above. These expectations may however bias what staff actually observe and taken to the extreme may actually create a 'self-fulfilling prophecy' that patients adopt in the rehabilitation setting (Cushman & Dijkers, 1990).

Patients own rating of their moods were compared with assessments made by staff involved in their care (Cushman & Dijkers, 1990; Dijkers & Cushman, 1990). It was hypothesised that staff would overestimate patients' level of depression but that this would vary between health care disciplines. Their study confirmed that staff did overestimate depression in spinal patients and that this trend was maintained despite the clinical experience of staff or frequency of contact with a given patient. Cushman and Dijkers did not however find any

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significant difference in the estimates of mood across disciplines in the rehabilitation team, including social work and psychology (Cushman & Dijkers, 1990; Dijkers & Cushman, 1990).

Similar results are reported in a study conducted at the Dallas Rehabilitation Center (Bodenhamer et al., 1983). It was found that spinal cord injured patients tend to describe themselves as less depressed than the staff working with them. Another study found that more experienced rehabilitation staff tend to exaggerate the distress of their spinal cord injured patients and these misperceptions tend to progressively worsen with length of clinical experience. It was further reported that the optimism of patients was under estimated (Ernst, 1987).

The reliability of studies relying on either staff's clinical impressions or patients self-report of mood and the validity of these methods to assess depression is subject to question (Bodenhamer et al., 1983; Cushman & Dijkers, 1990).

More recent empirical studies have shown that depression is not an inevitable or universal consequence of spinal cord injury (North, 1999). While the rate of clinical depression in the early stages following spinal cord injury is higher than the general population it is not a universal phenomenon (Howell et al., 1981; Judd et al., 1986; Judd et al., 1989; MacDonald et al., 1987).

In one of the early empirical studies it was reported that 22% of a sample of 22 had a depressive disorder (using the Schedule of Affective Disorders and Schizophrenia) but that only three experienced major depressive disorders six months post-injury (Howell et al., 1981). Note the small sample size in this study (Howell et al., 1981). Fullerton, Harvey, Klien and Howell (1981) expanded this sample from 22 to 30 and 30% were diagnosed with a severe depressive disorder (using the Schedule of Affective Disorders and Schizophrenia) that occurred post-injury. They reported the incidence of depression occurred in the majority of cases within one month post-injury and that all cases were resolved prior to discharge from hospital (Fullerton et al., 1981).

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In another study Frank and colleagues (1985) reported that 38% of their sample (n = 32) met the criteria for diagnosis of a major depressive disorder (using DSM-III criteria) and an additional six percent met the criteria for a mild depressive disorder.

In an Australian Spinal Rehabilitation Unit, Judd, Burrows and Brown (1986) identified clinical depression in nine (10.7%) of 84 consecutive admissions. A second study of the prevalence of depression following spinal cord injury found that "the majority of patients experienced mild and transient periods of low mood, which could be considered a "normal" response to the losses due to spinal cord injury" (Judd et al., 1989, p. 670). However 20% of the patients developed a major depressive illness (Judd, Brown, & Burrows, 1991; Judd et al., 1989). This study found similar rates of depression in people with paraplegia and quadriplegia, which does not support the hypothesis that the risk of depressive illness increases with the degree of disability (Judd et al., 1989).

A recent Portuguese study reported that during rehabilitation 60% of spinal cord injured patients developed depression and that depression persisted throughout the hospital admission for 33% of these patients (de Carvalho, Andrade, Tavares, & de Freitas, 1998). This study also found no differences in depression rates between people with quadriplegia and those with paraplegia. The high rates of depression reported in this study raise questions about the impact of different treatment environments and/or ethnic and cultural differences. However a recent Italian study reports only a 16% depression rate up to one year post injury (Scivoletto, Petrelli, Di Lucente, & Castellano, 1997). These conflicting findings are difficult to interpret.

The studies discussed above make an important contribution to advancing the understanding of the psychological consequences following spinal cord injury compared to the pre 1980's research. They adopted clinical definitions of depression and used empirical measures to document prevalence. They are significant in that they confirm that depression is not universal in spinal injured persons but are suggestive that it occurs in approximately 25 30% of cases. The early stage theorists appear to have made little or no allowance for the

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enormous variances in individual personality, coping abilities, past life experience, environmental factors or social situations.

However all of the above studies look solely at inpatient samples taken during the rehabilitation stage of treatment. One would expect that the incidence of depression and its severity might increase immediately following return to community living as individuals are confronted with the reality of their disability (Judd et al., 1986), but that in the longer term it would decrease as the process of adjustment progressed. The major advance of the 1990's research has been studies that address the relationship of depression and adjustment following rehabilitation and look at longer-term outcomes as well as the interaction of a number of factors.

In a 12-month longitudinal study of 36 patients over their first year post-discharge, it is reported that depression moderately increased immediately following discharge compared to an able-bodied control group but that within a year after discharge there were no significant differences (Richards, 1986b). This study stands out as one of the more optimistic in the literature that generally suggests a much longer period of adjustment (Frank, Umlauf et al., 1987) and seems to confirm the suggestion that depression may increase immediately following discharge from hospital but resolves in the longer term (Judd et al., 1986). In another follow-up study nearly half of the sample suffered from depression six months following discharge. Longer-term outcomes are not reported in this study (Pilsecker, 1990).

In one of the earlier studies of long term outcomes, Schultz and Decker utilised the Center for Epidemiological Studies - Depression Scale (CES-D) to measure for depression in a sample of 100 middle-aged people with spinal cord injury who were an average of 20 years post-injury. Depression was reported in 22% of the sample compared with 19% of the general population. They concluded that people living in the community with long term spinal cord injuries were not significantly more depressed than the general population (Decker & Schulz, 1985; Schultz & Decker, 1985). Once again this study supports the hypothesis that depression may abate in the longer term.

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Using empirical measures of depression MacDonald, Neilson and Cameron reported clinical depression in 15% of the sample and evidence of mild depression in 45% of the sample (1987). The sample for this study was an average of seven years post-injury. This finding is in conflict to the above two studies and seems to suggest that depression levels remain higher than found in the general population for up to seven years.

In the Baylor College of Medicine Life Status Study of a community based sample of people with spinal cord injury (n = 140) with an average time since injury of 10.5 years 31% of the sample were assessed to be at risk for clinical depression (using the CES-D) (Fuhrer, Rintala, Hart, Clearman, & Young, 1993). Significantly more women than men were at risk for depression in this study. These findings also suggest that depression levels continue to be significantly higher than found in the general population even in the long term for people with spinal cord injury.

In a recent Australian study of 31 people with spinal cord injury, 25% were depressed after the first year post discharge from hospital and there was no significant change at year two post discharge (Craig et al., 1999; Craig, Hancock, & Chang, 1994; Craig, Hancock, Chang, & Dickson, 1998b; Craig et al., 1997; Craig, Hancock, & Dickson, 1994a, 1994b; Hancock, Craig, Dickson, Chang, & Martin, 1993). Note once again the very small sample size.

It is unclear from the studies reviewed if a higher rate of depression occurs immediately following spinal cord injury or if depression rates abate among those who have been injured longer. The differing results reported may be due to methodological differences or differences between the samples studied (Jacob, Zachariah, & Bhattacharji, 1995). However it is clear from this review of the literature, that depression is a problem for a substantial subgroup of individuals with spinal cord injuries, perhaps up to 30% of the spinal cord injured population. The incidence of depressive illness in people with spinal cord injury is higher than that of the general population and remains high for some years following injury. The literature highlights the complexity of interacting factors that contribute to depression following spinal cord injury including physical, emotional and environmental

25

factors, but overall contributes little to answering the coping questions raised by Trieschmann (1988).

"Have professionals seen more distress and psychological difficulty than is actually present? Have professionals uncritically applied terms and theoretical concepts from the field of "mental illness" to describe the "normal reaction to an abnormal situation" that the onset of SCI represents? ... Have professionals, in clinical interactions, placed disabled persons in a "Catch 22" position? If you have a disability, you must have psychological problems: if you state that you have no psychological problems, then this is denial and that is a psychological problem?" (Trieschmann, 1988, p. 70).

Depression is often likened to the process of grief following loss. Spinal cord injury is not however a resolving condition. The losses are permanent and the lifelong stresses related to coping with a serious disability (e.g. physical limitations, emotional adjustments, financial consequences, architectural barriers, vocational restrictions, and social attitudes) are recurring and ongoing reminders of the losses. These differences between grieving processes and living with a lifelong disability may explain some of the discrepancies reported above. The complexity and large number of variables that impact on depression outcomes creates methodological problems in the study of depression and the factors that predict or mediate against depression following spinal cord injury.

SUICIDE Suicide is a leading cause of death following spinal cord injury. While deaths resulting from medical complications have decreased dramatically over the last 20 years (Trieschmann, 1988, p.1-4) deaths resulting from suicide have not declined (DeVivo, Kartus, Stover, Rutt, & Fine, 1989; Hartkopp, Bronnum-Hansen, Seidenschnur, & Biering-Sorensen, 1997). There are a number of studies that suggest that the suicide rate for people with spinal cord injury is significantly higher than that of the general population and perhaps even on the 26

increase (Geisler, Jousse, Wynne Jones, & Breithaupt, 1983; Harris, Barraclough, Grundy, Bamford, & Inskip, 1996). Suicidal thoughts are a commonly reported reaction soon after sustaining a spinal cord injury or when setbacks occur later in the adjustment process (Cook, 1982; Pinkerton & Griffin, 1983). This picture would suggest that there is a group of individuals with spinal cord injury who have difficulty adjusting to the consequences of their injury.

There are a growing number of studies on mortality, causes of death and suicide following spinal cord injury but the results are difficult to compare. The studies have looked at samples over periods of time that range from one to two years, to more than 20 years. This makes it difficult to identify trends or to make comparisons. Medical follow-up and treatment practices vary in different countries that contributes to the difficulties in comparing results. The findings of the reported suicide rates are summarised in Table 2.1 which follows.

Suicide following spinal cord injury is found to occur 3.3 to 4.9 times more commonly than would be expected in the general population in the USA (Charlifue & Gerhart, 1991; DeVivo, Black, Richards, & Stover, 1991; DeVivo, Black, & Stover, 1993; Whiteneck et al., 1992) and accounts for 4% to 13% of all deaths in the spinal cord injured population (DeVivo et al., 1989; Geisler et al., 1983; Nyquist & Bors, 1967). In the overall USA population this compares with 1.4% of all deaths being attributed to suicide (Dijkers, Abela, Gans, & Gordan, 1995).

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Table 2.1: Suicide Studies in Spinal Cord Injured Populations

CITATION Tribe (1963) Nyquist and Bors (1967) Jousse, Wynne-Jones, & Breithaupt (1967) Geisler, Wynne-Jones & Breithaupt (1977) Geisler (1983) DeVivo et al (DeVivo et al., 1989) DeVivo, Black, Richards & Stover (1991) Charlifue & Gerhart (1991) Judd & Brown (1992) Hartkopp et al (1998) Craig, Hancock & Dickson (1999) Dijkers, Abela, Gans & Gordon (1995) Kennedy, Rogers, Speer, & Frankel (1999) STUDY PERIOD Published 1963 1946-1965 1945-1966 1945-1973 1973-1980 1973-1980 1973-1984 1957-1987 1984-1989 1953-1990 1991-1992 1973-1992 1951-1992 COUNTRY England USA Canada Canada Canada USA Multicenter USA Multicenter USA Australia Denmark Australia USA Multicenter England SAMPLE SIZE 965 1501 1,478 5,131 9,135 5,200 342 888 58 14,312 137** NUMBER OF DEATHS 150 258 203 428 194 459 796 489 _ 236 1 923 33 NUMBER OF SUICIDES 1 21 7 18 21 59 50 42 6 23 0 55 8 SMRS FOR SUICIDE _ 2 -5 _ 3.3 4.9 4.8 _ 4.6 0 _ _ PERCENT OF DEATHS 0.7% 8.1% 3.5 4.2 10.8% 13.1% 6.3% 9% _ 9.8% 0% 6% 24%

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In a study of persons injured between 1973 and 1980 (n = 1478) researchers found that people with complete quadriplegia committed suicide at four times the rate of the general population, and the rate for people with incomplete paraplegia was three times that of the general population (Geisler et al., 1983). Rates for other groups with spinal cord injury were also found to be one and half to two-times greater than that of the general population. These authors make a comparison to a similar study conducted by themselves in 1973 and indicate that there was a marked increase in deaths due to suicide between 1973 and 1983. They report that deaths attributed to suicide accounted for 4.2% of all deaths in their 1973 sample but suicide accounted for 10.8% of the reported deaths in the 1983 sample (Geisler et al., 1983; Geisler et al., 1977). They conclude that the incidence of suicide following spinal cord injury is increasing.

In relation to suicide in the general population there are a number of risk factors or high-risk groups that have been identified. Individuals who suffer from mental illness, particularly affective disorders such as depression or alcoholism are recognised as being at greater risk of committing suicide (Balon, 1987; Gunnell & Frankel, 1994; Hawton, 1987). Demographic variables include gender (higher rates for males), race (being white), age (rates increase with age but are also high among adolescents), marital status (being single or divorced), religion (higher for Protestants, low for Catholics or Muslims), unemployment, and living in high population densities (Goldberg, 1987; Hartkopp et al., 1998). Charlifue and Gerhart (1991) reviewed 5,200 hospital records of persons with spinal cord injury to identify risk factors associated with suicide. They identified a combination of demographic, psychological, and psychosocial factors as being positively correlated with suicide following spinal cord injury. These included depression, hopelessness, alcohol abuse, guilt, and previous suicide attempts, as well as demographic variables such as age (being older at time of injury), being Protestant, being white and the psychosocial variable, family fragmentation (Charlifue & Gerhart, 1991). These findings are similar to the risk factors for the general population.

Judd and Brown (1992) presented case studies on a group of six Australian spinal cord injured persons who were known to have committed suicide and reported similar findings

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including, depression, previous history of difficulties coping with loss, alcohol or drug abuse and being male. In a 1998 Danish study nearly 35% of the suicides were committed by people who had a diagnosed psychiatric condition prior to their injury and 22% had prior suicide attempts (Hartkopp et al., 1998).

From the studies reviewed it is possible to identify a number of factors that correlate to increased suicide risk. These include psychiatric illness, particularly depression and schizophrenia (DeVivo, Black et al., 1991; Hartkopp et al., 1998; Judd & Brown, 1992), being single (Wilcox & Stauffer, 1972), being white, being older at the time of injury, having a previous history of suicide attempts, family fragmentation and alcohol or drug abuse (Charlifue & Gerhart, 1991). The usefulness of these predictors is difficult to apply for screening purposes in clinical settings because they are more applicable to the population as a whole than to a single individual. Many people who will never commit suicide evidence the same risk factors as those who will. The identification of suicide risk factors is complex and requires further study.

The studies discussed above also raise concern for the situation of those who sustain paraplegia level or incomplete injuries and especially those who have good physical recovery. In the DeVivo, Black, Richards, and Stover (1991) sample, suicide was the leading cause of death for all people with complete paraplegia (14.7%), and second leading cause of death for these with incomplete paraplegia (9.2%). The Hartkopp study (1998) clearly demonstrates that those with incomplete injuries and good physical recovery are at a high risk of suicide with 28% of suicides occurring in this subgroup of her sample. The finding that suicide rates for those with paraplegia are higher than other subgroups of spinal cord injured populations is further confirmed in a number of studies (Charlifue & Gerhart, 1991; DeVivo, Black et al., 1991; DeVivo et al., 1993; Dijkers et al., 1995; Hartkopp et al., 1998). This is a counter-intuitive finding and does not support the common belief that there is a correlation between degree of disability and psychological disturbance (DeVivo, Black et al., 1991; Hartkopp et al., 1998; Trieschmann, 1988).

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From the studies reviewed in this section it is also noted that the first five years following spinal cord injury are the time of greatest risk for suicide. DeVivo, Black, Richards and Stover (1991) report the highest SMR for suicide in their study occurred between one and five years post injury. The Charlifue and Gerhart study (1991) found that 50% of the suicides in the sample were committed within three years of the onset of spinal cord injury; 76% took place within four years. Hartkopp and colleagues (1998) report that more than half of the suicides occurred in the first six years following injury with a decreasing number of deaths by suicide for each following year. Dijkers, Abela, Gans and Gordan (1995) report that 80% of suicides occurred in the first five years following injury with an additional 16% occurring in the following five years. After the first ten years following injury the suicide rates for spinal cord injured populations are similar to that of the general population (Dijkers et al., 1995). This finding suggests that the first five years following injury may be the most problematic in the adjustment process.

It is generally accepted that suicide is under reported. Only overt suicides can be quantified. Some deaths that are declared accidental may actually be suicides (Hartkopp et al., 1998; Kewman & Tate, 1998). A number of researchers have also expressed the opinion that the reported suicide rates may have been even higher if the issue of self-neglect (passive/indirect suicide) was considered (Geisler et al., 1983; Hartkopp et al., 1998; Kerr & Thompson, 1972; Kewman & Tate, 1998; Nyquist & Bors, 1967; Seymour, 1955; Wilcox & Stauffer, 1972). A review of the literature relating to the issue of self-neglect is discussed later in this chapter.

It should be noted that a substantial number of these studies were conducted at hospitals that largely serve American veterans and that their samples were either wholly or substantially composed of veterans. These studies may contain certain biases because the financial situation of American veterans may be much better than the general population of spinal injured in the United States (Trieschmann, 1988).

The accumulated data on suicide in the spinal injured population is of concern. The findings indicate an increased risk of suicide in the spinal injured population as compared with the

31

general population, especially in the first five years following injury. This would lead us to the assumption that the first five years are the most crucial in the adjustment process. It is these processes that we need to understand if we are to develop strategies to enhance coping skills and improve quality of life.

SELF-NEGLECT AND NON-COMPLIANCE Self-neglect is considered an indicator of adjustment difficulties in the spinal cord injured population. Self-neglect or non-compliance with medical regimes can result in life threatening medical complications following spinal cord injury (Johnson, Gerhart, McCray, Menconi, & Whiteneck, 1998; Krause, 1996b; Liguori, Cardenas, & Ullrich, 1997; McKinley, Jackson, Cardenas, & DeVivo, 1999; Pruitt, Wahlgrent, Epping-Jordan, & Rossi, 1998). Heilporn suggests that an "ectodermic syndrome" exists in which an inability to come to terms with disability and loss of autonomy is expressed more behaviourally than verbally and results in neglect of self care (1991). Trosper proposes that there may be a group of individuals who because of prior socio-economic disadvantage, do not have adequate life skills, self-esteem or a framework from which to develop coping skills or appropriate problem solving skills to be able to live successfully with a spinal cord injury (1998). The resulting self-neglect behaviours result in medical complications, such as pressure sores and urinary tract infections, that have serious implications for the quality of life, health and even survival of the injured person.

At the Burwood Spinal Injuries Unit in Christchurch, New Zealand, a nine percent selfneglect rate is reported in a study population of 400 consecutive patients (MacLeod, 1988). Three groups who display self-neglect behaviour following spinal cord injury are identified. The first and most common group is composed of those who are experiencing difficulties adjusting to disability, in that they do not accept responsibility for learning about and applying the necessary actions to prevent pressure sores. Secondly those with depression display self-neglect behaviour which may in part be the result the lowering of mood and a negative attitude towards suggestions of behaviour change. Thirdly a group of patients defined as presenting "existential self-neglect which reflects an unspoken desire to die was

32

recognised. For the first two groups it is suggested that various psychosocial management strategies may be effective, but emphasises the importance of respecting the patients' autonomy in relation to the latter (MacLeod, 1988). This third group raises a number of ethical issues for rehabilitation professionals (Maynard, 1996). Clinical experience of staff at the Princess Alexandra Hospital confirms findings such as these.

However, Macleod's study may over estimate the incidence of self-neglect in the overall spinal injured population because more than 75% of his sample consisted of patients seeking medical treatment (1988). It would follow that those who were not experiencing complications would not be represented in the sample. Thus caution should be exercised in making any generalisations from this study.

In the Australian setting, Judd, Burrows and Brown (1986) also discuss the issue of selfneglect as one of the common problems in the management of spinal cord injured patients. They suggest that it is often a result of undiagnosed and untreated depression, while Macleod (1988) argues that it is more frequently a symptom of an adjustment crisis.

The occurrence of pressure sores is one of the most common indicators used in assessing self-neglect (Anderson & Andberg, 1979; Davidoff et al., 1990; MacLeod, 1988). This is because it is largely an avoidable complication provided one understands the mechanics of his/her own skin care and is vigilant in pressure management. Pressure sores develop because of continuous pressure to the skin, and are exacerbated by moisture, sheering forces (as in transferring from a wheelchair), poor nutrition and cigarette smoking (McKinley et al., 1999).

Pressure sores are the most common medical complications in the first year following discharge from hospital, with an incidence rate of 15% which steadily increases in the following years to 26% in year 20 (National Spinal Cord Injury Statistical Center, 1995). Some studies have reported even higher prevalence. For example one study of a community sample of 140 people with spinal cord injury (mean time since injury 10.6 years) found that

33

33% had at least one pressure sore at any one time and 14% had severe pressure sores (Fuhrer, Garber, Rintala, Clearman, & Hart, 1993).

In 1955 Seymore (1955) coined the phase "physiological suicide" to suggest a link between psychological well-being and self-care and that might actually reflect a wish to die. He pointed out that many deaths were avoidable with responsible self-care. This was one of the first links between poor emotional adjustment and mortality. The relationship between personal adjustment and survival following spinal cord injury is now well established (Krause, 1991, 1996b, 1998b; Krause & Crewe, 1991b).

Certain attitudes or personality traits may constitute risk factors for the development of pressure sores. Anderson and Andberg (1979) studied 141 persons with spinal cord injury, who had lived an average of 10.5 years post-injury to assess the links between psychosocial factors and the occurrence of pressure sores. They found that the incidence of pressure sores in people with paraplegia and quadriplegia was the same but strangely people with paraplegia required more days of treatment due to pressure sores than those with quadriplegia. This implies greater severity of the sores and longer delays in seeking treatment for the condition. Even more surprising in their study is that people with paraplegia who actually received assistance with their skin care required the most days of treatment for pressure sores. Those who took responsibility for their own skin care even if not fully independent and who expressed satisfaction with their life had the lowest risk of developing pressure sores. They concluded that the incidence of pressure sores could not be directly related simply to the mechanics of pressure relief but that psychosocial factors played a significant role in determining the incidence of pressure sores (Anderson & Andberg, 1979).

Davidoff and colleagues (1990) attempted to overcome the methodological problems associated with the above studies by controlling for equal exposure to risk of medical complications. They examined the medical records of 88 consecutive patients completing their rehabilitation program during the first twelve months following discharge from hospital. As in other studies quoted, they found a high readmission rate for patients with potentially preventable conditions. These accounted for 34% of all readmissions in this

34

study. Although they did not attempt to identify specific psychosocial variables they did conclude that psychosocial factors might play as large a part as neurological level or functional level in influencing readmissions particularly in relation to potentially preventable readmissions.

A number of psychosocial variables have been found to be related to the occurrence of pressure sores and subsequent death. The research by Krause (1991; 1996b; 1998d, 1998e; 1992) has made a major contribution in this area. He used prospective measures of adjustment to correlate with survival status several years later. Survivors were found to demonstrate superior adjustment (Krause, 1991, 1996b; Krause, 1998c, 1998f, 1998e; Krause & Kjorsvig, 1992). In a study specifically designed to explore correlations between secondary conditions including pressure sores and subjective well-being it was found that pressure sores were most highly related to emotional distress including depression (Krause, 1998d). Depression can be both a factor contributing to the development of a pressure sore and a consequence of the sore. This study also reported that pressure sore occurrence was significantly related with lowered well-being in finances and living circumstances as well as sexual and interpersonal well-being (Krause, 1998d). Krause (1998c, 1998d) strongly encourages routine assessment for the interactions between subjective well-being and the development of secondary medical conditions such as pressure sores, with appropriate psychosocial interventions where necessary.

After reviewing a number of studies on the incident of pressure sores Trieschmann (1988, p. 272) concludes, "acceptance of responsibility for one's self-care seems to be the prerequisite for adaptation to the physical changes that spinal injury entails". She found that psychosocial issues were particularly important in predicting incidence of pressure sores in the early years with spinal cord injury and that the most significant indicators were social isolation, a lack of purposeful activity, and lack of goals. (Trieschmann, 1988). These variables are confirmed by the more recent studies by Krause (Krause, 1996b; Krause, 1998c; Krause, 1998e).

35

The literature here again confirms that the initial period following spinal cord injury can be the most troublesome. The incidence of avoidable medical conditions seems to be indicative of a lack of acceptance of the lifestyle changes required to cope successfully with a spinal cord injury and may in some cases represent passive suicide.

HOSPITAL READMISSIONS High rates of hospital readmission following spinal cord injury are well documented in the literature with the reported incidence ranging from 19% to 57% (Davidoff et al., 1990; DeVivo, Richards, Stover, & Go, 1991; Ivie & DeVivo, 1994; Johnson et al., 1998; Meyers et al., 1989; Meyers et al., 1985; Samsa, Landsman, & Hamilton, 1996; Tate & Forchheimer, 1995). Recurrent or lengthy hospital admissions are disruptive to a person's ability to maintain meaningful family or social relationships and impacts on participation in vocational and leisure activities. An individual's overall quality of life can be significantly reduced as a consequence (Ivie & DeVivo, 1994).

In a study of 96 participants who ranged from one to 41 years post injury 57% had been admitted to hospital at least once in the year prior to the study (Meyers et al., 1985). Another US study found that 26%, of a sample of 2305 people with spinal cord injury, were hospitalised during the follow up year (Ivie & DeVivo, 1994). Participants in this study ranged from one to seven years post injury. Comparison of cross sectional studies is difficult because other research suggests that hospital readmission rates decrease as time post injury increases (Johnson et al., 1998; Samsa et al., 1996).

It is suggested that hospital readmission rates are high in the early years following injury. DeVivo and colleagues (1991) reported a readmission rate of approximately 33% in the first and 36% in the second year post discharge. A rate of 51% rehospitalisation in the first 2 years post discharge was reported by Tate and Forcheimer (1995). Other studies report a 27% (Johnson et al., 1998) and a 39% readmission rate in the first year post discharge from hospital (Davidoff et al., 1990). The Davidoff group (1990) classified 34%

36

of these admissions as potentially preventable. This may relate to the issues of self-neglect discussed above.

There is little data on hospital readmission rates for individuals with spinal cord injury in Australia and existing studies are hampered by small sample sizes (Craig et al., 1999; Pershouse, Cox, & Dorsett, 2000). An Australian study evaluating the effectiveness of a Cognitive Behavioural Group Treatment in a spinal injuries rehabilitation program, reported a readmission rate of 41% for the treatment group (n = 28) and 55% for the control group (n=31) (Craig et al., 1999). A Queensland study (n = 68) to quantify the incidence of hospital readmissions following spinal cord injury found that 31% (n = 21) of the participants had been readmitted to hospital at least once in the first two years following discharge from hospital for initial rehabilitation (Pershouse et al., 2000). There were however, 60 separate episodes of hospital admission, with an average length of hospital stay (LOS) of 10 days (range = 1 to 120 days). This study attempted to classify admissions as related to the spinal cord injury or not, as well as preventable or not preventable. Eighty-one percent of LOS was accounted for by conditions directly related to spinal cord injury and 21% of LOS was accounted for by conditions classified as preventable. The most common reason for admission for preventable conditions was for pressure sores, which accounted for 25% of LOS. No statistical difference in age or severity of injury was found when participants who were admitted to hospital were compared to those who were not (Pershouse et al., 2000).

It is unknown whether the variations reported in the studies reviewed above are due to real differences in hospital readmission rates, methodological differences, or disparities in treatment practices. However, the impact of medical complications and consequent hospital admission on the individuals quality of life coupled with the potential avoidability are issues which warrant further investigation (Johnson et al., 1998).

The literature suggests that the highest incidences of hospital readmissions occur in the first three to five years following spinal cord injury and reduce with increasing time since injury. This may indicate that the person with spinal cord injury becomes more adept at

37

managing their condition, or becomes better adjusted, or alternatively those who are at risk of death resulting from self-neglect may no longer be represented in the samples by five years post injury.

MARITAL RELATIONSHIPS Clinical impressions would lead to the assumption that when one partner in a marriage sustains a spinal cord injury the spouse must make a number of adaptations within their relationship. The literature gives few clues as to how these adaptations are accommodated and if the subsequent stresses have any long-term effect on the relationships. Divorce rates are sometimes taken as an indicator of adjustment in marriage. Divorce rates should not be considered in isolation however, because they say little about the quality of the relationships that do not terminate in divorce. Marital satisfaction can not necessarily be assumed because the partnership has not been terminated. Marriages may continue despite significant marital conflict for a number of reasons such as children, social pressure, lack of viable alternatives etc, (Abrams, 1981). As in many areas of the literature about the psychosocial aspects of spinal cord injury there is limited information and what does exist is not conclusive and findings are not consistent. Thus divorce rates must be used with caution, and never in isolation, when making conclusions about adjustment.

In a study of pre-injury marriages it is reported that 26.7% of the men who had been married at the time of injury were divorced at the time of the study (El Ghatit & Hanson, 1975). Seventy-six percent of this group of divorced men indicated that they felt the injury had played a significant role in the divorce. It was however noted in this study, that the 26.7% divorce rate was less than the rate for the general population in the United States (quoted as 33%) and was approximately half the predicted rate for the state of California (the residence of the sample). El Ghatit and Hanson (1975) did not find any relationship between level of injury (i.e. degree of disability) and divorce rates. They did however report two other interesting findings: (1) a higher divorce rate for those marriages with children and; (2) the lowest divorce rate in marriages where the man was currently employed.

38

In a further study of marriage and divorce following spinal cord injury El Ghatit and Hanson (1976) reported that 24.6% of their sample who had married post-injury were divorced at the time of the study. Of these 41% thought that their spinal injury had significantly contributed to the divorce. This is compared to 76.4% of the pre-injury marriages as reported in the previous study. El Ghatit and Hanson (1976) do not report any significant difference between divorce rates for pre-injury marriages and post-injury marriages.

The El Ghatit and Hanson studies should however be interpreted with caution because their sample was limited to males who were all patients of a Veteran's Hospital and their measures of divorce differed. For persons with spinal cord injury the measure was the percentage of those who had ever divorced but for the general population the ratio of divorces to marriages for a given year was used (Brown & Giesy, 1986).

Two other early studies present conflicting findings. Siller (1969) indicates that marriages that predate the injury have a relatively high divorce rate while Guttman (1964) in a comparison of divorce rates for pre-injury and post-injury marriages found that pre-injury marriages have about the same chance of ending in divorce as the general population but that post injury marriages had a better chance of succeeding.

In a review of the literature on the marital impact of spinal injury, Abrams (1981) found that marital adjustment is not so much affected by the impact of the disability as by individual characteristics of each relationship. She concluded that spinal injury does not seriously impair marital functioning. It should be noted however that while she claims this study is a review of the literature on the impact of spinal injury on marriage, she in fact reviews only three articles that are specific to spinal injury. The rest of the literature is theoretical in nature or deals with severe disability in general terms. Her conclusions can not be therefore taken as conclusive (Abrams, 1981).

The proposition that people are selected in and out of marriage on the basis of their health or disability status was tested by Brown and Giesy (1986). They hypothesed that the physical, psychological and economic consequences of spinal cord injury in combination with its

39

stigma, would make it more difficult for persons to enter into relationships, marriage, or remarriage and that it would be more difficult to maintain existing relationships resulting in more divorces. In support of their hypotheses they reported that the marital status of the sample (n = 251) was markedly different from the general population. There were 26.6% fewer people married, 13% more divorces, and 13.5% more singles, than would have been anticipated based on US Census figures. This is in contrast to the findings of El Ghatit and Hanson, who reported that the divorce rates for people with spinal cord injury in the United States was the same as the general population (Brown & Giesy, 1986).

Examining factors that might affect the marital status of people with spinal cord injury Brown and Giesy (1986) also found that social acceptance may impact on the chances of entering into new relationships and increase the risk of divorce. Severity of disability, the need for assistance with personal care, and lower socio-economic status were all found to have a negative impact on marriage.

In a study that looked at attitudes to marriage and relationships by people who had sustained spinal cord injury, it was found that attitudes of the person with the disability may impact on the outcomes (Berkowitz, Harvey, Greene, & Wilson, 1992). A random sample of persons with spinal cord injury (average 14 years post injury) were interviewed about changes to their marital plans and relationships as result of their injury. Three percent reported that they had ended a relationship soon after becoming injured and another three percent indicated that they believed that they would not or could not ever marry. In this study 77% of those who believed their divorce was a consequence of their injury either had not remarried or had remarried and divorced again (Berkowitz et al., 1992).

Michael Oliver and colleagues (1988) in the book "Walking Into Darkness: The Experience of Spinal Cord Injury" also present very revealing qualitative data on the attitudinal impact on marital relationships. They interviewed 26 men who were married and living with their wives at the time of injury. At the time of interview 5 were divorced and one was separated. The majority of these divorces occurred in the first three years following injury. Several respondents in this survey indicated that their spinal cord injury

40

had resulted in changes that made it difficult maintain a relationship or impossible to enter into new relationships. The following excerpts reveal attitudes about the need for reciprocity in relationships: "This disability is too big to consider a relationship. If you're having a relationship with someone you've got to be convinced you're giving as much as taking. With people like me there's too much taking." (Oliver et al., 1988, p.50).

Another man's feelings were reported as similar: "I could probably do more to make opportunities, but the disability is a barrier. It bugs me. It makes me feel inferior to most men. I don't know if the problem is really in my own head. It might be. It's after all making the first contact. I find the disability restricting psychologically. It's too difficult to break the ice. I feel people shy away from close contact with disabled people." (Oliver et al., 1988, p.50) These qualitative findings give further support to Berkowitz's hypothesis that the attitude of the person with the disability may also impact on the ability to enter into or maintain relationships (Berkowitz et al., 1992). Cultural attitudes and judgements regarding disabled people and their relationships or sexuality may further contribute to the challenges encountered in establishing or maintaining meaningful relationships. Another study aimed at comparing pre-injury marriages and post-injury marriages reported findings consistent with previously quoted studies (Crewe, Athelstan, & Krumberger, 1979). The divorce rate for pre-injury marriages was approximately 30% as compared with only about 8% of the post-injury marriages in this study. The other interesting finding in this study was that five out of the six married women with spinal cord injuries in this study were divorced. The sample for this study consisted of people who had been injured 2.5 to 27 years prior to the study (mean time since injury was 10 years). There was great variance in the length of marriage between the pre-injury group (median length 19 years) and post-injury group (median length 5 years) (Crewe et al., 1979).

41

Crewe's group (Crewe et al., 1979) attempted to assess the quality of the relationships through in-depth interviews and psychologists' assessments of the data collected to make comparisons. They reported that spinal cord injured partners in pre-injury marriages were more dependent on their spouses for assistance with daily living tasks than their counterparts in post-injury marriages. In addition it was found that those in post-injury marriages were more likely to be in paid employment and judged to be better psychologically adjusted, and happier in their marriages (Crewe et al., 1979).

A number of factors are discussed that may explain these findings. Pre-injury marriages had to undergo a number of adjustments and it is suggested that these created difficulties because they were outside the original understanding of the marriage and the partners' roles within that relationship. On the other hand post-injury marriages were entered into with a clearer understanding of the effect of the disability from the beginning. Post injury marriages were also seen as being free from the issues that guilt or obligation might play in keeping the marriage together (Crewe et al., 1979).

Crewe and Krause (1988) added people with more recent injuries to the previous sample to test and extend the original study of marital relationships. In this study they concluded that marriages that survive for years (unspecified) after one partner experiences spinal cord injury are generally viewed as satisfying and comfortable. This would be consistent with the theory that adjustment to spinal cord injury takes an extended period of time. Crewe and Krause report that those in post-injury marriages were more likely to obtain further education, employment, go out socially more often and reported greater satisfaction with their life than those in pre-injury marriages (Crewe & Krause, 1988).

In a sample of 133 patients married at the time of injury, 22 (16.5%) were divorced within three years of injury and another 3 (2.2%) were legally separated whereas 8 (6%) divorces would have been expected according to national estimates (USA). Eight of these divorces occurred in the first year, six in the second year and eight in the third year (DeVivo & Fine, 1985).

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DeVivo and Fine (1985) then analysed national spinal cord injury data and the same pattern was found on a national level. Of 575 patients with intact marriages at the time of injury 83 (14.4%) were divorced 3 years later and 30 (5.2%) were legally separated, however only 36 (6.2%) divorces would have been expected. In comparing the national figures they noted an increasing trend. Twenty divorces occurred in the first year following injury, 29 in the second year and 34 in the third year post-injury. DeVivo and Fine (1985) reported 5 variables that were found to be associated with divorce in the first three years: (1) age at injury (younger were more likely to divorce); (2) gender (being female); (3) race (being black); (4) having no children; (5) a prior divorce.

Another study aimed at examining the marital characteristics of couples who coped successfully following the spinal cord injury of one partner as opposed to those in marriages who were not coping so well (Urey & Henggeler, 1987). The authors also made comparisons with an able-bodied control group. They found similar patterns of communication and patterns of marital distress in both the spinal cord injury group and the able-bodied group. They did however note that those with spinal injuries were more socially isolated and expected greater adaptation within the relationship than able bodied couples who seemed to be experiencing similar degrees of marital distress (Urey & Henggeler, 1987).

In 1996 DeVivo and Richards published an analysis of marriage rates of people enrolled between 1973 and 1992 in the National Spinal Cord Injury Statistical Center in the United States. Reflecting changes in research interest in quality of life issues, this contemporary study focuses on marriage rates rather than divorce rates. Examining a total sample of 6,853 persons they found that 781 marriages had occurred when 1,884 would have been expected based on national trends adjusted for age, gender, and marital status. In other words the number of marriages in this sample was reduced by 59% when compared to the overall U.S. population. In this sample 87% of persons remained single over the first five years postinjury whereas 72% would have been expected to remain single. The reported marriage rate was very low, at 89% less than the expected national marriage rate in the first year following injury but only 37% and 44% less than the expected national rate in the second and third

43

year post-injury respectively. Perhaps some planned marriages were postponed for a year or two as a result of the injury.

Thus fewer marriages occurred than would have been expected based on age, gender and marital status of matched able-bodied peers. DeVivo and Richards (1996, p. 333) also note that despite improved medical outcomes and improved reports of subjective quality of life in recent years there is no evidence of trends towards increasing marriage rates since 1973.

DeVivo and Richards (1996) went on to try to develop a model that would be predictive of marriage following spinal cord injury. They found no significant difference in marriage rates based on either gender or race. Significantly fewer marriages occurred for people who were single or divorced at the time of injury. Higher educational levels were associated with higher marriage rates but even with college education marriage rates still remained approximately half the expected rate. The highest marriage rate was for people with paraplegia, incomplete injuries and those who were functionally independent. This group also had the lowest divorce rate, suggesting that degree of physical impairment does play a role in ability of those with spinal cord injury to enter and maintain relationships. DeVivo and Richards conclude that a number of factors could contribute to reducing marriage rates in this population. The factors identified included; physical impairment, the burden of personal care, negative attitudes of potential marriage partners, poor coping/adjustment, as well as problems meeting potential marriage partners due to lack of transport, inaccessible housing, poor community access, social skills deficits and pre-existing personality problems (DeVivo & Richards, 1996).

The 59% reduction in expected marriages reported by DeVivo and Richards leads to a conclusion that the social cost of spinal cord injury is substantial (1996). A qualitative study further confirms this impression of social cost and societal attitudes that could contribute to the reduction in expected marriages (Milligan & Neufeldt, 1998). It is reported that women planning marriage to men with spinal cord injury frequently received warning about their commitment to and involvement with their partner and that conflict and even estrangement with the wife's parents was a feature of a number of these relationships.

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In the 1970's and early 1980's there were several studies that suggested that the marital status of people with spinal cord injury was not very different from that of the general population (Abrams, 1981; Deyoe, 1972; El Ghatit & Hanson, 1975; El Ghatit & Hanson, 1976). In the 1980's and 1990's a group of more representative studies found that the divorce rate for people with spinal cord injury is higher in the early years following injury and that people with a spinal cord injury are less likely to enter into a marriage than members of the general population (Brown & Giesy, 1986; DeVivo & Fine, 1985; DeVivo, Hawkins, Richards, & Go, 1995).

These studies give some insight into the problems of adjustment that people with spinal cord injuries and their significant others must make if they are to continue to cope. The first three years are considered crucial. The elevated divorce rates in the first three years indicate that there is an initial period of stress and adjustment in many relationships following spinal cord injury. However divorce rates beyond the first three years are similar to that of the general population and this suggests that spinal injured persons cope in their relationships about as well as the able-bodied population considering the issues to be faced. More research that will facilitate the understanding of how they achieve this is needed.

EMPLOYMENT Return to paid employment is considered one of the most meaningful measures of successful rehabilitation (Connors, Graham, & Pulso, 1987; Krause & Anson, 1996a, 1996b; Krause et al., 1999; Krause, Steinberg, Maides, & Lottes, 1998; Murphy, Brown, Athanasou, Foreman, & Young, 1997). Employment is frequently used as an indicator of overall recovery from illness or injury and at one time was even equated with successful rehabilitation (Neff, 1971). There have been a substantial number of studies of employment following spinal cord injury but the findings are quite variable and difficult to compare. For example reported return to employment rates vary from 13% to 69% (Athanasou, Brown, & Murphy, 1996; Trieschmann, 1988). This is due to a number of methodological differences in the studies. For example some studies define employment 45

as paid employment and others accept definitions which include productive activities such as voluntary work and homemaking activities. The time post injury of the sample is also quite varied across the studies and this impacts on the findings. The employment studies and their findings are summarised in Table 2.2.

There is lack of agreement about the factors associated with return to work but some generalisations do consistently emerge from the studies reviewed.

People with less severe injuries (i.e. incomplete injuries or paraplegia) have a greater chance of re-entering the workforce (DeVivo & Richards, 1992; DeVivo, Richards et al., 1991; DeVivo, Rutt, Stover, & Fine, 1987; Hess, Ripley, McKinley, & Tewksbury, 2000; Krause & Anson, 1996a; Krause et al., 1999; Krause, Steinberg et al., 1998; Murphy et al., 1997; Noreau, Dion, Vachon, Gervais, & Laramee, 1999; Tomassen, Post, & van-Asbeck, 2000).

Those who are younger at the time of injury have a greater chance of becoming employed post injury (DeVivo & Richards, 1992; DeVivo, Richards et al., 1991; Hess et al., 2000; Krause & Anson, 1996a; Krause et al., 1999; Krause, Steinberg et al., 1998).

Individuals who have higher levels of education are consistently identified as having a better chance of being employed. This outcome may also be influenced by the fact that higher levels of education may prepare people for occupations that are less physically demanding (Alfred, Fuhrer, & Rossi, 1987; Crisp, 1990a, 1990b; DeVivo & Richards, 1992; DeVivo, Richards et al., 1991; El Ghatit & Hanson, 1979; Hess et al., 2000; Krause & Anson, 1996a; Krause et al., 1999; Krause, Steinberg et al., 1998; McShane & Karp, 1993; Murphy et al., 1997; Noreau et al., 1999; Tomassen et al., 2000). It has also been suggested that engaging in educational activities post-injury are a significant predictor of employment (El Ghatit & Hanson, 1979; Tomassen et al., 2000).

In the United States being Caucasian as opposed to a member of a minority racial group is identified with greater opportunity for employment following spinal cord injury (DeVivo et al., 1987; Hess et al., 2000; Krause & Anson, 1996a; Krause et al., 1999). In other countries

46

this variable is not reported, perhaps because of the small number of individuals from minority groups being represented in the study samples.

Other variables that are identified in isolated studies include being able to independently access transport and particularly being able to drive oneself (includes functional ability and access to a suitably modified vehicle) (McShane & Karp, 1993; Noreau et al., 1999), being married (DeVivo et al., 1987; Hess et al., 2000), having children (DeVivo et al., 1987), being highly motivated to be employed (DeVivo & Richards, 1992; DeVivo, Richards et al., 1991; DeVivo et al., 1987; McShane & Karp, 1993), having been employed prior to injury (Krause et al., 1999), and social support (McShane & Karp, 1993).

Most of the studies reviewed reported the employment rate at the time of survey. Krause however noted that 85% of participants who were injured more than 20 years ago had been employed at some stage since injury (Krause, 1992b). He suggests that reporting employment figures for a static point in time may underestimate employment rates. He further suggests that time since injury may also be a factor.

Many of the factors identified as predictors of employment for spinal cord injured persons are biographical characteristics such as age, gender, or race and as such are not amenable to intervention by rehabilitation professionals. Education and transport issues are the easily addressed issues that will directly impact on the individual. Other issues require intervention at a policy or societal level. These include factors that relate to discriminatory practices such as race discrimination and negative attitudes towards the disabled.

47

Table 2.2: Employment Studies in Spinal Cord Injured Populations

CITATION El Ghatit & Hanson (1979) Alfred, Fuhrer & Rossi (1987) DeVivo et al (1987) COUNTRY USA USA USA SAMPLE SIZE 745 33 154 TIME SINCE INJURY _ 2 Years 1stYear 2nd Year 3rd Year 7th Year DeVivo, Richards, Stover & Go (1992; 1991) USA 6,862 2nd Year 12th Year PERCENTAGE EMPLOYED 50% _ 3% 9% 13% 19% 12.6% 38.3% FACTORS PROMOTING EMPLOYMENT Post-injury education Higher levels of education Higher levels of education

McShane & Karp (1993)

Canada

120

3-10 Years

42%

Levi, Hultling & Seiger (1996) Krause & Anson (1996a)

Sweden USA

353 362

Average 11 years Average 6 years

46% 25%

Being white Having children Having a college education Functionally independent Strong motivation Being younger at time of injury Being male Having higher educational levels Being highly motivated Higher functional ability scores Being employed prior to injury Higher educational levels Motivation to be employed Being able to drive (i.e. having the ability and a modified vehicle) Social support Not reported Being younger (aged 18-30 years) Incomplete paraplegia Higher levels of education Being Caucasian

48

CITATION Berghammer, Gramm, Vogler, & Schmitt-Dannert (1997) Ville & Ravayd (1998) Krause, Stenberg, Maides & Lottes (1998)

COUNTRY Germany

SAMPLE SIZE 651

TIME SINCE INJURY Unknown

PERCENTAGE EMPLOYED 45%

FACTORS PROMOTING EMPLOYMENT Returning to the same job _ Being Caucasian Being younger at time of injury Being paraplegic Higher levels of education Being Caucasian Being younger at injury Having lived longer with SCI Having a less severe injury Higher levels of education Having been employed pre-injury Incomplete paraplegia Higher levels of education Being able to drive a car Independence in assessing transport Being employed in light to moderate physical work prior to injury Being male Greater functional independence Higher educational level Undertaking educational activities post-injury Higher education levels Greater muscle strength Being married Being younger at time of injury

France USA

350 1,032

> 3 years Average 13 years

28.3% 36%

Krause et al (1999)

USA

3,756

Average 6 years

25%

Noreau et al (1999)

Canada

418

Average 13 years

27%

Tomassen, Post, & Asbeck (2000)

The Netherlands

234

Average 4.5 years

37%

Hess, Ripley, McKinley & Tewksbury (2000)

USA

3,175

1st year 2nd year 3rd year

21% 21% 23%

49

CITATION

COUNTRY

SAMPLE SIZE

TIME SINCE INJURY

PERCENTAGE EMPLOYED

FACTORS PROMOTING EMPLOYMENT

Australian Studies Crisp (1990a; 1990b; 1992b) Australia 60 Average12 years 47%

Higher life satisfaction and well being scores

Athansou, Brown & Murphy (1996) Murphy et al (1997)

Australia

139

_ Average 12.5 years

31%

Not Reported Lower level injuries i.e. paraplegia Undertaking study since injury Having a higher occupational level prior to injury Higher levels of education

Australia

219

37%

Engel, Murphy, Athansou & Hickey (1998)

73 Australia

Average 14.5 years

32.5%

Not being entitled to compensation

50

QUALITY OF LIFE In the last decade interest in quality of life has assumed increasing importance in rehabilitation fields (Fabian, 1990; Fuhrer, 1994; Whiteneck, 1994) and in studies of spinal cord injury populations (Boswell, Dawson, & Heininger, 1998; Dijkers, 1997; Dijkers, 1999; Evans et al., 1994; Fuhrer, 1996). As can be seen from Table 2.3 all of the reported studies have been published in the 1990s. This reflects a growing awareness that improvements in long term quality of life are a primary goal of rehabilitation as well as the need to identify factors that are able to be impacted by rehabilitation interventions to improve the long term quality of life (Boswell et al., 1998).

In a review of literature on quality of life issues in rehabilitation fields, the ambiguity and lack of consistent approach to defining quality of life was highlighted (Gill & Feinstein, 1994). It was found that only 15% of the reviewed articles offered a conceptual definition of quality of life and that a total of 159 different assessment tools were used, with 136 tools being reported in only one reviewed article (Gill & Feinstein, 1994). They further reported that only 13% of the research reviewed allowed for subjective responses from the participants. This wide definitional ambiguity and lack of measurement consensus results in difficulties making comparisons between findings. Prior to the 1990's subjective well-being was almost totally absent from studies of quality of life (Gill & Feinstein, 1994). Since the 1990s the importance of perceived quality of life, life satisfaction or subjective well-being has received increasing attention (Evans et al., 1994; Hansen, Forchheimer, Tate, & Luera, 1998).

Essentially quality of life studies fall into two categories. There are those who consider quality of life to be an external objective factor and those who consider that quality of life is a subjective quality that only the individual can quantify (Dijkers, 1999). In the latter construct, quality of life is defined as the reaction to the (lack of) congruence between aspirations and accomplishments, as perceived by the person involved (Dijkers, 1999 p. 830). It has been emphasised that subjective perceptions provide information that is not obtained using objective measures and that this data is essential to understand the

51

meaning of quality of life (Whiteneck, 1994). It is acknowledged that subjective quality of life has both cognitive and affective (emotional) components (Diener, 1994). Thus the subjective quality of life is conceptualised as having four components: (1) the cognitive appraisal of the individual of their satisfaction with life as a whole; (2) cognitive appraisal of specific life domains (such as family life, vocational opportunities, health etc); (3) the presence of positive emotional response; (4) the absence of negative emotional response (Diener, 1994). Studies utilising subjective quality of life measures have become more common over the last decade (Decker & Schulz, 1985; Dunnum, 1990; Fuhrer, 1994; Fuhrer, Rintala, Hart, Clearman, & Young, 1992; Krause, 1992c; Lundqvist, Siosteen, Blomstrand, Lind, & Sullivan, 1991). These perspectives also relate to the dispositional versus cognitive/behavioural theories of coping and adjustment, which are discussed in more detail in next chapter.

Despite the methodological issues discussed above there is an emerging body of research that establishes that quality of life for people with spinal cord injury is lower than for either non-disabled controls and the overall population (Bach & Tilton, 1994; Clayton & Chubon, 1994; Decker & Schulz, 1985; Fuhrer et al., 1992; Krause & Crewe, 1991a; Lundqvist et al., 1991; Post, Van Dijk, Van Asbeck, & Schrijvers, 1998; Rintala, Young, Hart, Clearman, & Fuhrer, 1992; Schultz & Decker, 1985; Siosteen, Lundqvist, Blomstrand, Sullivan, & Sullivan, 1990a). Recent research findings indicate that while life satisfaction scores are lower in spinal cord injured populations they are not very much lower (Dijkers, 1999).

These findings of lower life satisfaction have raised particular research interest in the relationship between quality of life and disablement components of spinal cord injury (Dijkers, 1997; Fuhrer, 1996; Manns & Chad, 1999). Dijkers (Dijkers, 1997) presents a Meta analysis of 22 studies reporting on the relationships between impairment (organic disorders within the body), disability (difficulty in performing activities of daily living) and handicap (disadvantage in performing social roles). The Meta analysis found that in spinal cord injured populations quality of life appears to be little if at all related to impairment or disability. That is subjective well-being is not related to the severity of the

52

injury or the extent of the disability sustained (Dijkers, 1997). Various dimensions of handicap were found to be more strongly related to quality of life. A lack of family role seems to result in a lower quality of life. Less occupational handicap is associated with enhanced subjective well-being. Mobility handicaps were found to be inversely related to quality of life. There is also a strong link between social support and quality of life (Dijkers, 1997). These findings are consistent with findings reported by two earlier literature reviews of quality of life following spinal cord injury (Evans et al., 1994; Fuhrer, 1996). Fuhrer (1996) also reported positive relationships with subjective wellbeing for perceived financial security, satisfaction with the amount and quality of social contacts, leisure activities, family relationships, sex life and perceived community integration. This is consistent with the findings of several other studies (Boschen, 1996; Boswell et al., 1998; Coyle, Lesnik-Emas, & Kinney, 1994; Hansen et al., 1998; Krause, 1992c; Post, deWitte, van Asbeck, van Dijik, & Schrijvers, 1998; Post, Van Dijk et al., 1998; Westgren & Levi, 1998).

A large study (n = 650) in the USA argues that more attention needs to be focused on the interface between life satisfaction and environmental access (Richards et al., 1999). It is argued that as established above, life satisfaction is not strongly related to severity of physical impairment or disability but rather to handicap. Therefore social and occupational role functioning with an emphasis on the contextual factors (rather than person factors) should become the focus of quality of life research (Richards et al., 1999). This study found that being healthy, busy and actively engaged both inside and outside the home were positively associated with life satisfaction. The authors suggest that access to the environment facilitates these activities, and that access in turn results in enhanced life satisfaction. However the study fails to establish a link other than a weak inferred relationship. Further research is required.

A number of studies also examined life satisfaction in a variety of specific life domains. Satisfaction with sexual life and vocation are the lowest rated domains, suggesting greater attention should be directed to facilitating better outcomes in these areas during rehabilitation (Fuhrer, 1996; Post, deWitte et al., 1998; Post, Van Dijk et al., 1998).

53

Satisfaction with family life is generally reported to be high and one study reported satisfaction with family life was rated more highly by persons with spinal cord injury than the non-disabled control group (Fuhrer, 1996; Post, deWitte et al., 1998; Post, Van Dijk et al., 1998).

Health status is another life domain that receives attention in the quality of life literature. Perceived health was found to be significantly related to life satisfaction (Fuhrer, 1996). Both functional health and social functioning are affected by health status and this may account for the contribution of perceived health status life domains to quality of life outcomes (Fuhrer, 1996).

In further corroboration of the above results, a descriptive study also reports that the lowest levels of satisfaction are reported in the domains of sex life, employment, finances, and life opportunities. Higher levels of satisfaction are reported in the areas of living arrangements, family relationships, emotional adjustment, and social life. The author suggests that the areas of lowest satisfaction may be areas over which the individual has least direct control (Krause, 1992c).

Interest in quality of life as an outcome following spinal cord injury has increased over the last ten years. Researchers have attempted to identify factors that are the source of quality of life. However the existing body of knowledge indicates that quality of life is determined by a host of factors, including both inter and intra personal factors as well as environmental variables. Causal relationships can not be established on the basis of the existing research. Intervention by rehabilitation professionals should be directed at those life domains, which are most receptive to change, as well as focusing attention on environmental factors such as equity in employment and access, to enhance the quality of life for people with spinal cord injuries and challenging cultural stereotypes.

54

Table 2.3: Quality of Life In Spinal Cord Injured Populations

CITATION COUNTRY SAMPLE VARIABLES STUDIED (MEASURES) Physical function (Sickness Impact Profile) Psychological function (Sickness Impact Profile, Mood Adjective Check List, Hospital Anxiety and Depression Scale) Quality of Life (Visual Analogue Scale) Access Various domains of life quality (Life Situation Questionnaire) Personality dimensions (Multidimensional Personality Questionnaire) Life satisfaction (LSIA-A) Self assessed health Perceived control Disability Impairment Handicap (social role performance) Social support Self concept Health status Residential choice congruence Residential satisfaction Locus of control PREDICTORS OF POSITIVE LIFE SATISFACTION Ability to drive a car Involvement in social activities PREDICTORS OF NEGATIVE LIFE SATISFACTION Being older at the time of injury

Siosteen et al (1990a)

Sweden

56

Krause (1992c)

USA

286

More perceived control over life Economic satisfaction Satisfaction with living arrangements and interpersonal relationships Better self-assessed health Greater perceived social support Greater social integration Greater perceived control over life More independence

Being more dependent Lower levels of economic resources Unemployment Sexual issues Being more dependent

Fuhrer et al (1992)

USA

140

Boschen (1996)

Canada

82

Dijkers (1997)

International

847

Self concept Health status Residential satisfaction Locus of control Financial security Being Employed Social support Being less disabled Social integration

Lack of family role

55

CITATION

COUNTRY

SAMPLE

VARIABLES STUDIED (MEASURES) Life satisfaction (Life3 Measure) Life domains Leisure satisfaction Family satisfaction Socio-economic satisfaction Health satisfaction & accessibility Depression (CES-D) Self esteem (Rosenbergs SelfEsteem Scale) Mastery Scale Activities of daily living (ADL) Age Time since injury Gender Marital status Educational level Level of injury Completeness of injury Health problems Functional health status Life satisfaction Age Age at injury Time since injury Extent of Injury Gender Medical problems Objective handicap Perceived handicap Coping strategies Life satisfaction

PREDICTORS OF POSITIVE LIFE SATISFACTION Higher levels of leisure satisfaction Higher self esteem Higher levels of health satisfaction

PREDICTORS OF NEGATIVE LIFE SATISFACTION

Coyle, LesnikEmas & Kinney (1994)

USA

91

Post et al (1998; 1998)

The Netherlands

315

Being married Social functioning

More serious injuries Health problems Social functioning

Westgren & Levi (1998)

Sweden

320

Being younger Longer time since injury Being married Being employed

Being single Medical problems (pain, spasticity, pressure sores, sexual dysfunction, and bladder and bowel problems) Being unemployed Higher perceived handicap Using escape-avoidance/selfblame coping strategies

Lower perceived handicap

Hansen, Forchheimer, Tate & Luera (1998)

USA

78

56

CITATION

COUNTRY

SAMPLE

VARIABLES STUDIED (MEASURES) Global quality of life Partner relationships Functioning (Glasgow Outcome Scale) Mood (Hospital Anxiety and Depression scale) Life domains

PREDICTORS OF POSITIVE LIFE SATISFACTION Being in good spirits Physical and social independence

Kreuter, Sullivan, Dahllof, & Siosteen (1998)

Sweden

167

PREDICTORS OF NEGATIVE LIFE SATISFACTION Being depressed Being physically or socially dependent

Boswell, Dawson & Heininger (1998)

USA

12

Richards et al(1999)

USA

650

Satisfaction with life (Satisfaction wit Life Scale (SWLS) Medical complications Rehabilitation insurance status Occupational; status (CHART Occupation Scale) Self-perceived health (SF-36) Access to the environment (CHART Mobility Scale)

Positive attitude to life Work opportunities and work satisfaction Adequate level of resources (housing, financial, attendant care and transport) Better access to the environment Better self-perceived health

Negative attitude to life

57

FOLLOW-UP STUDIES Researchers conducting follow-up studies of psychosocial trends for people with spinal cord injuries have largely attempted to identify variables that are related to better adjustment outcomes. The focus of the majority of these studies has been to predict the variables of post discharge adjustment and have not attempted to assess the process itself. This is because of the conceptual difficulties and ambiguity in defining and measuring "adjustment". Demographic, functional or behavioural variables have been the subject of many of these studies. Adjustment is however a dynamic process and there is lack of agreement in the literature as to the elements that are most important in the adjustment process following spinal cord injury. Research has concentrated on two fronts investigating both the immediate and the longer-term outcomes of spinal cord injury. As discussed above there has been increased attention to process orientated research in the last ten years and the research designs to address these issues are becoming increasingly sophisticated.

The Beck Depression Inventory, the Wiggins Hostility Scale, and the Handicap Problems Inventory were used in a study that specifically examined changes in psychological adjustment in the first year post-discharge (Richards, 1986b). These measures were administered at 3 weeks, 3 months and 12 months post-discharge to a sample of 36 persons with spinal cord injury and a control group of 29 selected randomly from hospital staff. It was found that persons with spinal cord injury were significantly more depressed than the able bodied control group immediately following discharge but that this had largely resolved by 4 months following discharge. A similar trend was reported on the hostility measure. The Handicapped Problems Inventory indicated that the sample became increasingly less troubled by their disability over time. It was concluded " that persons with spinal cord injury do experience emotional distress after discharge, but that this rapidly dissipates to the point that at 1 year post-discharge such persons do not demonstrate appreciably more distress than able-bodied controls.... the degree of distress experienced.... appears to be mild to moderate at worst, suggesting that the level of distress generated by the post-discharge adjustment process may have been overestimated by some observers." (Richards, 1986b, p. 364).

59

The Richards study (1986b) method does not highlight individual differences and therefore those who may have experienced severe adjustment difficulties are obscured. It is these problematic patients who are the most visible to health care professionals and he suggests that this may in part explain the overestimation of difficulties based on clinical experience. He also fails to offer an explanation or discussion regarding the how or why of this change process. He simply documents change over time.

Using qualitative methods Pilsecker (1990) contacted 31 spinal injured patients six months post-discharge. She reports that the majority was satisfied with most aspects of their lives, the exception being those in the 30-40 year old group. Her study however looks only at the very early stage of the whole adjustment process, and she does in her concluding comments suggest that there were indications that some problems were unresolved and may cause more distress in the future. This study is quite optimistic about the ability of spinal cord injured persons to cope with the difficulties presented. Spinal cord injured persons are reported to see that "Life was a challenge, but it was it a challenge that could mostly be met" (Pilsecker, 1990, p. 95).

The Minnesota Longitudinal Study (as it has become known) is the longest running investigation into psychosocial outcomes and the adjustment process following spinal cord injury reported in the literature. It began in 1973 with the development of the Life Situation Questionnaire (LSQ) with data collected from 256 respondents in 1974 (Crewe, 1980; Krause & Crewe, 1987). This study did not start out as a longitudinal study but repeat follow up data has been collected from the original 1974 respondents in 1985, 1989 and again in 1994 (i.e. four data collections over 20 years). One hundred and fourteen respondents have returned the LSQ on all four occasions (Krause, 1998b). This is a pivotal piece of research in the spinal cord injury literature. Initially interest was focussed on implications for marriage and sexual adjustment (Crewe et al., 1979; Crewe & Krause, 1988; Crewe & Krause, 1990b), and employment (Crewe, Athelstan, & Bower, 1978; Krause, 1990, 1992a, 1992b) but subsequent reports have expanded the data to report on long-term outcomes and change over time (Crewe, 1991; Crewe, 1996; Crewe & Krause, 1990a; Crewe & Krause, 1992; Krause, 1991, 1992a, 1992c, 1992d;

60

Krause, 1997, 1998b; Krause & Dawis, 1992; Krause, Sternberg, Lottes, & Maides, 1997). The authors compared adjustment in four general areas: (1) activities, (2) medical outcomes, (3) life satisfaction, and (4) self-rated adjustment over time. They did not report any decline in adjustment outcomes and in fact found that the respondents reported greater satisfaction with their employment situations, had increased their educational level, reported higher self-rated adjustment, and that both the number of days hospitalised and the number of admissions had decreased, between 1974 and 1985 (Crewe & Krause, 1990a; Krause, 1991, 1992d; Krause & Crewe, 1990; Krause & Crewe, 1991a, 1991b). A similar pattern was reported when the 15 years data was analysed (Krause, 1996a).

When the 20 year repeated measures data (1994) was reported the participants (n = 112) were an average of 28 years post injury and had a mean age of 50 years (Krause, 1998b). Some differences were observed at this point. Over the 20 years of the study years of education and years employed at a particular job increased in a linear trend over the whole period with significant change in both. The number of hours spent in employment increased over the first 11 years but remained stable after that. Significant change was also reported in both medical outcomes and activities. The number of hospitalisations and the days hospitalised both decreased over the 20-year period. Life satisfaction remained relatively stable over the whole period of the study with satisfaction with employment being the only item in the life satisfaction scale to significantly change (positive direction) over the course of the study. However self-rated adjustment did change significantly over the course of the study. Self rated adjustment increased between 1974 and 1985 but decreased in 1989 and 1994 (a significant quadratic trend) (Krause, 1998b).

Thus the Minnesota Longitudinal Study identifies change in the sample over the twenty years to be mostly in a positive direction. The authors note that most of the change is in quantifiable outcomes related to health, activities and employment while subjective outcomes such as life satisfaction and problems encountered remain relatively stable over the course of the study (Krause, 1998b). A number of explanations are offered. It is noted that environmental and legislative changes may enhance employment opportunities and improved accessibility of public places, facilitating both greater employment and leisure

61

opportunities over the last 20 years. Reduced hospital admissions may be an outcome of economic pressures on health care and greater emphasis on ambulatory services. The downturn in self rated adjustment and the lack of improvement in life satisfaction may be influenced by situational factors rather than objective measures such as improved employment opportunities (Krause, 1998b). Other researchers have also reported stable life satisfaction outcomes and suggest that life satisfaction may be influenced more by personality factors than external situations (Cook, 1982; Kennedy et al., 2000; Lundqvist et al., 1991).

In an Australian study that looks at the issues of long-term adjustment of people with spinal cord injury, Crisp (1992a) replicated the methods used by Schultz and Decker (1985) to interview 60 people who had experienced a traumatic spinal cord injury more than 5 years prior (mean time since injury = 11 years). He found that people with spinal cord injury achieve a level of psychological adjustment that is equal to that of nondisabled groups. He found that neither age nor time since injury was related to any of the measures of adjustment used in his study. He did find that satisfying social contact and perceived health were related to reports of life satisfaction and high vocational scores (Crisp, 1992a).

The literature generally seem to confirm that people with spinal cord injuries report a satisfaction with their quality of life following discharge (Carlson, 1979; Cook, 1982; Crisp, 1992a; Decker & Schulz, 1985; Krause & Crewe, 1991a; Mayer & Eisenberg, 1982; Menter et al., 1991; Siosteen et al., 1990a; Siosteen, Lundqvist, Blomstrand, Sullivan, & Sullivan, 1990b; Trieschmann, 1988). It is however, difficult to determine with any certainty how long this process takes. These studies utilise a variety of research designs and assessment tools that make comparison difficult. The periods post-injury vary greatly from a few months to more than twenty years. While the Richards (1986b) and Pilsecker (1990) studies suggest that problems associated with adjustment may resolve quickly other literature suggests the process might take much longer, even up to 5 years (Cook, 1982; Kerr & Thompson, 1972; Woodrich & Boland Patterson, 1983). The idea that adjustment is not necessarily achieved quickly is supported by the literature reviewed above that suggests that suicide rates are higher for the first 4-5 years following injury, divorce rates are greater in

62

the first 3 years and the ongoing problems associated with medical complications resulting from self-neglect and depression. The questions about how adjustment is achieved and how long the process takes remains largely unanswered to date. There is a need for more research in this area if we are to answer these questions satisfactorily

VARIABLES INFLUENCING ADJUSTMENT Much of the research into psychosocial and adjustment aspects of spinal cord injury has attempted to identify variables that can be used to predict positive outcomes. Once again there is a great variance in the research quality and methodology used. Despite this, there are however a number of variables that have been consistently linked with positive adjustment outcomes.

Financial security was identified in a number of studies as being a major factor influencing adjustment outcomes (Kerr & Thompson, 1972; Krause & Crewe, 1990). This is perhaps because of greater resources available to manipulate one's environment (i.e. employ care assistants, modify homes or purchase equipment to aid independence and enhance quality of life). Those with more financial resources have a wide range of choices available to them and therefore may perceive greater control over their lives.

Educational level or socio-economic status may be another significant factor in the adjustment process. Those with lower levels of education are hospitalised more frequently for medical complications than those with higher levels of education (Davidoff et al, 1990; Meyers et al, 1989). Spinal cord injured persons with higher levels of education are consistently identified as being better adjusted (Alfred et al., 1987; Decker & Schulz, 1985; DeJong et al., 1984; Nickerson, 1971; Woodrich & Boland Patterson, 1983). Higher educational levels are predictors of successful employment outcomes (DeVivo & Richards, 1992; DeVivo, Richards et al., 1991; DeVivo et al., 1987; Hess et al., 2000; Krause, 1996a; Krause, Steinberg et al., 1998; McShane & Karp, 1993; Noreau et al., 1999) Spinal cord injured persons who were in paid employment view their disability with greater acceptance and report greater satisfaction with their quality of life (Decker & Schulz, 1985; DeJong,

63

1993; DeJong et al., 1984; Krause & Crewe, 1987; Krause & Crewe, 1990; Lundqvist et al., 1991). Causal relationships between financial security, employment and education are complex and inter-related.

Environmental accessibility (Brown, Gordon, & Ragnarsson, 1987; DeJong, 1993; DeJong et al., 1984; Forrest & Gombas, 1995; Trieschmann, 1988) and personal mobility/ transportation results in better adjustment outcomes (DeJong et al., 1984; Harrison & Kuric, 1989; Mayer & Eisenberg, 1982). Green et al (1984) found that being able to provide ones own transport was positively related to higher self-concept. Likewise degree of social activity and the ability to drive a car are closely associated with levels of mental well-being (Nosek & Parker, 1987; Siosteen et al., 1990a). Community access and transport may also be key factors impacting on community integration for people with mobility disabilities (Harrison & Kuric, 1989). This may be linked with the financial resources to purchase greater accessibility. Causal relationships have not been established.

Age at onset of injury is consistently identified as a factor influencing adjustment outcomes (Decker & Schulz, 1985; DeVivo, Kartus, Rutt, Stover, & Fine, 1990; Dunn, 1977; Fullerton et al., 1981; Kerr & Thompson, 1972; Wilcox & Stauffer, 1972; Woodrich & Boland Patterson, 1983). Younger people seem to be better able to accept their disability. This is perhaps because they are more flexible in their attitude to life and more open to new ways of doing things (Woodrich & Boland Patterson, 1983). Dunn (1977) reported that older patients reported more discomfort in social situations than their younger counterparts. Adjustment for older patients may also be hampered by a much greater risk of medical complications or pre-existing medical conditions (DeVivo et al., 1990). Judd et al (1986) in an Australian study, reported that nearly half of the hospital sample of spinal cord injured persons with clinically diagnosed depression were over the age of 64 years. Another Australian study that looks at longer term adjustment departs from these findings and reported that age was not found to be related to adjustment (Crisp, 1992a).

Gender has been suggested as a significant variable for predicting adjustment (Woodrich & Boland Patterson, 1983). Females have been found to cope better and were more accepting

64

of their disability, than males. It should however be noted that the sample of females in any representative sample of spinal cord injured populations is always very small compared to the male sample (Go et al., 1995). As a consequence, while this finding has been reported in a number of studies, more research is needed with a larger female sample than was present in any of the studies reviewed before this finding can be accepted as conclusive (Krause, 1998f; Nosek & Parker, 1987).

Marital status has been reported to an important predictor of adjustment outcomes (Alfred et al., 1987; DeJong et al., 1984). Being married is related to being employed (Hess et al., 2000), enhanced quality of life outcomes (Post, deWitte et al., 1998; Post, Van Dijk et al., 1998; Westgren & Levi, 1998) and more independent living arrangements (DeJong, 1993; DeJong et al., 1984).

Social support has been consistently identified as a moderator in stressful situations (Livneh & Antonak, 1997). Social support has been identified in a large number of studies of spinal injured populations as a variable that is important in facilitating positive outcomes (Crisp, 1992a; Decker & Schulz, 1985; Kerr & Thompson, 1972; Krause & Crewe, 1987; Krause & Crewe, 1990; Schultz & Decker, 1985). It has been found that individuals who have high levels of social support and are satisfied with the quality of their social contacts report a greater sense of well-being (Anson, Stanwyck, & Krause, 1993; Decker & Schulz, 1985; Schultz & Decker, 1985). Social support has also been identified as a factor that impacts on the occurrence and severity of pressure sores (Lehman, 1995). Rintala and colleagues found that the amount of social support was positively related to life satisfaction and physical well-being and that satisfaction with one's support network was associated negatively with depressive symptomatology and positively with life satisfaction (1992). To some extent this explains why people with paraplegia level injuries (i.e. lesser physical impairment) are at greater risk of suicide or depressive illness as discussed above. A person with paraplegia is functionally more independent than a person with quadriplegia and therefore requires less formal supports or assistance with daily living activities (Trieschmann, 1988). The key components of social support require further investigation (DeVivo & Richards, 1992). For example one study suggests that the reciprocal nature of

65

social involvement may be the crucial issue (Rintala, Young, Hart, & Fuhrer, 1994; Rintala, Young, Spencer, & Bates, 1996). The role of social support in the coping process is discussed in the following chapter.

Level of lesion (i.e. severity of disability) is consistently found not to be related to how people with spinal cord injury cope in the community (Brown et al., 1987; Decker & Schulz, 1985; Dijkers et al., 1995; Gerhart et al., 1992; Judd & Brown, 1988; Judd et al., 1991; Kerr & Thompson, 1972; Mayer & Eisenberg, 1982; Woodrich & Boland Patterson, 1983). This is reflected in the findings that the suicide rates for people with paraplegia is higher than for other subgroups of people with spinal cord injury as discussed earlier in this chapter (Charlifue & Gerhart, 1991; DeVivo, Black et al., 1991; DeVivo et al., 1993; Dijkers et al., 1995; Hartkopp et al., 1998).

While it is important to identify variables that predict favourable adjustment outcomes for people with spinal cord injury, rehabilitation professionals should note that identifying variables alone may not provide the keys to effective intervention. For example the age at which someone is injured or their marital status are not variables that can be manipulated. On the other hand enhancement of social supports, counselling to facilitate adjustment within marriage, and environmental access are examples of factors that can be influenced by rehabilitation professionals.

SUMMARY This chapter has presented a comprehensive review of the literature related to adjustment outcomes following spinal cord injury. It has been demonstrated that the understandings of adjustment have undergone a continual process of maturation as survival and medical outcomes for people with spinal cord injury have improved over the last three decades. While early efforts in rehabilitation were focused largely on medical outcomes and physical function, since the 1960's attention has increasingly turned to issues such as psychological adjustment and quality of life. The links between medical outcomes and psychological, social and behavioural aspects of rehabilitation are being increasingly

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emphasised in the research. Approaches to the study, definition and methodological issues are becoming increasingly sophisticated.

In summary it was found that rates of depression are greater than in the general population but tend to reduce over time. Suicide rates were high in the first four to five years following a spinal cord injury and self-neglect is a substantial problem resulting in a high incidence of avoidable medical conditions and hospital admissions. The incidence of hospital admissions tends to decrease over time. Rates of marital breakdown are greater in the first three years following injury but beyond five years are similar to that of the general population. These trends confirm our clinical experience that many individuals do experience difficulties in the first few years following spinal cord injury but that these tend resolve within three to five years. On a more optimistic note the follow-up studies do confirm that most people do achieve a state of "adjustment" following such an injury but there continues to be debate as to how long this process takes. A number of variables that predict adjustment are identified in the literature but more research is required to confirm these and investigate the implications for intervention.

The outcomes discussed above tell part of the story about adjustment following spinal cord injury. Nevertheless simply looking at outcomes does not facilitate the understanding of the process of how adjustment takes place. Recognising factors, which enhance adjustment or identifying risk factors for adjustment difficulties, may provide some indicators of intervention for the social worker. However, to be effective the social worker needs to understand how an individual copes with the stresses and disruption that result in one's life when a spinal cord injury is sustained and how a state of equilibrium is re-established. In the next chapter this story is further developed by examining some theories/models of coping and considering their contribution to the knowledge about adjustment and coping in the specific situation of spinal cord injury. A number of coping strategies are presented and discussed to work towards integrating this knowledge into a model that better synthesises the complexities of adjustment as outlined in this chapter.

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CHAPTER THREE THEORETICAL UNDERSTANDING OF THE COPING AND ADJUSTMENT PROCESS

The previous chapter identified a variety of issues and risk factors that suggest that the person who sustains a spinal cord injury may need to marshal significant coping strength and employ a variety of coping strategies to facilitate successful adjustment. The purpose of this study is to explore the ways in which people react to and cope with the imposed conditions of a spinal cord injury. To understand how people go about adjusting to and coping with a spinal cord injury it is important to understand the theoretical perspectives of adjustment and coping and how these have influenced the development of contemporary thinking.

The chapter will review the existing literature about theories/models of coping, the historical development of theories of coping, with particular attention to the contributions from psychology and sociology. The theoretical perspectives are then discussed in terms of their contribution to our knowledge about adjustment and coping in the specific situation of spinal cord injury. A number of coping strategies are identified and discussed from the literature. This chapter will conclude with a synthesis of the developing trends in the literature that could be applied to the spinal cord injury adjustment processes.

Coping refers to the strategies that are used by individuals to achieve adaptive functioning or adjustment. A key issue in the understanding of coping is the recognition of the interplay between a complex range of variables that contribute to the coping process. By identifying the factors, particular coping skills/strategies and the associated resources that facilitate effective coping, clinicians are better able to focus clinical interventions that support "a competence-enhancing view of the client's adaptive strengths, and his or her potential for resilience or personal growth" (Costa Jr, Somerfield, & McCrae, 1996, p. 37).

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Psychology's main contribution to our understanding of coping as an adaptive process has been the increasing awareness of people's adaptive strengths (Holahan, Moos, & Schaffer, 1996) and the identification of the various cognitive processes involved in the coping process (Charmaz, 1983, 1995; Folkman, 1992; Lazarus & Folkman, 1984). To better understand coping and the complexities of the adjustment process it is important to move beyond the interpersonal constructs offered by psychology and consider broader ecological models proposed by some sociological perspectives. While psychology makes a major contribution to the understanding of the process it lacks the fullness to adequately explain the interactions of the range of factors that contribute to the coping process following a spinal cord injury.

Coping and stress are two interconnected concepts related to adjustment following spinal cord injury. Many of the principles related to coping have emerged as the study of stress has progressed (Carpenter, 1992). Major stress or life crises cause people to draw upon adaptive resources (i.e. coping strategies) of which they may have been previously unaware (Lazarus & Folkman, 1984, p. 181).

TERMINOLOGY Stress Stress is defined in different ways by researchers in the field. It is defined variously as an internal state of the person (emotional or physiological reaction), an external event (stressor) or an experience that results from an interaction between the person and their environment (especially those which tax the individual's coping resources) (Aldwin, 1994; Kahana, Kahana, Harel, & Rosner, 1988). Monat and Lazarus (1991) define stress as a demand that disrupts the homeostasis or the balance, and thus taxes the individual's resources in relatively difficult conditions (White, 1976, p. 19).

Coping Simply stated, coping is the way in which people handle stress. In essence, coping is a response to stress. It relates to the way people think (cognitions), the emotions they 69

experience and their behaviour. In addition, the way people cope can alter their emotional response (Monat & Lazarus, 1991, p. 183-184). The function of coping is to reduce stress. It is a dynamic response to the stress creating situation (Kahana et al., 1988).

"Coping is a stabilising factor that can help individuals maintain psychosocial adaptation during stressful periods; it encompasses cognitive and behavioural efforts to reduce or eliminate stressful conditions and associated emotional distress. At a general level conceptualisations of coping may be categorised according to their assumptions about the primary determinants of coping responses" (Holahan et al., 1996, p. 25). Dispositional or trait approaches assume that relatively stable person-bases factors underlie the selection of coping behaviours, while contextual approaches assume that situational factors influence a person's choice of coping strategy (Holahan et al., 1996).

Coping needs to be distinguished from adaptation, which can be conceptualised as the outcome of coping. From a psychological perspective coping tends to be viewed as a form of emotional regulation and problem solving (Costa Jr et al., 1996).

Folkman and Lazarus (1991) highlight the way people think about (appraise) the stressful situation as the most significant aspect that influences the way they cope. They offer the following definition, which expands on the above definitions by introducing the appraisal concept and emphasises the interactions between the person and environmental factors.

"Coping consists of cognitive and behavioural efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person. These cognitive and behavioural efforts are constantly changing as a function of continuous appraisals and reappraisals of the person-environment relationship, which is also always changing. Some of the changes in relationship result, in part from coping processes directed at altering the situation that is causing distress (problem-focused coping) and/or regulating distress (emotionfocused coping), from changes in the person that are a result of feedback about what has happened, and from changes in the environment that are independent of the person. People rely on both forms of coping in managing stressful encounters" (Folkman & Lazarus, 1991, p. 211).

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This definition expands the understanding of coping by highlighting the choice of type of coping strategy and the process aspects of coping. "Definitions and conceptualisation of coping have spanned a wide range of views including: (a) coping strategies as a personality or disposition versus coping as a situational-based or state effort; (b) coping strategies as inherently adaptive, reality-based, conscious, and purposive approaches versus coping or defence strategies as reality distorting, rigid, and maladaptive; and (c) the nature of coping classification (e.g. approach versus avoidance coping, instrumental/active versus affective/passive coping, adaptive versus maladaptive coping" (Livneh, 1999 p. 24). Adjustment Adaptation is often the term used in the psychological literature but is in essence used synonymously with adjustment. Adjustment is conceptualised variously as a process of change or adaptation or conversely as the endpoint or outcome of coping. Adjustment to disability implies reconstruction of one's life and efforts to resume familiar and community roles (Livneh & Antonak, 1997, p.26). Adjustment can be viewed as either positive or negative along an outcome continuum. While adjustment can be viewed as the outcome of the coping process, this should not imply an endpoint at which successful adjustment is achieved (Livneh & Antonak, 1997). Rather, at any point in time, the outcome of the coping process can be viewed as the current state of equilibrium in the individual's life or the present state of adjustment. It is a dynamic and ongoing process.

Trieschmann (1988, p. 42) provides the following definition for adjustment following the onset of a disability. "Adjustment is the process of restoring balance among the psychosocial, biological-organic, and environmental factors in one's life. If the imbalance cannot be corrected by curing the problems in the biological-organic facets of the system, then a new balance is achieved by making accommodations in one's psychosocial and environmental resources."

"Adjustment to disability is a very complicated and individualised process based on the combination of 'psychological,' 'social,' and 'disability' related components. It is possible to conceptualise psychosocial aspects of disability as the internal and external factors that, when combined, create individualised responses not attributable to the disabling condition alone. These internal 71

(intrapersonal) and external (interpersonal and environmental) factors are those psychological, social, and disability related factors that play a primary role in adjustment to a disability" (Garske & Turpin, 1998, p. 30). Thus adjustment is more than just coping with psychological stress (Lazarus & Folkman, 1991, 1993). It involves the restoration of equilibrium in all spheres of one's life (Trieschmann, 1987; Trieschmann, 1988).

COPING WITH SUDDEN ONSET INJURY The onset of a sudden severe disabling condition such as a spinal cord injury results in profound upheaval in a person's life and social situation (i.e. stress). The stresses encountered can be considerable, especially when the uncertainties created by spinal cord injury are taken into account. Adaptation to these life changes creates further stress by changing or potentially threatening to change many aspects of social roles, and functional abilities (Garske & Turpin, 1998). A critical factor in the relationship between stressful life events created by a spinal cord injury and the successful adjustment is coping. Researchers have identified a variety of coping strategies and models of coping (Folkman, 1992; Green, Wilson, & Lindy, 1985; Janoff-Bulman, 1992; Jochheim, 1983; Lazarus & Folkman, 1993; Livneh & Antonak, 1997).

One of the main reasons for studying coping strategies is to understand why people differ so greatly in their responses to the same significant life events and how these differing responses affect overall adjustment outcomes (Gallagher & MacLachlan, 1999).

During the last 20-30 years many rehabilitation professionals have focussed research and clinical attention on describing the process of adjustment to disability generally (Albrecht & Levy, 1991; Corbin & Strauss, 1991; Corbin & Strauss, 1988; Folkman, 1992; Garske & Turpin, 1998; Lazarus & Folkman, 1991; Lilliston, 1985; Livneh & Antonak, 1997; McCrae, 1984) and spinal cord injury specifically (Buckelew et al., 1991; Cairns & Baker, 1993; Carpenter, 1994; Chan, 2000; Chase & King, 1990; Cook, 1982; Craig, Hancock, & Chang, 1994; Craig, Hancock et al., 1994b; Crewe, 1997; Gill, 1999; Green

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et al., 1984; Hammell, 1992; Hanson, Buckelew, Hewett, & O'Neal, 1993; Horn, Yoels, Wallace, Macrina, & Wrigley, 1998; King & Kennedy, 1999; Krause, 1992a; Krause, 1997, 1998a; Krause, 1998b; Krause, Stanwyck, & Maides, 1998). There has been increasing interest in the relationship between coping strategies and adaptation to chronic illness and disability (Livneh, 1999; Livneh, Antonak, & Gerhardt, 1999). A number of models of coping and coping strategies have been developed in the literature and each is based on differing underlying assumptions which lead to different understandings of the process.

PSYCHOLOGICAL MODELS Psychoanalytic Ego Psychology The earliest contributions to the development of coping theory were influenced by Freud's concepts of defence, denial and repression (Lazarus & Folkman, 1984; Parker & Endler, 1996; Zeidner & Endler, 1996). Based on the psychoanalytic ego psychology perspective a hierarchical approach to coping developed and dominated the literature until well into the 1970's (Parker & Endler, 1996). These psychoanalytic perspectives have had substantial influence on the development of the understandings of the adjustment process following the onset of a disability. These hierarchical models support the idea that more mature defence mechanisms result in better adaptations while immature defence mechanisms result in poorer outcomes (Parker & Endler, 1996; Valliant, 1971). Historically these developing concepts of defence mechanisms influenced the way in which the early research into coping was conceptualised.

Particular defence mechanisms were seen as adaptive and began to be labelled as coping activities, which were equated with successful adjustment (Parker & Endler, 1996). This focus on adaptive defences led to an interest in conscious strategies to deal with stress. Emotion-focused versus problem-focused and approach-orientated versus avoidanceorientated coping became the two dimensions of coping most commonly studied (Lazarus & Folkman, 1984).

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Because most of the early research was focussed on extreme life events, such as war experiences, the range of possible coping responses an individual could utilise was narrowed by the situations studied. As this restriction of coping choices was increasingly recognised, researchers began to acknowledge the importance of studying the situational/environmental background in which the coping was happening (Parker & Endler, 1996). In the disability field this included disability specific factors.

Lazarus and Folkman (1991) challenged the concept of a hierarchy of coping and defence mechanisms by suggesting that it is important to be open to the possibility that both coping and defence can work well or poorly in particular persons, contexts, or occasions. Coping should not be equated with mastery, as some stresses are not responsive to overcoming strategies e.g. spinal cord injury. "The concept of a hierarchy of coping devalues the functions of coping that are concerned with "managing emotions and maintaining self-esteem and a positive outlook, especially in the face of irremediable situations. Coping processes that are used to tolerate such difficulties, or to minimise, accept, or ignore them are just as important in that person's adaptation armamentarium as problem-solving strategies that aim to master the environment" (Lazarus & Folkman, 1991, p. 205).

There is now a realisation that the psychoanalytic ego psychology models described above fail to adequately explain the interactions and complexities of the adjustment process, particularly in relation to a sudden onset disability such as spinal cord injury.

Trait/Disposititional Models of Coping The trait/dispositional model of coping is also grounded in the ego psychoanalytical model. It is based on the assumption that individuals have stable coping styles that are determined by personality factors but may vary in their maturity as discussed above. Traits are regarded as personality characteristics of persons that cause them to use particular coping styles across a variety of stressful situations (Cohen, 1991; Holahan et al., 1996; Valliant, 1971). Some examples of personality traits that interested the early ego psychoanalytic investigators of coping included repression/sensitisation and 74

coping/avoiding and were based in the defence mechanisms of ego psychology. Consistent with the ego psychoanalytical model, coping is viewed as a hierarchical process, ranked from the highest and most mature ego processes, followed by defences (neurotic modes of coping) ...and finally at the bottom of the hierarchy are the processes referred to as regressive or ego failure (Lazarus & Folkman, 1991).

The earliest trait research suggested that there might be personality that was more prone to disability (Cairns & Baker, 1993; Siller, 1969) or that specific types of disabilities correlate with specific personality types (Cook, 1987). Within these trait/disposititional models the way a person coped with disability was determined by their personality traits. Shontz (1971) reviewed 250 studies of psychological adjustment to disability and concluded that personality traits alone have not been successfully demonstrated to correlate to specific personality traits or to predict how a person will cope with a disability. Thus the trait/dispositional models also fail to adequately describe or account for the multiplicity and interaction of factors that have been shown to impact on the coping process (Folkman, 1992).

This approach is further criticised for assuming consistency in coping behaviour across any variety of situations. Research indicates that coping dispositions as determined by coping measurement tools are not successful in predicting how individuals actually cope in stressful situations (Cohen, 1991). "It would also be untrue to suppose that individuals use the same coping strategies in dealing with all aspects of a particular situation. There is now considerable evidence that different coping strategies are used in dealing with different aspects of stressful situations. Disposititional approaches to coping are not able to explain the extent of coping strategies that are used, particularly in relation to a complex stressful event" (Cohen, 1991, p. 230).

In the late 1970's there was a move in coping research, which began to reject the hierarchical view of coping with its traits emphasis and move towards a contrasting approach, which considered coping as a process. From a process perspective, coping changes over time and in accordance with the situational context in which it occurs

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(Lazarus & Folkman, 1993, p. 235). The focus shifted from a concentration on personality traits to consider effects of environmental factors on personality. The emphasis continued to be on the personality but a distinction was made between intra and inter-individual approaches to coping (Parker & Endler, 1996).

Parker and Endler (1996, p. 15) conclude their extensive review of the psychoanalytic coping literature with the recommendation that future research on coping should focus on interactional models which study both trait and situational variables simultaneously as both have a role to play in the coping process. This thinking represents a dramatic shift from the early models of coping and facilitated the development of cognitive/behavioural models of coping.

COGNITIVE/BEHAVIOURAL MODELS Two major influences developed in the understanding of the coping process from a cognitive perspective. They are the Appraisal Model first proposed by Folkman and Lazarus (Folkman, 1992; Lazarus & Folkman, 1984) and the model developed around the concept of reconstruction of assumptive worldviews advanced primarily by JanoffBulman (1985; 1992; 1987). These cognitive models of coping developed in response to an increasing recognition of the need to consider the contextual aspects of coping. Cognitive appraisals of potential threat were seen to act as the mediating factor between the stress and coping response. The coping response is conceptualised as changing over time as the stressor or appraisal of the situation change (Holahan et al., 1996). There are two types of appraisal as conceptualised by Folkman and Lazarus. Firstly, primary appraisal in which the person asks, "What do I have at stake?" and secondly "What can I do about it?" (Folkman & Lazarus, 1991; Lazarus & Folkman, 1984, 1991). Appraisals are influenced by a number of factors including, values and beliefs about oneself and the world, and personal resources (e.g. financial means, or problem solving skill, energy, and health). These factors explain in part the variation in appraisal of stressful situations by different people confronting the same or similar stressful situations.

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Under this model coping is seen as affecting the emotions by altering the personenvironment relationship (Folkman & Lazarus, 1991, p. 213).

Folkman and Lazarus propose three possibilities that affect this person-environment relationship: "(1) Cognitive activity that influences the deployment of attention; (2) cognitive activity that alters the subjective meaning or significance of the encounter for well-being; and (3) actions that alter the actual terms of the person-environment relationship" (1991, p. 214-215). Cognitive activity influences the deployment of attention and refers to coping activity that diverts attention from the source of the stress (avoidant strategies) or directs attention to it (vigilant strategies). Avoidant strategies are successful when they neutralise the stress but can be maladaptive if they draw the person's attention away from a problem that needs to be addressed. Vigilant strategies direct attention to the problem in an effort to prevent or control it. Examples are information seeking, or making plans of action (Folkman & Lazarus, 1991).

Cognitive activity that alters the subjective meaning or significance of the encounter can extend from denial-like strategies involving distortion of reality to strategies such as emphasising the positive aspects of a situation in a selective way (Folkman & Lazarus, 1991). The extent to which cognitive strategies are effective depend, in part on whether or not the cognitive construction is likely to be challenged by the environment (Folkman & Lazarus, 1991).

Actions that alter the actual terms of the person-environment relationship i.e. problem focused coping involves cognitive problem-solving strategies as well as direct action which impact on the environment or on oneself (Folkman & Lazarus, 1991).

Schaefer and Moos (1992) postulate that the attributions one makes in the coping process have the potential to promote positive benefits. They organise the coping responses used to accommodate life stresses into "three domains that reflect their main focus: appraisal-

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focus coping involves efforts to define, interpret and understand a situation. Problem focused coping covers efforts to resolve or master life stressors by seeking information, taking direct action, and finding alternative rewards. Emotion focused coping involves attempts to manage emotional reactions to life stressors by regulating one's feelings, expressing anger, and accepting the situation. These coping responses are affected by environmental, personal, and crisis-related factors." (Schaefer & Moos, 1992, p. 151).

Schaefer and Moos (1992, p. 153) then go on to identify three categories of positive outcomes i.e. (1) enhanced social resources e.g. development of more confident relationships, better quality relationships, new support networks (2) enhanced personal resources e.g. cognitive and intellectual differentiation, self-reliance and selfunderstanding, empathy, altruism, and maturity (3) development of new coping skills e.g. cognitive coping skills, problem solving and help-seeking skills, ability to regulate and control affect.

It is acknowledged that outcomes are also affected by personal demographics (such as social class, gender and age), temperament, personality traits and prior crisis experience and environmental factors, such as social support, family cohesion, community resources and the environment (Schaefer & Moos, 1992, p. 161-165). This model highlights the fact that cognitive appraisal and choice of coping responses are affected by the person, by the environment, and by aspects of the stress event itself. Schaefer and Moos suggest that this framework is useful in identifying foci for intervention programs (1992, p. 169).

Janoff-Bulman's work is primarily in the field of post-traumatic stress disorders. She proposes a model of coping that is based on the premise that people hold a basic set of core beliefs or assumptions (i.e. schemas) about the world and their place in it. She identifies three core beliefs that are common to most people. These are: The belief in personal invulnerability The perception that the world is meaningful and comprehensible The perception of oneself as positive (Janoff-Bulman, 1985; Janoff-Bulman, 1992). 78

We all know that bad things (e.g. cancer, car accidents, crime etc) happen in the world. Despite this we tend to live without thinking that these things might happen to us. In other words we operate as "It can't happen to me" - an illusion of invulnerability. When a traumatic event occurs this assumption is challenged or shattered. The sense of safety and security is lost (Janoff-Bulman, 1985, p. 19; Janoff-Bulman, 1992, p. 6-8).

It is argued that this assumption of invulnerability rests in part in our belief that the world is comprehensible and orderly. We regard what happens to us as controllable and believe that we are protected from misfortune if we engage in sufficiently careful behaviour (Janoff-Bulman, 1985; Janoff-Bulman, 1992). The writer argues that we believe that we are protected from misadventure by being good and worthy people and that people get what they deserve in life. Thus we sustain the belief that the world is controllable. Once again this assumption is destroyed when trauma strikes. The world no long seems to make sense. "Why did this happen to me? (Janoff-Bulman, 1985, p. 20; Janoff-Bulman, 1992, p. 8-11).

Generally people operate under the assumption that they are worthy, decent people. This belief supports a healthy self-esteem. Trauma activates negative images of self, such as being helpless, frightened, out of control and needy. These negative self images contribute to a revision of one's self-concept (Janoff-Bulman, 1985, p. 22; JanoffBulman, 1992, p. 11-12).

In coping the survivor strives to make meaning out of the trauma by utilising a number of coping strategies. Some of these strategies are common to other coping models discussed earlier in this chapter. These include assigning new meaning to the trauma; to self as trauma survivor; and to the world in which the traumatic events occur (Janoff-Bulman, 1985; Janoff-Bulman, 1992).

Making meaning out of trauma is a deeply personal and highly diverse process. Some individuals will adopt the belief that the accident endured has produced new-found

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strength and compassion. Others will transform their experience into creative pursuit or determined social action - embracing a survivor mission as part of their recovery. Still others will find spiritual answers to the questions "why?" and "why me?" Whatever the process, coping involves the reconstruction of meaning that is both life-affirming and self-affirming (Harvey, 1996).

Several coping strategies that are used to rebuild or interpret the assumptive worldview following a traumatic experience are suggested. These are re-defining the event, finding meaning, changing behaviour, and seeking social support (Janoff-Bulman, 1985; 1992).

Redefining the event functions to restore meaning so as to be consistent with one's assumptive world. This can be achieved through making downward comparisons to someone less fortunate, making comparisons on the basis of a favourable attribute, creating a theoretical worse scenario, construing benefit from the experience or the fabrication of normative adjustment standards (Harvey, 1996; Janoff-Bulman, 1985; Janoff-Bulman, 1992; Wills, 1987a).

Finding meaning involves an attempt to make sense out of or search for meaning in what has happened. It may involve attempting to find a purpose in what has happened. This is an attempt to re-establish a belief in an orderly and comprehensible world. Changing behaviour refers to actions to gain a sense of control or minimise the perception of vulnerability. In relation to physical disability an example might be mastery of physical/functional skills to regain greater independence (Janoff-Bulman, 1985; JanoffBulman, 1992).

Seeking social support is common to many of the models of coping discussed above. It helps to enhance self-esteem and helps to re-establish feelings of psychological wellbeing (Janoff-Bulman, 1985; Wills, 1987b). Janoff-Bulman found that the more support the earlier adjustment was achieved (Janoff-Bulman, 1985).

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Green and colleagues proposed a psychosocial model of coping, which is similar in concept to that proposed by Janoff-Bulman (Green et al., 1985). In the model proposed by Green and colleagues the primary sequence is the occurrence of the traumatic event (in this case spinal cord injury); the cognitive processing of the event and finally a resolution phase which could be either positive or negative adaptation in functioning. The processing is conceptualised as taking place both within the individual and within the social context or recovery environment (Green et al., 1985).

The cognitive/behavioural models of coping have made a major contribution to the advancement of the understanding of the adjustment process by developing and testing models that adopt a more integrative approach and more adequately address the complexities of the coping process. They however continue to be largely focused on the internal resources of the individual and their response. While environmental and systemic factors are acknowledged, they are not adequately integrated in the models discussed above.

STAGE THEORIES Stage theories of adjustment, which incorporate many of the aspects of coping which have been discussed above have dominated the literature about adjustment to chronic illness and disability for over 40 years (Garske & Turpin, 1998; Trieschmann, 1988). Stage theories assume that the coping process unfolds in a particular way (Wortman & Silver, 1991) and typically evolves through a number of phases that culminate in adjustment (Garske & Turpin, 1998). The development of the stage theories of adjustment has largely been based on concepts borrowed from the mental health and grief and loss areas of psychology (Trieschmann, 1988; Wortman & Silver, 1991). These theories fail to account for the enormous variation in human response to disability (Livneh & Antonak, 1997; Trieschmann, 1988). The stage theorists describe a number of phases that most people pass through on their journey towards adjustment, but are unable to consistently agree as to either the nature, sequence, or number of these stages. Shock, denial, depression, anxiety, anger, rebellion, restitution and finally adjustment are some

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of the stages conceptualised by the stage theorists (Garske & Turpin, 1998). Despite the great variance in these models, the stages described are essentially considered by their authors to be fixed in order, and each stage essential to achieve successful overall adjustment (Frank & Elliott, 1987; Frank, Umlauf et al., 1987; Trieschmann, 1988). Stage theories postulated that models of adjustment consisted of two (Guttman, 1976), three (Kerr & Thompson, 1972; Mueller & Thompson, 1950; Stewart, 1977-1978), and even five stages (Bracken & Shepard, 1980; Hohmann, 1975; Livneh & Antonak, 1997; Tucker, 1980). Successful negotiation of each stage of the process is essential to achieve a satisfactory long-term outcome (Livneh & Antonak, 1997).

Virtually all stage theories postulate that depression and prolonged psychological distress (grief) are necessary prerequisites for satisfactory adjustment (Buckelew et al., 1991; Keany & Glueckauf, 1993; Kerr & Thompson, 1972; Trieschmann, 1978; Trieschmann, 1988). "Chronic sorrow" is a term used to describe this grieving process coined by Hainsworth and colleagues (1994). Chronic sorrow is associated particularly with conditions that are not able to be resolved or ongoing. Thus sorrow may become chronic over time. It is really only in the last two decades that the stage theories of adjustment have been questioned. It is now well established that depression is not essential to satisfactory adjustment (Bodenhamer et al., 1983; Ernst, 1987; Judd et al., 1991; Judd et al., 1989; Trieschmann, 1988) and that in fact those who do not experience depression may actually cope better (Krause & Rohe, 1998; Malec & Neimeyer, 1983; Wortman & Silver, 1991). (See Chapter Two).

Some in the rehabilitation field contend that the stage theory should be regarded as a model as opposed to a fact in view of the lack of empirical evidence (Garske & Turpin, 1998). While the stage theories may assist in understanding a general model of progression towards adjustment they may not adequately address the ongoing nature of the process (Kendall & Buys, 1998; Yoshida, 1993). Kendall and Buys (1998) suggest that it may be more appropriate to view the process as a continuous life transition rather than a time limited process with an endpoint.

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Once again the stage theories of adjustment focus on the individual and fail to adequately acknowledge the disabling environments and systemic constraints that impact on adjustment and coping (Oliver, 1983).

SOCIOLOGICAL THEORIES As discussed above, the coping literature has developed largely within the tradition of psychology. As a result, much of the literature emphasises the individual and his or her cognitive and emotional processes. However coping does not take place in a social vacuum. Stressful events usually involve other people. Coping must therefore be viewed within a context and as part of a dynamic social process (Folkman, 1992, p44). The links between coping and social processes need to be further considered and developed.

Adjustment to disability from a sociological perspective often involves what is conceptualised as a "trajectory" (Albrecht & Levy, 1991; Corbin & Strauss, 1991; Corbin & Strauss, 1988; Glasser & Strauss, 1964) or "disability career" (Oliver et al., 1988). These concepts are used to portray the process of change in various life spheres in respect to the disability. "As a life event, disability has a serious impact on the life course because it typically calls for the reorganisation of social relationships, changes social meanings, and offers new opportunities while closing others. In this regard disability can have positive consequences and rewards" (Albrecht & Levy, 1991, p.7). Michael Oliver and colleagues (1988) use the notion of a "disability career" as a conceptual framework to explain the complex relationship between the individual and the social context and the meanings made of the experience by the individual. The concept of a career or trajectory course encompasses the multidimensional nature of the adjustment process and moves away from the idea of linearity to the concept of fluctuations in the adjustment process (Yoshida, 1993). Yoshida (1993) suggests the process may in fact have dual directionality rather than unidirectionality, which she describes as a pendulum process. Linear or stage models are also criticised because they fail to facilitate an understanding of the "disorder, unpredictability, and complexity" of the adjustment process (Rosenthal, 1996, p. 226).

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ECOLOGICAL MODELS The models of coping and adjustment discussed above are characterised by a relative under emphasis of environmental factors and the way they contribute to individual variations in response to the onset of disability. The clinical literature in particular, tends to overlook both the phenomenon of individual resiliency and the contribution of social, cultural and environmental influences to these adjustment processes (Harvey, 1996; Oliver, 1991).

A number of ecological models of adaptation have been proposed in the literature and these attempt to address some of the systemic, multidimensional and environmental aspects of coping and adjustment. Ecological models that deal with adaptation to life crises, major life transitions, and chronic illness or disability have been developed (Coulton, 1981; Livneh & Antonak, 1997; Schlossberg, 1981; Scofield, Pape, McCracken, & Maki, 1980; Trieschmann, 1987; Trieschmann, 1988). These models acknowledge that most people use multiple types of coping strategies, often at the same time, as well as acknowledging the context within which the individual operates (Mailack, 1979).

These ecological models classify the elements of adjustment essentially into those components that focus on the individual (physical and psychological aspects) and those that focus on the environment (physical and social aspects) (Livneh & Antonak, 1997; Schlossberg, 1981; Scofield et al., 1980; Trieschmann, 1987; Trieschmann, 1988). This focus impacts on the way in which services to assist the individual through the adjustment process can be targeted and delivered. It shifts the focus from the individual solely to also reflect the impact of the physical, political, cultural and social environments. It is conceptualised that balance or harmony between the person and the environment is disrupted when a crisis, such as the onset of a disability occurs, and that successful adjustment can only be achieved when the balance is restored (Coulton, 1981; Schlossberg, 1981; Scofield et al., 1980; Trieschmann, 1987; Trieschmann, 1988).

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For example, Schlossberg (1981) argues that adjustment to traumatic life transitions is dependent on the balance of the person's available personal, social and environmental resources or lack thereof as well as the difference between the pre-transition and posttransition environments. She further suggests that the process of adaptation is mediated by the following three sets of variables: Attributes inherent in the particular event Attributes inherent in the pre and post transition environments Attributes of the individual (Schlossberg, 1981)

The ecological model as proposed by Harvey (1996)makes the assumption that: " individuals are not equally vulnerable to nor similarly affected by potentially traumatic events. Instead both vulnerability and individually varied responses and recovery patterns are multi-determined by interactions among three sets of mutually influential factors: those describing the person/s involved and their relationship/s to one another, those describing the events experienced; and those describing the larger environment. Together these factors describe the personcommunity "ecosystem" within which the individual experiences, copes and makes meaning of potential traumatising events" (Harvey, 1996, p. 6). In a similar model, Trieschmann (1987; 1988) in her review of the coping process following spinal cord injury suggests the outcomes of the process are determined by an interaction between many variables. She describes people as a "mind-body system" and argues that coping with spinal cord injury is a process synonymous with the restoration of harmony or balance within the system. She labels three sets of variables, which interact with each other: 1. Psychosocial variables (P) (including: personality, self image, social skills, problem solving ability, education, work history, cultural and ethnic influences, gender, belief systems, spiritual outlook, coping style etc.) 2. Organic or health related variables (O) (including: intelligence, age, strength, endurance, medical complications, pain, physical function and severity of disability etc.)

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3. Environmental variables (E) (including: income, transport availability, environmental barriers, family and social support, availability of physical assistance, education and vocational resources, recreational resources, and access to medical attention and mobility/ADL equipment etc.) (Trieschmann, 1988) She conceptualises the process as an equation: B = f (P x O x E). That is behaviour (coping outcome/adjustment) is a function of the interactions between the psychosocial (P), organic (O) and environmental (E) aspects of the mind body system (Trieschmann, 1988, p. 27-28). Thus adjustment as defined by Trieschmann is "the process of restoring balance among the psychosocial, biological-organic, and environmental factors in one's life. If the imbalance cannot be corrected by curing the problems in the biologicalorganic facets of the system, then a new balance is achieved by making accommodations in one's psychosocial and environmental resources" (Trieschmann, 1988, p. 42).

In the ecological frameworks discussed above, less successful coping reflects not only the ongoing nature of individual distress, but also the ecological deficits of the larger environment/social systems (Harvey, 1996; Trieschmann, 1987; Trieschmann, 1988).

The advantage of these ecological models of coping is that they facilitate a better understanding of the multidimensional nature of the coping process. From a clinical perspective they facilitate the targeting of interventions that enhance the personenvironment relationship and focus on the existing strengths both within the individual and the environment. Ecological models of coping with disability move beyond the individual model of disability, with emphasis on individual impairment and inadequacies, to also address the disabling aspects of the environment and systems in which people with disabilities operate.

IMPLICATIONS FOR ADJUSTMENT TO SPINAL CORD INJURY One of the main reasons for studying coping and coping strategies is to understand why people differ so greatly in their responses to similar significant life events and how these differing responses affect overall adjustment outcomes (Gallagher & MacLachlan, 1999). 86

These insights from general theory help us understand the process of coping and adjustment following the onset of spinal cord injury, and identify factors that may be influential in the process.

"Every crisis presents both an opportunity for psychological growth and a danger of psychological deterioration. During the crisis a person is more susceptible to influence by others than during periods of stable functioning. Thus, a relatively minor intervention may drastically change the ultimate outcome. Therefore, crises present an unusual opportunity to positively influence coping ability and mental health. The successful mastery of life crises can constitute an important growth experience" (Moos & Tsu, 1976, p. 19). Thus understanding the crisis and coping processes presented by the onset of spinal cord injury is important if intervention strategies are to be successfully, planned, targeted and implemented.

"The ecological model reminds clinicians and researchers alike that most trauma survivors live in very complex and complicated worlds and effective interventions are those that achieve "ecological fit" within individually variant recovery contexts " (Harvey, 1996, p. 19). People with spinal cord injury are not alike. They are not a homogeneous group. Each person responds to his or her spinal cord injury in way that is unique to him or her. This in turn causes people around them to react in certain ways further contributing to the person's unique adjustment to disability. Thus people with spinal cord injury deal with their condition in individualised ways that are unique to that individual. Many factors may impact on how the person copes with spinal cord injury. These include the disability itself, the intraperson characteristics, the environment, available resources, and the culture/society as a whole. These variables further interact with each other. (Garske & Turpin, 1998; Trieschmann, 1988).

The ecological models (Coulton, 1981; Garske & Turpin, 1998; Schlossberg, 1981; Scofield et al., 1980; Trieschmann, 1987; Trieschmann, 1988) and particularly the model proposed by Trieschmann (Trieschmann, 1987; Trieschmann, 1988) represent comprehensive models of adjustment that facilitate the understanding of the process 87

aspects of adaptation. Trieschmann's model fully integrates the complex array of variables that may influence the adjustment process. The ecological models suggest that people use a variety of coping strategies, ranging from cognitive strategies to manage emotional concerns to problem solving strategies that resolve environmental concerns, as well as accounting for the influence of a variety of environmental and systemic factors and health related aspects of the body itself.

SUMMARY This Chapter has reviewed the existing literature and research, which has contributed to the current understanding of the coping and adjustment processes. Psychoanalytic ego psychology, trait/disposititional, cognitive/behavioural, stage, sociological and ecological theories of coping and adjustment have been discussed. Application of the theoretical perspectives has been explored in relation to the implications to people with spinal cord injury.

Chapter Four will present an overview of the research design and the methodology for the study. Conceptualisation and rationale for the study will be discussed, as well as the strengths and limitations of the study.

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CHAPTER FOUR METHODOLOGY

The previous two chapters have outlined and discussed the current level of knowledge and understanding of the adjustment process following spinal cord injury. This chapter will present an overview of the research design and describe the methodology utilised in the study. The research questions are presented, followed by a detailed discussion of the methods, sampling, measurement instruments and analysis. Conceptualisation and rationale for research design decisions are integrated in the discussion.

This is a study of 44 people who sustained a spinal cord injury and were discharged from hospital between November 1992 and March 1994. The study took place over 52 months with data being collected from the participants on five occasions over the three year period immediately following the participant's discharge from hospital. The study uses both quantitative and qualitative data to determine the impact of the injury on the adjustment of the participants over time.

OVERVIEW AND RESEARCH QUESTIONS As discussed in the previous chapters the research on adjustment following spinal cord injury has largely focused on the crisis period of adjustment while the injured individual is still in hospital or on identifying factors that are predictive of positive outcomes. The questions posed by MacDonald and colleagues (1987 p.342) about "how successful copers go about achieving their success" largely remains unanswered. In the context of Australian society attempts to address this question have been extremely limited (Craig, Hancock, & Chang, 1994; Craig, Hancock, Chang, & Dickson, 1998a; Craig et al., 1997; Craig, Hancock et al., 1994a, 1994b; Crisp, 1992a). Much of the research has failed to adequately account for the complexities of the process and the vast array of variables that impact on adjustment. As discussed in Chapter Three the ecological models of adjustment

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and particularly the model proposed by Trieschmann (1987; 1988) provide a useful framework to address these problems.

Thus it is crucial that an understanding of the processes of adjustment following spinal cord injury over time is developed, that adequately addresses the complexities inherent in the adjustment process and accommodates the various life spheres in which the individual operates as discussed in Chapter Three. To facilitate the development of the understanding of the process, variables that relate to successful outcomes and the strategies that are used by individuals to achieve these outcomes need to be identified. However understanding the process of adjustment is more complex than simply identifying variables that relate to adjustment. We need to develop an understanding of how these variables relate to each other and thus impact on the process.

Thus the purpose of this study is to explore the impact of spinal cord injury on the individual and the ways in which people react to and cope with the imposed conditions of a spinal cord injury over time. This investigation will be operationalised by asking the following questions:

1. What are the effects of spinal cord injury within the psychosocial, health related, and environmental life spheres of the individual who sustains a spinal cord injury?

2. What are the processes of adjustment following spinal cord injury over time?

3. What variables (psychosocial, health related or environmental) relate to successful adjustment outcomes?

4. What strategies are used to cope with and adjust to a spinal cord injury?

5. How do people with spinal cord injury perceive their satisfaction with life and how does this perception change over time?

6. What are the practice and research implications for social work from these findings?

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STUDY DESIGN A longitudinal study design was used to facilitate observation of changes over time. The study design incorporated both quantitative and qualitative methods of data collection using a semi-structured questionnaire. Objective tools to measure outcomes and collect quantitative data were used in combination with open-ended questioning or life history style interviewing to obtain qualitative data. This approach was a crucial aspect of the study because the aim was to understand the process of adjustment as well as measuring outcomes.

The study took place over the three years immediately following the individuals discharge from the Spinal Injuries Unit for their initial rehabilitation following injury. The total length of the study was 52 months. This three-year time frame was determined because these early years following injury is the time when most change is experienced in the adjustment of people sustaining a spinal cord injury. As discussed in Chapter Two, research indicates that during the first one to five years post injury, the risk of suicide, self-neglect, hospital readmission, divorce, and depression are high (Craig et al., 1999; Craig et al., 1997; Crewe, 1991; Crewe & Krause, 1990a; Crewe & Krause, 1992; DeVivo, Black et al., 1991; DeVivo & Richards, 1996; Krause, 1991, 1992c, 1992d; Krause, 1997, 1998a; MacLeod, 1988; Pilsecker, 1990; Trieschmann, 1988). However most of these variables return to rates similar to that of the general population beyond the three to five years period.

Each individual was interviewed at discharge from hospital, six months, 12 months, 24 months, and 36 months post-discharge (i.e. five data collection points). The interviews were all conducted personally by the researcher.

All of the discharge interviews were face-to-face interviews but subsequent interviews consisted of a combination of face-to-face and telephone interviews. This was necessary due to the large catchment area served by the Princess Alexandra Hospital Spinal Injuries Unit and a commitment to equality in describing the whole of the sample. Face-to-face interviews were always the method of preference for data collection, and whenever 91

possible interviews were scheduled to correspond with visits to Brisbane for routine medical follow-up for respondents from the outside the Brisbane metropolitan area.

Telephone interviews were conducted where it was not possible to arrange face-to-face interviews. The reliability of combining face-to-face interviewing and telephone interviewing is supported by Rintala and Willems (1991) who assessed a combination of these methods of data collection with spinal injured persons and validated their findings with data collected by trained observers. They found no significant difference in data collected by either method.

DEFINITION OF CONCEPTS Adjustment is a complex term to define operationally for research purposes. This is reflected in the lack of consistency of definitions used in the literature as discussed in the earlier two chapters. Much of the existing research has chosen to confine the study of adjustment to either, limited measurable behavioural aspects of adjustment, such as social or vocational activities, or to focus on a limited number of the many variables associated with adjustment, such as age, employment, etc. These narrow definitions of adjustment eliminate many of the research problems associated with operationalising the concept of adjustment but in so doing place a great number of limitations on the generalisability and applicability of the findings to clinical practice.

While each of these studies contributes to our understanding of the adjustment process in its own narrow definition of adjustment, they continue to present a fragmented picture of the process as a whole. Social workers work with individuals in a holistic way, taking into account their personal attributes, their support networks, their physical state and the impact of their environment. It is therefore important to adopt a holistic approach to research if an understanding of the adjustment process that informs social work practice in a meaningful way is to be gained. The strength of the social work approach to research is reflected in the extract from poem "IT, quoted below, (Kerr, 1989) which contributed

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to the commitment to struggle with the complexities of a research design that would adequately reflect the whole person within their social and environmental contexts.
While philosophers debate whether the whole is more than the sum of its parts or the whole is equal to the sum of its parts, What terrible ills we mortals make, by insisting The whole is the same as one of its parts. (Kerr, 1989)

You can fractionate and analyse it (adjustment) only for discussion purposes, but in actuality the whole is more than the sum of its parts (Trieschmann, 1988, p.30)

Therefore for the purpose of this study, the definition of adjustment proposed by Trieschmann (1988) will be adopted. She describes people as being a "mind-body system" and adjustment to disability is equated with a balance in life.

"The onset of a disability alters the balance of life and requires an adjustment to be made. But adjustment is a fluctuating phenomenon in any of our lives and at any time is the result of having achieved a balance among three major influences: Our psychological resources (P), our biological-organic state (O), and our environment (E). Thus.... adjustment is a function of the interaction of these variables" (Trieschmann, 1988, p.27). Trieschmann advocates that the only reliable method of operationalising adjustment is to assess the individual within the context of the systems or life spheres in which they operate and defines adjustment as the balance achieved within these spheres. In essence adjustment is a summary term to describe a multitude of individual behaviours across a time period and cannot be assessed by studying one aspect of life out of the context of the P, O, E system. (1988, p.249). This definition was also used by Crisp in the recent crosssectional Australian study (1992a).

Having introduced the definitions of concepts, the sections to follow introduce both the qualitative and quantitative aspects of the study commencing with the qualitative.

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QUALITATIVE ASPECTS OF THE STUDY In addition to the quantitative data discussed above, each person, who participated in the study, was interviewed at each of the five points of data collection, using a semistructured in-depth interviewing technique based on a topical life history approach (McCracken, 1988; Minichiello, Aroni, Timewell, & Alexander, 1995). In-depth interviewing is described as a "conversation with a specific purpose - a conversation between researcher and informant focussing on the informant's perception of self, life and experience, and expressed in his or her own words. It is the means by which the researcher can gain access to, and subsequently understand, the private interpretations of social reality that individuals hold." (Minichiello et al., 1995, p.61). This method of interviewing provides particularly rich and dense data.

The interviews for the study were all conducted by researcher. An interview guide with prompts was developed around the area of interest to guide the process. Participants were encouraged to talk about what the whole experience of having a spinal cord injury was like for them. It was explained that the researcher was interested in hearing their story about what this experience had been like for them. Prompts were introduced in the flow of the story telling to encourage participants to talk about: the changes the injury had caused in their lives, the difficulties they had encountered, their expectations of the future, the way their spinal cord injury had impacted on relationships and social roles, the things that helped them get through the experience, the things that had made it difficult to get by.

Each respondent was also asked what advice they would offer to someone going through a similar situation, what things had helped them the most and what things had they found most difficult. The wording and order of the questions was not fixed but the interview followed the lead of the informant.

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The researcher was known to all respondents through work in the Spinal Injuries Unit at the Princess Alexandra Hospital and had worked with people who had sustained a spinal cord injury for a number of years prior to the commencement of the study. Professional experience, technical knowledge of the medical/rehabilitation management of spinal cord injuries as well a thorough knowledge of the literature meant that the researcher was able to approach this project with substantial insight and understanding of the adjustment process experienced by people with spinal cord injury. Strauss and Corbin (1990, p.4147) describe this as theoretical sensitivity. Theoretical sensitivity can be both a strength and a risk factor in collecting and analysing qualitative data (see discussion of strengths and limitations of the study below).

Qualitative Data Analysis The qualitative interviews were recorded with written notes throughout the interview. Audiotapes were not used because of the technical problems associated with recording telephone interviews. Immediately following the interview the notes were re-written to reconstruct and flesh out the data to give a more complete record of the interview, as described above.

The analysis of the qualitative data was an ongoing process. The analysis began with jottings made during the interviews. These jottings were added to and expanded into "notes/memos" when the interviews were written up (Strauss & Corbin, 1990).

The data set was then read, re-read and re-read again. A process described as immersion, in the literature (Miller & Crabtree, 1992, p19). During this process, themes which became the basis of codes, were emerging. Strauss and Corbin (1990, p.65) describe this as developing conceptual labels. These codes or conceptual labels were written in the margins of the interview notes.

The notes were then re-read again, this time noting similar or like concepts and grouping these together into sub-categories. Once again these sub-categories were noted directly on the interview notes. 95

Using a word processor to copy and paste, sub-categories were compiled into separate documents. The original interview notes remained intact. A large number of categories emerged. As links were identified, the story of how people go about re-establishing equilibrium in their lives began to emerge. As described by textbooks on qualitative research at this stage the number of categories, their dimensions and their relations began to appear totally overwhelming. In the struggle to gain a meaningful understanding of the process of adjustment, some of the strategies suggested by Strauss and Corbin (1990) were found to be particularly helpful in trying to develop an understanding that adequately reflected the complexity and change processes of the real world of spinal cord injury. One of the first things Strauss and Corbin (1990, p.119) recommend is to make a commitment to a story line that represents the conceptualisation of the descriptive story about the central phenomenon of the study. As acknowledged by these authors sometimes making a commitment to a story line is difficult because one is so steeped in the data that everything seems important, or more than a single phenomenon seems salient" (Strauss & Corbin, 1990, p.119). Following this advice the following general descriptive overview of the story was written: The main story emerging is about how people with spinal cord injury go about making sense of what has happened to them as a result of their injury and how they go on to re-establish meaningful and satisfying lives. A complex interaction of physical, environmental, social and psychosocial factors impacts on the extent to which these goals are achieved.

This process facilitated the ordering of the analysis of how this story is conceptually represented in the data and defining the core category. None of the individual categories identified in the data were broad enough to describe the whole of the process so a name needed to be attached to the core category. The core category was thus labelled Adjustment to spinal cord injury. Having identified the core category, the dimensions and the properties of the core were further defined (Strauss & Corbin, 1990, p.123). The full details of the emerging model are presented in Chapter Six.

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QUANTITATIVE ASPECTS OF THE STUDY Working with the above definition there are three areas of life, psychological, physical or health related and environmental, that need to be considered in this study of the adjustment process following spinal cord injury. Thus the data collected is clustered around these three domains. Basic demographic data including age at injury, gender and marital status were collected at the initial interview, as were injury details, which included the level of the spinal lesion, and the completeness of the injury and cause of injury. Psychosocial resources of the individual were measured by considering depression, life satisfaction, education and vocational activities. Variables that were measured to give a picture of the individuals health state included self-reported medical problems, pressure sores and hospital admissions. The environmental factors that were considered in this study were financial resources, environmental accessibility, and personal assistance. These variables are identified in Chapter Two as important indicators of adjustment. Table 4.1 provides a summary of the variables studied and the tools used to collect data.

Measurement Considerations and Instruments To effectively implement this study a number of decisions needed to be made to identify appropriate measurement tools that could adequately address the range of variables to be studied as outlined above. The studies cited in the literature reviewed used a variety of types of measures to study aspects of these variables. Basically three types of measures have been used. These are: 1. Measures that have been specially designed for and validated with disabled populations, 2. Measures that have been specially designed for and validated with disabled populations, 3. Measurement instruments that have been developed for a particular study.

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Table 4.1 Summary of Variables

SUMMARY OF VARIABLES VARIABLE DEMOGRAPHIC VARIABLE Age at onset of injury Gender Age in years Male/Female Single Married Divorced Separated Cause of injury Paraplegia Quadriplegia Completeness of lesion HEALTH RELATED VARIABLES Self reported medical problems Pressure Sores Medical problems requiring attention since last interview Number of pressure sores Reduced sitting time Hospital admissions Number of hospital admissions Days in hospital since last interviewed ENVIRONMENTAL VARIABLES Fortnightly income Financial resources Source of income Any compensation received Access to appropriate mobility aids Access within home environment Access within their community Sources of assistance Type of assistance required Involvement of support agencies What needs are unmet/gaps in services Employed prior to injury? Yes/No Work History Depression Life satisfaction Education Employed since injury? Yes/No CES-D scale LSQ Years of education prior to injury Educational involvement since injury Complete/incomplete MEASUREMENT

Marital status Cause of Injury MEDICAL STATUS Level of lesion

Environmental accessibility

Personal assistance (if required) PSYCHOSOCIAL VARIABLES

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Many researchers have developed their own instruments to address the specific needs of their own research questions (Bodenhamer et al., 1983; Bracken, Shepard, & Webb, 1981; DeJong & Hughes, 1982; Dew, Lynch, Ernst, & Rosenthall, 1983; Krause, 1991; Schultz & Decker, 1985). This has largely been a matter of necessity because of the lack of empirical research in this area and the lack of suitable validated tools for use in the spinal cord injured population. Once again these tools developed do not adequately deal with the range of variables under consideration in this study.

A number of life satisfaction measures, such as the Index of Social Support, (James, Davies, & Ananthakopan, 1986) and Life Satisfaction Index, (Wilson, Elias, & Brownlee, 1985) have been used in the study of spinal injury populations. These scales have largely been developed for use in geriatric populations and many of the questions make them inappropriate for use in the much younger spinal cord injured population.

Krause and Crewe developed the Life Situation Questionnaire (LSQ) in 1974 for use in a follow-up study that has now become known as the Minnesota Longitudinal Study of people with spinal cord injuries (Crewe, 1996; Crewe & Krause, 1990a; Krause, 1991, 1992d; Krause & Crewe, 1987; Krause & Crewe, 1990; Krause & Crewe, 1991b). It is designed to collect information on a range of issues/behaviours relevant to adjustment following spinal cord injury including social and work activities, educational involvement, medical/ healthcare needs, the need for assistance, life satisfaction, problems of life and self-rated adjustment (Krause, 1990). Life satisfaction, problems of life and self-rated adjustment are subscales derived by combining items within the LSQ.

The Life Satisfaction subscale of the LSQ consists of 11 life satisfaction items that are measured on a 5-point Likert scale ranging from 1 (very satisfied) to 5 (very dissatisfied). The items included in this scale are: living arrangements, employment, financial means, social life, sex life, general health, family relations, recreational opportunities, life opportunities, emotional adjustment, and the amount of control over their life. Krause (1992c) subjected The Life Satisfaction subscale to SPSS principle axis factor analysis

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with a varimax rotation to derive two factors, General/Interpersonal Satisfaction and Economic Satisfaction.

The results from Krause (1992c) revealed that eight items in the factor analysis loaded on the General Satisfaction Scale. These were social life, sex life, general health, family relations, recreational opportunities, life opportunities, emotional adjustment, and control over life; and two items employment and financial satisfaction loaded on the Economic Satisfaction scale. Living arrangements did not load on either factor and was dropped from the analysis in the Krause study (1992c).

In the present study the same 11 life satisfaction items were administered at each of the four points of post-hospital discharge follow-up. Recognising that the limited sample size in this study would preclude definite conclusions, the SPSS version of principle axis factor analysis with varimax rotation was applied to the responses at each point of collection. SPSS principle axis factor analysis extracted three factors with eigenvalues greater than 1. A two-factor solution was forced with the two factors explaining 54% of the variance. Even with this small sample, the items loaded in a way that was consistent with that reported by Krause (1992c). For the purposes of comparison and consistency it was decided to report this scale in the same was as reported by Krause. The scores on each item for the subscales, General Satisfaction and Economic Satisfaction were then summed to give a score for these subscales. Complete details of the factor analysis are reported in Appendix One.

The Problems of Life Subscale is a bank of 16 questions which asks respondents to indicate on a five point Likert scale the extent to which they experience problems with various aspects of life, with higher scores indicating greater problems. The Problems of Life Scale was also submitted to the SPSS version of principle factor analysis but no stable factor structure was able to be extracted and the factor structure reported by Krause and Crewe (Krause & Crewe, 1990) could not be confirmed for the data set generated by the study. This was probably due to the small sample size in the study. Full details of the factor analysis are discussed in Appendix Two.

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The LSQ was assessed to be more comprehensive and appropriate, than any of the other scales reviewed and a copy was requested from the authors. This was reviewed and has been incorporated in the questionnaire used in the present study. Permission for its use was obtained from the author Nancy Crewe.

Depression was not measured by the LSQ and a depression measure was required for the study. Other researchers have chosen to use well-respected and validated measures developed for use in non-disabled populations. This is often felt to offer greater validity but often factors that may complicate the use of these scales in spinal cord injured populations are neglected. For example the General Health Questionnaire (GHQ) was noted to be a reliable screening device with well documented validity for general and psychiatric populations (Banks, 1983; Bridges & Goldberg, 1986; Goldberg, 1986; Goldberg, 1978; Romans-Clarkson, Walton, Herbisen, & Mullen, 1988). However, some of the questions of the GHQ could potentially distort the results because they might be influenced by some of the actual symptoms of spinal cord injury. Thus for this study it was not considered an appropriate measure unless cut-off points were adjusted or questions modified. Thus it was rejected.

The other depression scale that is used commonly in spinal cord injuries studies is the Beck Depression Inventory (Frank & Elliott, 1989; Frank, Elliott, Buckelew, & Haut, 1988; Frank, Umlauf et al., 1987; Howell et al., 1981; Judd et al., 1989; MacDonald et al., 1987; Richards, 1986a). Again it was noted that the somatic items in this scale actually reflected symptoms of spinal cord injury. Therefore concerns were raised about its internal validity despite its wide use in spinal cord injured populations and it's generally acceptability.

In light of the above discussion the Center for Epidemiological Studies Depression Scale (CES-D) was used in this study. It was developed for research purposes to measure depressive symptomatology in general population samples. It is designed primarily as a research or screening tool and is not a diagnostic tool (Devins & Orme, 1985; Radloff,

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1977). The fact that somatic items, actually reflecting symptoms of spinal cord injury are avoided in the CES-D makes it attractive for studies with spinal injured populations and it has been used in a number of studies of populations with spinal cord injuries (Cairns, Adkins, & Scott, 1996; Coyle et al., 1994; Crisp, 1992a; Daverat, Petit, Kemoun, Dartigues, & Barat, 1995; Marcus J. Fuhrer et al., 1993; Gerhart, Weitzenkamp, Kennedy, Glass, & Charlifue, 1999; Rintala et al., 1992; Rintala et al., 1994; Romano, Turner, & Jensen, 1992; Schultz & Decker, 1985; Turner & McLean, 1989; Weitzenkamp, Gerhart, W, Whiteneck, & Savie, 1997; Young, Rintala, Rossi, Hart, & Fuhrer, 1995).

The CES-D is a 20 item self-report questionnaire that takes approximately 10 minutes to complete. The respondent's scores are summed across the 20 items with scores that can range from 0-60, with higher scores indicating more depressive symptomatology. Recommended score interpretations are as follows: 0 - 15.5 = Not depressed 16 - 20.5 = Mild depression 21 - 30.5 = Moderate depression < 31 = Severe depression (Barnes & Prosen, 1984)

High internal consistency, test-retest stability, and concurrent validity with other clinical evaluations and self-report criteria have been reported in samples of both general disability and spinal cord injury (Coyle et al., 1994; Devins & Orme, 1985; Radloff, 1977; Rintala et al., 1994). A high level of internal consistency is reported in all studies. Radloff (1977) reports Cronbach's alpha coefficients ranging from .84 to .90 and correlations with other depression measures that ranged from .50 to .70 indicating moderately good concurrent validity. Conbach's alpha coefficients ranging from .83 to .95 have been reported when the CES-D was administered to samples of people with spinal cord injuries (Coyle et al., 1994; Rintala et al., 1994; Turner & McLean, 1989) indicating high internal consistency. In this study Conbach's alpha coefficients of .94 (at discharge), .94 (at six months), .94 (at 12 months), .93 (at 24 months), .86 (at 36 months) were found for the CES-D. Thus the internal consistency and validity of this scale are

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well established (Coyle et al., 1994; Crisp, 1992a; Radloff, 1977; Rintala et al., 1992; Rintala et al., 1994; Turner & McLean, 1989).

Analysis of Quantitative Data The quantitative data were analysed initially using descriptive techniques and these are presented in Chapter Five to give a full picture of the group demographics. The demographic data are presented to build a picture of the sample being studied and to establish its representativeness of both the Queensland spinal cord injury population and broader spinal cord injury populations. Data on the outcome measures is presented using descriptive techniques and repeated measures analysis of variance to document the outcomes achieved and how these outcomes changed over time.

Trends were identified and formally statistically evaluated using repeated measures analysis of variance models. Before analysing the repeated measures data all continuous dependent variables were checked for approximate Normality using the following criteria; mean within 10% of the median, skewness and kurtosis coefficients within 3, and symmetry of frequency distribution (histogram). Natural logarithmic transformations were taken of any variables identified to be non-Normal according to these criteria. In such cases, medians and ranges were presented as summary statistics rather than means and standard deviations. There was substantial missing data over time for 12 respondents. Their automatic exclusion in a conventional repeated measures analysis of variance approach to consider trends over time in life satisfaction and depression would have compromised the statistical power of the study. Hence to retain the repeated measures design while maximising the amount of usable information, data were analysed assuming a split-plot design where the effect of an independent variable, for example level of disability, was the whole plot treatment, and the time effect was the subplot treatment. The respondents within disability effect served as the replicated term, which was used to test the effect of disability. Respondents were considered a random effect in these models. The GLM procedure in the Statistical Package for Social Sciences (SPSS) Version 10 was used for these analyses.

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Determinants of clinical levels of depression were also considered. For these analyses, depression was defined as a categorical variable where subjects scoring CES-D over 20.5 were considered depressed, and those below not depressed. The SUDAAN Statistical Package was used to fit logistic regression models that considered the association of various independent variables to clinical levels of depression. A generalised estimating approach to the solutions of the model equations (Shah, Barnwell, & Bieler, 1996) meant that all variables could be utilised, including those from partially incomplete records. The fitted models were also specified to account for the repeated assessments over time.

Statistical significance was quoted at the conventional p < 0.05 level (two-tailed). Modelbased post-hoc contrasts were defined to compare outcomes at each time relative to baseline.

The quantitative data is presented in such a way that one is able to gain a more comprehensive picture of the individuals in the sample, their outcomes and how they coped with the disabling experience of sustaining a spinal cord injury.

This picture is further illuminated by the presentation of the qualitative data that fills out the understanding of the process questions related to how these individuals were able to cope and the problems and issues they confronted.

SAMPLE The sample for this study was made up of a respondent group of patients consecutively discharged from the Spinal Injuries Unit of the Princess Alexandra Hospital between November 1992 and March 1994. The sample included all patients who were treated at the Princess Alexandra Hospital Spinal Injuries Unit for initial rehabilitation following a traumatic spinal cord injury and who agreed to participate. The aim was to recruit a sample of 50 consecutive patients who met the selection criteria.

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The only exclusion criteria were that there was no concurrent acquired brain injury or psychiatric illness that might inhibit effective communication. There were no exclusions due to the exclusion criteria.

Patients who met the criteria were personally approached by the researcher prior to their discharge from the Spinal Injuries Unit and asked to participate in the study. The purpose and nature of the study was explained, as was the length of commitment required. Participants were given an information sheet about the project and asked to sign a consent form acknowledging their understanding of the study and their willingness to participate. They were assured of confidentiality, anonymity and informed that they were free to decline or withdraw at any stage if they so desired without any implications for their entitlements to ongoing or future health care services.

Ethical clearance for the study was obtained from the Princess Alexandra Hospital Ethics Committee and the University of Queensland Ethics Committee.

A total of 51 patients who met the criteria for inclusion in the study were discharged during the recruitment period. Forty-nine patients (96%) agreed to participate in the study. The two patients who refused to participate in the study were patients who were severely depressed and both stated that they felt that they had nothing worthwhile to contribute. Otherwise the entire cohort of patients discharged during this period was successfully recruited into the study.

The cohort is considered representative of the overall population treated by the Spinal Injuries Unit. Analysis of the demographic data confirms that the age, gender, and type of injury sustained are consistent with the trends reported in the Annual Reports of the Spinal Injuries Unit (Hill, 1994, 1995, 1996, 1997) over the last ten years and also reflect the trends of the spinal cord injured population as reported in the international literature (Stover, DeLisa, & Whiteneck, 1995). Thus the cohort recruited for this study is

considered representative of the spinal cord injured population in Queensland and results

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from this study should be able to be generalised for the spinal injured population of Queensland. Demographic details of the sample are reported in detail in Chapter Five.

Five (10%) of the initial sample group were of Aboriginal and Torres Strait Islander background and came from rural remote Aboriginal communities. Due to lifestyle and cultural issues the follow-up methods adopted by this study proved inappropriate to study the adjustment process and outcomes of this subgroup. For example, access to a telephone often proved problematic. Cultural issues made it inappropriate to discuss the data and personal issues being collected over the telephone with respondents from rural and remote Aboriginal and Torres Strait Islander communities. The formal questionnaire proved to be a culturally inappropriate method of collecting data from this group of patients. An alternative method would need to be adopted to study the process of adjustment as experienced by this population sub-group. Thus the Aboriginal and Torres Strait Islander group was effectively excluded from the analysis leaving a respondent group of 44 individuals. In terms of external validity, the above comments about generalisability still hold true for the non-indigenous spinal cord injured population.

ATTRITION In longitudinal studies, sample attrition, or loss of respondents, is often a problem. Because longitudinal research relies on the repeated surveying of the same panel of respondents over time, attrition can pose a much greater problem than in cross-sectional research, where respondents can be replaced. Problems of tracing respondents and death, are factors that tend to increase over time. Attrition rates vary widely, but rates of more than 50% are commonly reported (Bergman & Magnusson, 1990; Farrington, Gallagher, Morley, St Ledger, & West, 1990; Menard, 1991).

To minimise the drop out rate in this study regular contact was maintained with respondents. As well as the outlined interview schedule, the Spinal Unit Outpatient Clinic provided a valuable source of contact. Contact was also able to be established with the next of kin as listed on the hospital medical record in an attempt to locate respondents

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who had changed address since the last interview. Persistence was required to maintain the fullest possible response rate. Respondents were often unreliable in keeping appointments for data collection, despite the fact that appointment times were prearranged, at times and places convenient for the respondent.

Despite the efforts discussed above to minimise the attrition rate in this study, 12 (26%) of the original 44 respondents (excluding the Aboriginal and Torres Strait Islander subgroup) were lost during the course of the three year study. Four (9%) respondents died during the course of the study. Seven (16%) respondents were unable to be located because they had changed address since the last interview, and one other person withdrew consent to participate. It is sometimes suggested that that those who are experiencing more adjustment problems are more likely to be represented in the attrition group (Bergman & Magnusson, 1990; Farrington et al., 1990; Krause, 1992d; Menard, 1991). To address this issue depression outcomes for the attrition group are compared to the sample mean in Chapter Nine.

DATA COLLECTION AND MANAGEMENT As discussed above, all of the initial interviews were face-to-face conducted at the time of the respondents' discharge from hospital, and were conducted at the Spinal Injuries Unit. Prior to the first interview the purpose of the project and the research process was explained and informed consent obtained. Subsequent interviews (6 months, 12 months, 24 months and 36 months) followed a similar structure but utilised a combination of faceto-face and telephone interviews as described previously in this chapter. Interviews took between 45 minutes and one and half-hours to complete depending on the responsiveness of the participant.

The structured (quantitative) component of the questionnaire was administered before engaging the interviewee in the in-depth interviewing stage. This allowed for a breaking the ice period in the early stage of the interview which facilitated more frank communication during the in-depth interviewing stage. On occasions the questionnaire

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would stimulate some discussion about the experience of spinal cord injury. Sometimes it was difficult to differentiate when the questionnaire had been completed and the in-depth interview commenced. In practice the two parts of the questionnaire/interview became intertwined at times. Qualitative aspects of the interview were recorded as documented earlier in this chapter.

For interviews conducted over the telephone, a copy of the questionnaire was posted to the respondents at the time the appointment for the interview was arranged for the six, 12, 24 and 36-month interviews. Respondents were given the instruction that it was not necessary for the questionnaire to be completed prior to the interview but it would be helpful to have it as an aid during the interview. This was to facilitate the explanation of the Likert scales that could be difficult to describe when interviewing over the telephone. The questions were presented verbally and the respondents answers were recorded on the questionnaire by the interviewer. This was to avoid embarrassment for the respondent related to possible literacy problems or restricted hand function related to quadriplegia.

All paper copies of questionnaires and interview notes were stored in a secure office and in a locked filing cabinet to ensure confidentiality of all data. Computer files were protected by a secure password.

STRENGTHS AND LIMITATIONS OF THE RESEARCH STRATEGY The longitudinal design of this study is considered the strength of the study. The literature reviewed reveals that the adjustment to spinal cord injury occurs over an extended period of time (Cook, 1982; Crewe, 1991; Krause, 1992c, 1992d; Krause, 1997, 1998a; Krause & Crewe, 1990; Krause & Dawis, 1992; Pilsecker, 1990; Woodrich & Boland Patterson, 1983). However, there is only one long-term study of adjustment outcomes in spinal cord injured populations. This is the Minnesota Life Situation Study, which is now collating 20 year data from their sample (Krause, 1998b). The Minnesota study suggests that improvements in overall adjustment continue for up to 15 years and perhaps even for the

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whole of life. Krause suggests that The notion that there is an end point to adjustment does not seem to be justified (Krause, 1992d, p.566).

Many researchers have advocated a longitudinal approach to the study of long-term adjustment to spinal cord injury (Craig et al., 1999; Craig, Hancock et al., 1994a; Crisp, 1992a; Decker & Schulz, 1985; Hansen et al., 1998; Hanson et al., 1993; Keany & Glueckauf, 1993; Krause, 1992d; Krause & Crewe, 1987; MacDonald et al., 1987; Trieschmann, 1988). After her thorough and comprehensive review of the literature relating to the psychological, social and vocational issues of spinal cord injury Trieschmann concludes with recommendations for future research directions (1988). The third of her six recommendations is: "Study the styles of coping with spinal cord injury. The impact of SCI on behaviour needs to be studied along with the kinds of adaptations that occur over time. We need longitudinal research to study the types of coping strategies that people use to deal with the environment" (Trieschmann, 1988 p.303).

Crisp (1992a) in the Australian cross sectional study of long term adjustment also concluded that a longitudinal study design is the preferred method of investigation. "... few studies have indicated whether there are major differences in the short- and long-term adjustment to SCI; that is whether the correlates of satisfactory coping at one time are similar to the correlates of coping at a later date. A longitudinal study would be desirable..." (Crisp, 1992a, p.43). The longitudinal methodology adds strength to the research design because the questions of interest are largely questions of process.

The longitudinal design has many advantages over the alternative cross-sectional methodology. A cross-sectional study would have involved making comparisons of aspects related to adjustment between cohorts of spinal injured persons grouped to represent various stages since injury. Differences observed would then be interpreted as representative of the changes experienced over time. Using different cohorts at different stages post injury gives only limited information about "the processes" of adjustment. This method would not necessarily contribute to the understanding of "how" adjustment actually changes with time.

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The prospective data collection minimises the risk of "memory decay" which is reported to increase longer recall periods (Menard, 1991). Any attempt to answer the how questions, using a cross-sectional study method would of necessity, rely on retrospective recollections of those being interviewed. There is evidence that respondent recall, forgetting or error increases as the interval over which the respondent is asked to remember increases (Menard, 1991). An additional recall concern was an issue that was largely based on clinical experience of the researcher. When interviewing clients who had experienced a spinal cord injury some years ago, the researcher had found that they tend to view the past through "rosy glasses". Thus the value of data based on people's recollections may not present a true picture of their experiences if they have, for whatever reason, internalised a memory that may have been experienced quite differently at the time.

A longitudinal study, which collects prospective data overcomes this issue and provides more reliable data. The longitudinal design allows for assessment of the initial adjustment issues presented at the time of discharge from hospital and for observation of how these changes are dealt with over time. Thus a longitudinal study has greater validity than other approaches to studying these questions.

Problems related to obtaining a representative sample were overcome because it was possible to draw a sample group of consecutive patients discharged from the Princess Alexandra Hospital Spinal Unit which treats all patients who sustain a spinal injury in Queensland. The whole cohort was recruited and as discussed above the respondent group was considered representative of the entire population of newly injured patients treated in Queensland in terms of age, gender, cause and types of injury sustained.

An additional benefit of the longitudinal approach is that the study has been established in such a way that it has the potential to be extended to allow for a longer period of study beyond the initial three years, if warranted.

As discussed above, sample attrition, or loss of respondents, is often a problem in longitudinal studies (Bergman & Magnusson, 1990; Farrington et al., 1990; Menard,

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1991). Despite rigorous and persistent efforts to track panel members there was still a 26% attrition rate over the course of the study (including those who died). While this is not unusual for longitudinal studies it is a substantial loss of respondents. There is a risk that those who are lost to follow-up may have been those who experienced the most change (Schutt, 1999). Details of the group of respondents who were lost to follow-up are presented in more detail in Chapter Nine. Statistical procedures as described above were employed to minimise the impact of data lost through attrition on the study outcomes.

It is important that the adjustment process is understood from the viewpoint of the individual who has experienced the injury. The semi-structured qualitative interviewing methodology utilised in this study provides valuable insights into the interpretations of reality held by people with spinal cord injuries and how their perception of that reality changes over time. The richness of this data could not be duplicated by a survey method alone.

A longitudinal panel design, which allows different views of the same phenomena to emerge, results in a deepening of our understanding (Begley, 1996; Bryman, 188; Krantz, 1995; Morgan, 1998; Sechrest & Sidini, 1995; Shadish, 1995). In addition the findings are confirmed by contrasting information from different sources, providing an additional validity check. The qualitative data gives a deeper understanding and enriches knowledge in a way, which enhances the whole study. The longitudinal nature of the qualitative data allows for the development of a more comprehensive understanding of the process of adjustment over time as opposed to the snapshot view offered by much of the contemporary research.

Adopting a definition of adjustment grounded in the ecological perspective allows for the whole process to be examined in a way that is more appropriate to social work practice and avoids the fragmentation that occurs in many other studies. Operationalising the concepts in this way facilitates a comprehensive report on the process of adjustment as experienced by persons with spinal cord injury over time being developed. It is this

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aspect of this study that distinguishes it from other studies to date and makes it more applicable to social work practice.

It is acknowledged that analysis of qualitative interviewing can be subject to the interpretation bias of the researcher. Although this is a risk, the advantages of qualitative data are that it is able present complex and rich understandings of the perspectives of the respondents that outweigh the disadvantages. It can facilitate the process of developing an understanding that is well integrated, but can also prevent the researcher from seeing things that may have become entrenched in one's approach (Strauss & Corbin, 1990). Because of the researchers intimate knowledge of the area as well as pre-existing professional relationships with many of the informants, it was necessary to constantly stand back and examine the fit of the emerging understanding and the reality presented within the data. This was further facilitated by the longitudinal design of the study, because emerging insights could be verified over time.

SUMMARY This chapter presents the justification for the methodology and measurement decisions for the study. The decisions are grounded in an understanding that adjustment is a complex concept, that involves the restoration a sense of balance in ones life following a traumatic event, in this case spinal cord injury. This restoration of balance involves the psychosocial, health related and environmental spheres of ones life (Trieschmann, 1987; Trieschmann, 1988). The study design is robust, combining both quantitative and qualitative methodologies in a longitudinal fixed panel study design. Measurement decisions are discussed as well as sampling, data collection, and data analysis. The conceptualisation and rationale for research design decisions are justified. Finally the strengths and weakness of the methodology are considered.

The next chapter will present the demographic and descriptive data, which will acquaint the reader with the respondent group. As the thesis develops the story of adjustment for this group of people with spinal cord injury will progressively unfold. Chapters Six,

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Seven and Eight will reveal the voices of the respondents as the qualitative data of their experiences is presented. Chapter Nine will further develop these themes by discussing the quantitative outcome data collected with the structured component of the questionnaire. This approach to the data presentation will provide a rich source of information about the group studied and the adjustment outcomes achieved. A comprehensive model of how people cope with spinal cord injury and the subsequent disabling conditions will begin to emerge as the story of the respondents unfolds.

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CHAPTER FIVE WHO SUSTAINS A SPINAL CORD INJURY?

Chapters Five, Six, Seven, Eight and Nine will report on the effect of spinal cord injury on the lives of the participants and how they were able to cope with or adjust to the impact of their spinal cord injury and its resultant disability. Chapter Five will present the descriptive demographic data of the participant group. The demographic data establishes a picture of "who" it is that sustains spinal cord injury. Themes related to the adjustment process are identified and explored through the analysis of the qualitative data presented in Chapters Six, Seven and Eight. The qualitative data allows the voices of the participants to be heard and the next layer of the story is developed by the examination of the life history data. The qualitative data analysis facilitates the understanding of the realities and complexities of the adjustment process.

Chapter Nine will further develop a picture of the impact of spinal cord injury by examining the consequences of injury on various psychosocial, health, environmental and economic variables on the lives of the participants. The quantitative data, presented fully in Chapter Nine provides a rich source of data about the outcomes achieved, timeframes and the relationships between variables.

Thus the following five chapters develop the story about how people who sustain a spinal cord injury go about accommodating the resultant disability within their lives.

As discussed in the literature reviewed in Chapters Two and Three adjustment is a complicated concept and represents the complex interaction of many variables in the psychosocial, health related, and environmental life spheres (Trieschmann, 1987; Trieschmann, 1988). The data collected were clustered around these three life spheres and form the framework of the story about the adjustment outcomes achieved by the respondents. From this perspective adjustment can best be understood when it is

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considered within the multidimensional context of the systems in which the individual functions. The unique contribution that social work offers in the developing understanding of this process is "its traditional recognition of multidimensionality in its approach and practices. The (social work) researcher cannot 'slice out' one aspect of social reality without including the others: he or she must unpack rather than limit complexity" (McDermott, 1996,p. 6).

WHO ARE THE PEOPLE WHO SUSTAIN SPINAL CORD INJURY? The participant group will be described in terms of the following characteristics: age at onset of injury, gender, marital status, educational background, geographical distribution, living arrangements, income, source of income, type of injuries sustained, and cause of injury. As described in Chapter Four the sample consisted of a cohort of 49 particpants with spinal cord injury. The data presented in this chapter represents the data collected at the time of discharge from hospital and describes the whole cohort.

Age at Onset of Injury Age at the onset of injury of the participants was typical of the overall Queensland, Australian and international trends in the spinal injured populations, with the young adults being more heavily represented (Gerhart, 1991; Go et al., 1995, p27; Hill, 1994, 1995, 1996, 1997; O'Connor & Cripps, 1998, p3). Fifty-five per cent of the sample was under the age of 30 years at the time of their injury (See Figure 5.1 below). This compares with 57% of the spinal cord injuries reported in the National SCI Database in the United States being under the age of 30 years (Go et al., 1995, p27). The worldwide increasing trend of older people experiencing spinal cord injury was also reflected in this respondent group with 8.2% being over the age of 60 years. This is attributed to the increasing mean age of the general population, combined with the better health and more active lifestyles of the ageing population both in Australia and worldwide.

The age of the respondents ranged from 16 years to 72 years at the onset of injury. The mean age was 32.3 and the median age was 27.

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The young overall age of the respondents raises some concerns about the impact of the injury and their subsequent adjustment process. More than half of the respondents were young males (under age 30 years) and were at the life stage of choosing and developing careers and establishing relationships and starting families.

Figure 5.1: Age at Injury

40

30

31

24 20 20

10

10 8 6

Percent

0 16-19 20-29 30-39 40-49 50-59 Over 60

Age at Injury

Gender The gender mix of this sample was also similar to that of the general spinal cord injured population. The sample consisted of 46 males (90%) and five females (10%). The male predominance was characteristic of the reported demographics of studies of traumatic spinal cord injury (Levi et al., 1996) and consistent with the demographics of the Queensland spinal injured population as reported in the Spinal Injuries Unit Annual reports (Hill, 1994, 1995). However, females have been reported in the international and Australian literature to account for up to 20% of traumatic spinal cord injuries (Hill, 1994, 1995; Levi et al., 1996). Thus, the female population may be slightly under represented in this sample.

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Marital Status Fifty-three per cent of the sample was single (never married) at the time of their injury, 39% were married, 6% were separated and 2% were divorced (See Figure 5.2). This high percentage of single people was consistent with the young mean age and life stage of the group. This finding was consistent with trends reported in the National Spinal Cord Injury Database in the United States, which reported that 53.5% of people with spinal cord injury treated in the Model Systems in the United States were single at the time of injury and 30% were married, 9% divorced and 4.4% separated (Go et al., 1995).

This high percentage of single young people raises concerns about the injured individuals potential to engage in and maintain meaningful relationships, courtship and marriage, if the consequences of the injury and subsequent disability impact on their social activities and community involvement.

Figure 5.2: Marital Status at Discharge

60

50

53

40 39 30

20

Percent

10 6 0 Single Married Separated Divorced

Marital Status at Discharge

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Educational Background of the Respondents The educational background of people who sustain a spinal cord injury has received little attention in the literature (Alfred et al., 1987; Crewe & Krause, 1990a; DeVivo & Richards, 1992). It is frequently seen as a predictor of re-employment status following severe injury such as spinal cord injury (Crisp, 1990a, 1990b; Krause, 1992b; Krause & Anson, 1996b; MacKenzie et al., 1987; McShane & Karp, 1993; Murphy et al., 1997).

Figure 5.3: Pre-Injury Educational Level

50

45 40

30

20 18 14 10 12 10

Percent

0 Primary Sc hool Year 12 or Less TAFE/T rade University Year 10 or Less

Education Level

The pre-injury educational background of the sample ranged from five individuals who had not completed primary schooling to two individuals who had completed university degrees (See Figure 5.3). Sixty-nine per cent of the respondents had no post high school education compared with 56.1% of the Australian general population who have no post school education in 1992 (Castles, 1992). Fifty five per cent (n=27) had 10 years or less of formal schooling when injured and only 43% had completed high school or obtained a trade or tertiary qualification. The Australian Bureau of Statistics similarly reports that only 43.9% of the general population (aged 15-69 years) had post high school qualifications (Castles, 1992). Thus this group of respondents was very similar to the 118

general Australian population in regards to their educational background. However, this finding is of some concern because the literature suggests that low education level is one of the most important factors in contributing to unemployment following spinal cord injury (DeVivo et al., 1987; Go et al., 1995; James, MJ, & JS, 1993). Given the severity of the disability sustained by the respondents, their lack of tertiary qualifications raises concerns about the potential for future employment.

Income Mean and median income received by the sample group was $423 and $321 per fortnight at the time of discharge from hospital respectively. The range was from no income at all to $1270 per fortnight at discharge. At discharge more than 70% of the sample had an income of less than $400 per fortnight. Pre-injury income data was not collected but the pre-injury employment situation of the respondent group would suggest that the mean income would have been higher prior to injury (See discussion of employment situation in Chapters Eight and Nine). Figure 5.4: Source of Income at Discharge

Personal Income 34.1% Social Security 45.5%

Other Insurance 9.1% Worker's Compensation 11.4%

Forty six per cent of the individuals in this sample were dependent on government Social Security benefits at the time of their discharge from hospital. Workers Compensation or Disability Insurance was the main source of income for another 20.5%. See Figure 5.4. 119

This low level of mean income for the group of severely disabled individuals is an indication that adjustment difficulties may be experienced (Kerr & Thompson, 1972; Krause & Crewe, 1990)

Twenty-five (51%) of the respondents were pursuing some sort of litigation to recover damages or an insurance claim related to their injury (See Figure 5.5). This meant that they had a future expectation of an improved financial situation. The compensation received from litigation claims for spinal cord injuries is usually substantial, often in excess of a million Australian dollars. At the time of the study, claimants pursuing litigation claims often waited up to seven years before claims were settled in the courts. This meant that claimants were financially disadvantaged at a time when their needs were the greatest and this could have a lasting impact on their overall adjustment outcome. Changes in the Motor Accident Insurance Act since the commencement of the study has meant that people with access to Compulsory Third Party Insurance receive financial assistance in meeting the expenses of rehabilitation costs (including mobility aids and home modifications) incurred as a result of their accident. This has dramatically changed the situation for the better. Figure 5.5: Insurance or Litigation Claimants at Discharge
Other 18.4%

Compulsory Third Party Insurance 16.3%

None 49.0%

Disability Insurance 16.3%

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Cause of Injury Causes of injury are shown in the graph below (Figure 5.6). Cause of injury was grouped into five categories: road trauma, falls, acts of violence, recreational or sporting activities and other. It can be seen that road trauma is the major cause of injury, accounting for 41% of the injuries.

These findings were once again comparable to the cause of injury for the overall spinal cord injured population as reported in the SIU Annual Reports (Hill, 1994, 1995), the Australian National Injury Surveillance Register (O'Connor & Cripps, 1998) and the American National SCI Database (Go et al., 1995, p35-37).

Figure 5.6 Cause of Injury

50

40

41

30

20 18 16 10

20

Percent

0 Road Trauma Sports/Recreation Falls

4 Other Acts of Violence

Cause of Injury

Table 5.1 shows the comparison of cause of injury for the sample group, the broader spinal cord injured population of Queensland as represented by the injuries treated at the Princess Alexandra Hospital and the international cause of injury as reported in the U.S National SCI Database. Most causes of injury occur at similar rates across all three groups except for acts of violence. The data suggests that one would perhaps have a greater chance of sustaining a spinal cord injury in the USA through a violent act than in Australia (Stover et al., 1995, p35-36). 121

Table 5.1 Cause of Injury Comparison

Cause of Injury Sample National SCI Database (USA) Princess Alexandra Hospital 1986-1994

Motor Vehicle Falls Diving Other Sport Acts of Violence Other

40.8% 16.3% 10.2% 8.2% 4.1% 20.4%

44.5% 18.1% 8.5% 4.2% 16.6% 8.1%

45% 22% 11% 8% 4% 10%

Level and Type of Lesion As discussed in Chapter One level and type of lesion give an indication of the severity of the disability. Cervical lesions of the spinal cord result in quadriplegia, which causes the loss of movement and feeling affecting all four limbs and the trunk. Thoracic, lumbar and sacral lesions result in paraplegia, in which function is lost in the lower limbs only. Both levels of lesions can occur as either complete or incomplete lesions. Complete lesions result in total loss of all sensory and motor function below the level of the lesion. In incomplete lesions some sensory or motor function is spared. There is a great variability in the degree of disability experienced by people with incomplete spinal cord lesions.

This sample once again is similar to the wider spinal cord injured population. There were 60.7% (n = 31) persons with quadriplegia level injuries and 39.2% (n = 20) with paraplegia level lesions. The percentage of individuals who sustained a quadriplegia level injury is perhaps slightly higher than reported in the overseas literature. Go and colleagues report that 46% of individuals who sustain a spinal cord injury in the USA, have a quadriplegia level injury (Go et al., 1995, p 45). The Australian National Injury Surveillance Unit trend is slightly higher with 55% of reported spinal cord injuries having a quadriplegia level injury (O'Connor & Cripps, 1998, p 5). This slightly higher percentage of quadriplegia level injuries may be a function of the size of Queensland, the

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distances to travel between urban centres, the age of Queensland vehicles and the standards of our road system.

Thirty seven per cent (n = 19) of the injuries were complete lesions while 62.7% (n = 32) were incomplete (See Figure 5.7). The National Injury Surveillance Unit reports a similar national pattern with 39% of reported spinal cord injuries being complete lesions while 60% were incomplete lesions (O'Connor & Cripps, 1998, p 5). Ten (21%) of the participants were able to walk (with/without aids) at the time of discharge from hospital.

Figure 5.7 Level and Type of Lesion

30

20

22

10 10 7 9

Level of Lesion
Quariplegia

Count

0 Complete Incomplete

Paraplegia

Type of Lesion

Geographical Distribution Thirty-two participants (65%) came from urban living situations. This included 19 (39%) who resided in Brisbane or the surrounding districts and 13 (26.5%) who came from other metropolitan centres. Ten respondents (20%) came from more rural areas and seven were classified as residing in remote areas of Queensland (See Figure 5.8). There was a certain amount of subjectivity involved with the classification of areas as rural or remote based on the author's knowledge of the availability of health services and other support services 123

in the area. Remote included very isolated areas in the far north/northwest of Queensland, such as Cape York and remote Aboriginal Communities in Far North Western Queensland.

Figure 5.8 Geographic Distribution of the Sample

Remote 14.3% Brisbane 38.8% Rural 20.4%

Other Metropolitan 26.5%

SUMMARY This chapter has presented the data describing the demographics of the respondents in the study. It has established that the respondent group was representative of the spinal cord injured populations both in Australia and generally, in terms of age, gender distribution, cause and type/severity of injuries sustained. The respondents were largely young unmarried males, the majority of whom sustained their spinal cord injury as a result of motor vehicle and traffic accidents. Sixty one per cent sustained quadriplegia level injuries while the other 39% sustained paraplegia level injuries. As a group their mean income was low with the majority dependent on government benefits at the time of discharge from hospital. The data reported in this chapter indicates that the respondents needed to make considerable adjustments in their lives to accommodate the impact of their disabilities. In Chapters Six, Seven and Eight the qualitative data presents the story about the process of adjustment as experienced by the respondents. Coping strategies and a new model for understanding the adjustment process emerge from qualitative data and are presented in the next three chapters. 124

CHAPTER SIX DISRUPTION TO LIFE FOLLOWING SPINAL CORD INJURY

As discussed in the earlier chapters, adjustment to a sudden onset severe disability such as spinal cord injury is a process involving a series of complex interactions within the various life domains of the individual. Adjustment to spinal cord injury has traditionally been conceptualised in terms of grief and loss type theories characterised by stages of adjustment as discussed in Chapters Two and Three. These traditional approaches defined adjustment in terms of the individual's ability to adjust to or adopt the norms of the dominant societal situation and expectations. However such a narrow definition of adjustment neglects a whole range of uniquely individual factors and systems in which the individual functions. Any adequate understanding of these complex adjustment issues must, of necessity, struggle with the multidimensional factors within these systems to adequately inform the practice of social work and rehabilitation in a spinal cord injury setting. The starting point for this study was a commitment to examining the adjustment process from a holistic perspective incorporating the complexity and dynamic nature of the process.

The next three chapters are an example of qualitative research using a longitudinal design. Longitudinal designs are usually adopted in quantitative research and rarely used with qualitative methodologies. However adjustment is a dynamic process which occurs over time and is best examined by utilising qualitative methodologies over time. The richness of the data collected in this study illuminates the process as experienced by the respondents. To study this process using a quantitative approach only fails to provide a context and adequate understanding of why some people are "successful copers" and others are not (MacDonald et al., 1987).

The qualitative data was collected and analysed as described in Chapter Four and tells the story about the process of adjustment as presented. The main story emerging from the data is about how people with a spinal cord injury go about making sense of what has 125

happened to them as a result of their injury and how they go on to re-establish meaningful and satisfying lives. A complex interaction of environmental, psychosocial and health related factors impact on the extent to which these goals are achieved.

Chapters Six, Seven and Eight present the qualitative data from the study. Chapter Six presents the proposed model of adjustment following spinal cord injury, which emerges from the qualitative data analysis. This chapter also considers the impact of sustaining a spinal cord injury and the subsequent disruption to life as described by the respondents. Chapter Seven will present and discuss the strategies used by the respondents to cope with the disruption and disequilibrium experienced in their lives as a result of their injuries. Chapter Eight examines a range of factors identified by respondents, which interacted with or impacted on the effectiveness of their coping strategies.

MODEL OF ADJUSTMENT FOLLOWING SPINAL CORD INJURY A number of core themes emerged during the data analysis process and led to the development of a comprehensive model of adjustment grounded in the ecological perspective of coping (see Figure 6.1). The event of sustaining a spinal cord injury results in a disruption to the balance within the life spheres in which the individual operates. The injury itself is an assault to the physical body as described in Chapter One. This in turn results in a disruption to almost every aspect of an individual's life (e.g. loss of physical function, disruption to social and family roles, financial hardship, etc.). As a result of the disruption strategies are implemented to restore the equilibrium. The strategies utilised are influenced by a variety of complex inter and intra personal factors as well as social and environmental variables. This is represented diagrammatically in Figure 6.1. The two-way arrows in Figure 6.1 represent the complex interactions that occur between the various life spheres, in both directions, as the individual strives to restore the balance in his/her life. The effectiveness of the coping strategy or strategies are affected by the interaction of a variety of environmental and health related factors that are also operating within their unique set of life systems. For example having adequate financial resources can mean that the individual has options that may not be available to someone with more

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restricted financial resources. Financial resources can be used to purchase services or equipment that facilitate greater independence. Improved independence may result in a more positive outlook on life and enhance quality of life.

The impact of the interacting factors can have either a positive or a negative impact on the effectiveness of the individuals ability to use coping strategies to achieve adjustment. This interaction between the coping strategies adopted and the interactions with other life domains result in the outcome achieved. It is not however a simple equation of A + B = Adjustment Outcome. The interactions can be quite complex and several factors may be operating at any one time.

Spinal cord injury does not happen in isolation. The rest of life is not simply put on hold because the individual experiences a trauma. Both negative and positive life experiences still occur in the life of the individual who has sustained the spinal cord injury. Other health factors related to pre-existing health conditions, age or co-morbidities of the injury may interact in combination with the physical consequences of the injury to produce a unique set of health related factors that impact on the injured individual. In addition a wide range of environmental issues can have substantial influence on the adjustment outcome in interaction with all of the above considerations. All of these factors are in evidence in the data set and work in interaction with each other to produce a unique set of circumstances and outcomes for the individual.

The success or otherwise of these endeavours can be measured by many outcome indicators such as subjective well being, emotional state, vocational outcomes etc. The coping strategies and outcomes listed in Figure 6.1 are examples that emerged from the data set. However it is recognised that this may not be an exhaustive list of the strategies utilised or outcomes achieved by individuals who sustain a spinal cord injury due to the unique range of factors which impact on and interact with individuals and their circumstances.

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As described in Chapter Four the main story (or core category) to emerge from the qualitative data is about how people go about making sense of what has happened to them as a result of their injury and how they go on to re-establish meaningful and satisfying lives. A complex interaction of physical, environmental and psychosocial factors are evident and impact on the extent to which these goals are achieved. This core category is labelled "adjustment to spinal cord injury". A number of sub-categories emerged and were defined from the qualitative data set, which facilitates the conceptual order and further definition of the main story. The sub-categories are: sustaining a spinal cord injury, disruption to life adjustment, strategies to manage the disruption to life adjustment, factors that interact or impact on the effectiveness of the coping strategies and outcomes/consequences. These are shown in Figure 6.1, which outlines the proposed comprehensive model of adjustment, which emerges from the qualitative data set.

The qualitative data presented is structured around the model presented in Figure 6.1. Direct quotes from the data are used to give voice to the participants and maintain credence with the reality of the adjustment process as experienced by the respondents. The respondents are recognised as the experts in understanding the process. Professional interpretation of that reality is restricted to interpretation of the application of that knowledge to social work and rehabilitation practice. Quotes used in the text of the presentation were chosen for their representativness of the data and are referenced to the original data set by the identification number of the respondent and the page number in the data set transcripts. For example ID1: 30 refers to respondent number one and the quote is from page 30 of the qualitative data set. Direct quotes are in Italics. Some explanatory notes and substitutions for names of people or places (to protect confidentiality) have been added in regular text.

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Figure 6.1: Model Of Adjustment To Spinal Cord Injury

SUSTAINING A SPINAL CORD INJURY

INTRA-PERSON RESOURCES Personality Life Experiences Intelligence Education Health Physical Fitness

DISRUPTION TO LIFE Physical Trauma/Paralysis Loss of Physical Capacity Loss of Control Loss of Dignity Loss of Family Roles Loss of Social Roles Emotional Disequilibrium

STRATEGIES TO MANAGE DISRUPTION TO LIFE Hope Determination Keep busy Reconstruction of Meaning Constructing Benefit from the Experience Making Downward Comparisons Why Me? Acceptance Religious Beliefs Engaging in Social Action Helping Others Make the World a Better Place Regaining a Sense of Control Over Life Information Seeking Setting Goals Reframing/Maintain a Positive Attitude

OUTCOME/CONSEQUENCES Quality of Life Emotional Response Vocational Outcome Life Satisfaction Independence Control Over Life

FACTORS THAT INTERACT OR IMPACT ON THE EFFECTIVENESS OF THE COPING STRATEGIES Family Support Vocational Resources Peer Support Access and Mobility Friends Transport Community Supports Health/Medical Issues Financial Resources

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SUSTAINING A SPINAL CORD INJURY When a person first sustains a spinal cord injury it usually involves a traumatic event such as a motor vehicle accident, a serious sporting injury or any fall. As a result of the injury sustained the individual must endure a series of alienating experiences that can serve to frighten, isolate and instil a sense of powerlessness as discussed in Chapter One.

The emotional trauma may be further exacerbated if complicated surgical procedures or artificial ventilation are required, or if another person has been killed or injured in the accident particularly if this person was a close family member.

A young man who sustained a quadriplegia level injury when he dived into a waterhole in a creek and hit a submerged rock provided this account of his early hospitalisation experience and his reaction to it:

I knew as soon as I hit that rock what had happened. I just accepted it. There are 2-3 days that I don't remember at all. It was hard to take when I first did remember. I knew that I couldn't get out of the bed. I was fairly unco-operative while I was up in Acute (the Acute Care Section of the Spinal Unit). I had never had to stay one place for that long before. The tracheotomy was the worst thing. It was really scary. Everyone told me things would get better but I couldn't believe them. It felt like I was fighting against them. I had a problem with high calcium that made me throw up everything I ate. The nurses encouraged me to eat. The more they encouraged me the more I refused. Not being able to do things for myself and then having them do it for me made me feel hopeless. It made me feel like a baby. When I had the tracheotomy, I would try to tell them something and they would misunderstand and do something else. It was frustrating. I would get so upset. I was trying my best to communicate but no one seemed to understand. There was a long period of uncertainty. (ID41: 192-93).

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Three key concepts associated with sustaining a spinal cord injury are reflected in this discourse. There was the physical trauma of a diving accident, "I knew as soon as I hit the rock what had happened". In addition there was an awareness of the paralysis, "I knew I couldn't get out of bed" and the experience of being in hospital, which was different from any prior life experience. The above respondent (ID41) was clearly experiencing and able to describe the sense of alienation and powerlessness that derived from sustaining the spinal cord injury. The experience of being powerless in hospital and his attempts to regain some control, even if the attempts were at times counter-productive for his medical well-being were clearly evident. Many respondents described similar experiences.

Other respondents made comments that were representative of the initially traumatic and psychologically alienating experiences that resulted from the injuries they had sustained and the initial hospital treatment experience. Acute (The Acute care section of the Spinal Injuries Unit) really spun me out. I didn't know what was happening. It was like a house of horror. People just did things to you. They didn't explain anything to you. In Acute I don't remember much. I remember being hot and then cold. I remember the nurses' faces. I remember wanting to move but I couldn't. I remember being really frightened. I couldn't understand what was happening. . When I was still at the accident site, I knew that I had broken my back. I felt the loss of my legs. I knew they were gone. I felt like they just closed down on me. I still don't feel like I am fully in control of my life. Things happen that I can't change. I just feel overwhelmed by them." (ID29: 2627).

"It was a nightmare to start with. It still feels like that. Things still come into my mind, even when I'm awake I still have nightmares. I feel deserted. Hospital is terrible because it is a hospital. The staff are great. In fact everyone is great. They're really good here but it is still a hospital. (ID31: 66).

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"This was the first time I had ever been in hospital. I was very scared, especially in Acute. When I first got up (in a wheelchair) I was unsure how to relate to people when they talked to me. I was flown to (the local hospital) and then flown to Brisbane. Nobody explained anything to me in (the local hospital). The first explanation I got was after I arrived in Spinal Injuries Unit. My mates notified my parents. (ID2: 20-21).

The confusion and lack of comprehension of what is happening to them is evident in these excerpts from the data. There is a sense of confusion, fear, uncertainty and powerlessness that is unfamiliar to the respondents. There is also an emerging awareness of the physical consequences of the spinal cord injury. The combination of the physical losses and the psychological trauma result in the disruption to the prior state of life adjustment maintained by the respondents before their accidents.

DISRUPTION TO LIFE ADJUSTMENT The initial experience of a life threatening medical emergency, acute hospital care and lengthy hospital based rehabilitation all combine with the above factors, related to sustaining a spinal cord injury, to create a severe disruption to the injured individuals life adjustment. The disruption to life may be experienced as loss of physical capacity, loss of control, loss of dignity and loss of social and familial roles.

LOSS OF PHYSICAL CAPACITY Loss of physical capacity is a major contributor to the sense of disruption to ones life adjustment when a spinal cord injury is sustained. Loss of physical function contributes to a sense of hopelessness and helplessness:

"Not being able to do things, and then having them (the nurses) do it for me made me feel hopeless. It made me feel like a baby. (ID41: 192).

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"I miss being able to go to the beach with the kids. I can't get down to the beach on my chair. I miss being part of that kind of family activity. I can't get up off the ground to my chair when we are out. I can do it at home where I can transfer from the ground to a lounge chair and then to my wheelchair. I can't do that on the beach. It makes me feel like a lesser father. (ID1: 8).

LOSS OF CONTROL There can be a feeling (real or perceived) of powerlessness and loss of control over ones life and the decisions that affect it.

"When you're first in hospital you're just lying helpless in bed and "THEY" are in complete control - It takes a lot to kick up a stink and say things aren't right for you from your point of view." (ID10: 84).

"I still don't feel like I'm fully in control of my life. Things keep happening that I can't change. It makes me feel overwhelmed. I have trouble getting up the motivation to do things. I would like to just hop off the planet and have a breather for a while. When I get home I plan to go fishing for at least a week with my brother." (ID29: 27).

Many of the patients with spinal cord injury experience a real sense of vulnerability and powerlessness. They are dependent on the hospital staff for much of their physical care and yet struggling to regain as much independence and control over their lives as possible. The aim of rehabilitation is to assist the individual to return to former functioning and if that is not possible then to as near to that ideal as possible. With spinal cord injury, there is substantial loss of physical functioning, but it is recognised that the extent to which an individual is able to exercise control over their life and the decisions which affect them, is a major contributor to the adjustment outcome for that individual (Beatty, Richmond, Tepper, & Delong, 1998; Boschen, 1996; Emener, 1991; Felton &

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Revenson, 1984; Frank & Elliott, 1989; Richmond, Metcalf, Daly, & Kish, 1992; Schultz & Decker, 1985; Theuerkauf & Stewart, 1992).

One of the first factors which impacts on the degree to which an individual is able to exercise control, is regulated by the hospital environment and the interactions between the injured individual and hospital staff. Many times these interactions actually serve to mitigate against the very objective which the institution claims to be espousing, assisting the injured individual to achieve maximum independence. This sense of loss of control is difficult to cope with and is the source of some conflict situations as illustrated by the following excepts from the data.

"I cant wait to get home. It will be good to get back. Once Im at home, Ill be able to do my own thing. HERE you are treated like a two-year-old. It's more restrictive than it needs to be. We're not sick in here. We need more freedom. It needs to be more like a natural environment. I need to be able to get out of the hospital more, otherwise it gets to be too depressing." (ID39: 160).

"The ward routines are very restrictive. For example: bedtimes, you must be in bed by 9pm if you can't transfer and dress yourself. That means you can't go out at night. I hate having to ask permission like a child and then being told no. The issue of power is a big issue in this place. Nurses tend to hold things against you. (ID32: 78).

"I'm looking forward to getting out of here so I can sleep-in on Saturdays and Sundays. That's our day off. Just because the nurses are working doesn't mean we have to stick to the same routine. That really gets to some people but they feel defenceless so they don't say anything. You just have to do things at certain times because it is more convenient for the nurses then." (ID9: 30).

Each of the above excerpts from the qualitative data reflects the perceived loss of power, independence and vulnerability experienced by the respondents. The conflict with

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hospital staff as respondents struggle to re-establish control and independence in their lives is also evident in the above quotes. The evidence of this tug of war between the demands on hospital staff to provide adequate care and efficient rehabilitation services and the patient's need to regain independence is much like the conflict between an adolescent and a parent. Conflict between the needs of the organisation and the needs of the individual requires sensitivity and skill to successfully navigate the course of rehabilitation. Staff need to be trained and carefully supervised to ensure that independence is facilitated in ways that are meaningful to the individual. Independence may mean different things to different people.

LOSS OF DIGNITY Another factor which contributes to the disruption of the equilibrium in the injured individual's life, is the loss of dignity or depersonalisation that is experienced as a result of the hospitalisation experience. Loss of dignity may be a direct consequence of loss of function due to the injury, such as loss of control over bodily functions such as the bowel, or a result of the hospital environment, such as being accommodated in four-bed cubicles separated by only a curtain for privacy. There are few areas within the Spinal Unit environment where couples or family units can have private time away from the watchful eyes of the staff and other patients.

The loss of dignity and depersonalisation are reflected in the following quotes:

"I felt like in hospital I was treated like a child. Treated like JUST a person in a chair. Treated like just a patient. Before I came here I was real person. I had a past. I had a job. I had respect. I could make choices." (ID29: 28).

Other respondents experienced similar responses. "I wish the nurses could have known me prior to the injury. Now my pride is all gone. The nurses don't care what I look like. I need to feel good about myself. I'm 25 years old and I am being treated like a 10-year-old." (ID33: 91).

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Initially I felt really bad about my appearance. For example, I had a bedsore on the back of my head after I came out of Intensive Care and all my hair fell out. I had always thought I was pretty good looking. It was a terrible time. I got very depressed - Going bald on top of every thing else that was going wrong. It just seemed too much to cope with. On top of that my clothes didn't fit properly." (ID1: 1).

Lack of privacy in the hospital environment further contributes to the loss of dignity and depersonalising experience of being a severely injured hospital patient as described by the respondents:

"I am looking forward to being able to get out with my wife. L (wife) and I can go to the movies. It will be good to make our own plans without having to ask someone else's permission and all the planning we have to go through to get out of here. We need some privacy to work things out for ourselves. It should be better when we get home." (ID35: 112).

There is no privacy during the ward rounds. It would be good, if they could give you more privacy. It's like going to see the doctor in front of everyone else. If there had been more privacy it would have made it easier to talk to the doctors. There was also the issue about confidentiality I just didnt feel free to ask questions. (ID22: 162).

LOSS OF SOCIAL AND FAMILIAL ROLES The loss of social and family roles and responsibilities further exacerbates the disruption to life adjustment. The respondents felt devalued because they were no longer able to perform or participate fully in roles they had fulfilled and enjoyed in the past.

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"It's hard not being able to all the things I used to do. I used to play so much sport and be surfing all the time. I still go out with the mates but now I feel like I am on the sidelines. (ID38: 129).

"My mother is 92 and she still lives alone. I used to call in on her three days per week. I cant look after her any more. I used to do all her running around. Its left her in the lurch. She cant accept what has happened to me. She still wants me to do things for her. (ID7: 62).

"I still think about walking at times, but I don't think I ever will. I more think about what things used to be like, more than thinking about walking again. I don't think about it every day like I used to. It's more like when friends just come back from a snow skiing holiday and I think about how much I used to like skiing. It is more a sense of loss or regret because of what I can't do, than sitting around thinking one day I might walk again. In the early days I used to dream that I could walk but not any more. (ID47: 180).

DEPRESSION Some respondents experienced periods of depression, which was a reaction to disruption to and losses in their lives. Some respondents talked about the depression they experienced especially in the initial stage following their injury as evidenced by the examples below:

"When I first came home I was depressed. I used to cry at the drop of a hat. But I'm not like that now although I think I am still adjusting to this new life. (ID4: 46).

"Lately Ive been getting really down. Just sitting on the veranda, watching the world go by, watching things happen. For example the show was just on, and I saw everyone going past with their cattle. I felt so left out. Little things like that 137

upset me more than they used to. Some days I just cry my eyes out. I just get so frustrated. (ID7: 71).

"I was all right for the first couple of months but after a while my mates didn't come around as much and I got bored. I got really down. It all really hit home. I got over the novelty of being at home again. I thought it's bad now. I thought about the future and I got really down. (ID33: 95).

Some of the depression experienced by the respondents is related to events that were happening in the respondent's life, while for others depression is associated with grief related to the loss of valued roles and friendships.

SUICIDE Thoughts of suicide are common following spinal cord injury and indicative of the degree of disruption experienced by the respondents and their capacity to cope with the disruption. As discussed in Chapter Two the suicide rate following spinal cord injury is higher than found in the general population in the first few years following injury. Even though the rate is higher than the general population, relatively few people with spinal cord injuries actually commit suicide. For example one respondent (ID31) alludes to thoughts of suicide but feels unable to carry them out because of family responsibilities.

"I might get on the grog when I get home. I don't know what is going to happen. Sometimes I feel like I can't put up with it much longer. I think about is life worth going on with. I just want to get home now. I have to think about how to help Mum now that Dad is dying with cancer. (ID31: 67).

Likewise the respondent below (ID1) also has family responsibilities which prevent him from carrying out his suicidal thoughts although he was severely depressed and was receiving psychiatric intervention.

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"I was really depressed to start with. There's no way around it. Life's a shit! I can't accept being in a chair. I don't like being like this but I don't have any choice. I'm forced to get on with life. I can't commit suicide because of the kids. Mind you I've thought about it enough but you just have to go on. (ID1: 10).

Other respondents also reported thoughts of suicide.

"The depression really wears me out. I think about suicide occasionally but I don't have any intention of doing it. (ID29: 42).

Two respondents actually committed suicide during the course of the study. Both were individuals with incomplete injuries and faced multiple psychosocial problems.

The first respondent who committed suicide was an individual who was injured when he was assaulted outside his home as result of a dispute. His injury was incomplete. He was able to walk functionally but had very little use of his upper limbs and hands. He was unable to fully dress or shower himself without assistance. As a result of his injury he was unable to maintain his business and therefore lost his source of income. He felt an acute sense of injustice and anger because the police did not charge anyone for the assault. He had also been extensively involved in competitive sport prior to his injury. He was no longer able to pursue this recreational interest, which represented another substantial loss to him. The social history recorded on his medical record suggested that he might have had few opportunities to develop effective coping skills. His family of origin, in New Zealand, was reported to have been characterised by conflict. His parents had separated when he was pre-adolescent. He had left school and his parents home at an early age. He had few friends or social supports and no family in Australia. He lived in a boarding situation and his landlord was his friend and main social support. He had a history of alcohol abuse and it was reported that he tended to use aggression to solve his problems.

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At the time of his discharge interview he presented as extremely depressed and made the following statement which reflects his losses, grief, anger, depression and frustration.

I know I should feel lucky to have gotten as much recovery as I have gotten, but instead I just feel depressed and angry. Ive lost my business and I dont think I will ever be able to do that kind of work again. The doctors say I cant ride the bulls (in the rodeo) again because I might hurt my neck again. My hands are too weak to hold on anyway. The police dont believe me. There is no justice for people like me. They (the police) dont care. The bastards who did this will get what is coming to them. Ill see to that. (ID5: 55).

He went on to say:

I dont think life is worth living like this. Ill give it six months. If Im not better by then I dont want to go on. (ID5: 55).

Because of the incomplete nature of his injury he was hopeful of more recovery on one hand but on the other hand he was saying he didnt want to go on living if his life could not be like it was prior to his injury.

At his six-week follow-up medical appointment he presented as severely depressed and was referred to a psychiatrist for follow-up. He refused to attend the appointment and refused all other offers of counselling and assistance. He committed suicide at home a few weeks later by hanging himself after taking an overdose of tablets. He died less than six months post injury.

The other respondent also had an incomplete injury. He was wheelchair dependent but had some movement in his lower limbs and was also hopeful of continued recovery to allow him to walk again. This did not occur. He had complex psychosocial problems that impacted on his adjustment outcomes, including aggression and hostility within his

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family, serious financial problems, housing concerns, chronic unresolved pain and other recurring medical problems. He had few friends and no employment.

At the time of his discharge from hospital his attitude was positive and characterised by hope for the future as evidenced by the following extracts from his discharge interview:

Ive been wanting to get out of (my job) for some time. This will give me the chance to make the change. (ID44: 185).

I believe I will walk again. The doctors dont always know every thing. (ID44: 185).

When asked what advice he would offer to someone else in his situation he offered the following:

Try and stay positive. Know that things will get better. (ID44: 185).

By twelve months post discharge from hospital there was evidence that the challenges he faced were taking their toll on his ability to cope but there continued to be some evidence of hope for a better outcome.

At about three to six months after I got out of hospital our family stress levels really hit crisis point. Delays in the building modifications resulted in increased stress for all of us. It takes time to adjust. Time is a great healer. (ID44: 186).

I feel like Im having more difficulty adjusting to my disability now than when I first got out of hospital. Im a person who likes to give but I dont ever seem to receive. I think I cope by keeping to myself more now. Ive become more wary as Ive grown up. (ID44: 188).

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When I first got out of hospital I went out a lot and visited a lot, especially as things were so difficult at home. But now most of my friends seem to have drifted away. I still have some friends but a lot just dont keep in touch. (ID44: 188).

At this interview his home modifications had just been completed but had resulted in financial hardship for his family as well as for himself. He had returned to live at his fathers home after having lived independently for some years prior to his injury. There had been conflict between him and his father prior to his injury. He had invested all of his savings in the modifications to his fathers house so that it would be accessible for him. However the living arrangements were not working out so well as evidenced by his comments about family stress and in fact broke down completely a few months later. This resulted in him having to move out and stay with friends in accommodation that was not accessible. He became very angry with his father and what he perceived as the unfairness of life.

The 24 month interview with this respondent was conducted in a public ward of the hospital where he had been admitted for treatment of a pressure sore and pain management review. The admitting doctor noted that he was in a very unkempt state. The treating doctor suggested that he may have deliberately caused the pressure sore and that it had deteriorated due to neglect of care routines. His financial and housing problems were at crisis point. He was receiving specialist psychiatric care for depression. The interview was difficult because of the lack of privacy in the ward situation and also because of his depression. He expressed a sense of defeat and hopelessness.

I feel like Ive been cheated. I had to move out but now I have nothing because I invested everything I had in the modifications to Dads house. Ive even taken a restraining order out against him. Now I have nowhere to live. I had to give up my studies because of all the stress in my living situation and I couldnt continue my (direct selling business). (ID44: 191-192).

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This respondent had become socially isolated, was experiencing homelessness, family breakdown, disappointment and extreme financial hardship. He felt that he had lost everything that was important to him.

His medical problems further contributed to the problems he faced. He had chronic problems with pain management and expressed anger at the medical system because his pain could not be managed better. He suffered from recurrent urinary tract infections which medical staff believed to be due to non-compliance with bladder management techniques The depression and overwhelming social problems may have been a contributing factor in the non-compliance.

As a result of the pain and depression he resorted to the misuse of prescription drugs and was being investigated for drug abuse at the time of his suicide. The drug use was in direct conflict to his healthy living philosophy of life and was difficult to integrate with his professed value system. He committed suicide just a few weeks following his admission to hospital for treatment of the pressure sore, by driving his car into the hospital car park very late at night and connecting a hose to the exhaust pipe. He was found dead in his car the next morning by staff from the Spinal Injuries Unit. It was as if he had made one last statement aimed at the hospital and health care system, which he felt had failed him. He committed suicide approximately 30 months post discharge from his initial rehabilitation program.

Both individuals who committed suicide displayed depressive symptoms, had significant social problems and few social supports. Both felt that "the system" had failed them, because of unresolved pain in the first case and in the second, because of unfair treatment by the justice system. The depression and risk of suicide had been identified in both cases and appropriate action to refer for psychiatric treatment had been taken. In both cases it would seem that the individuals had little hope, perceived insurmountable psychosocial problems and insufficient coping resources to face the challenges related to their injury and social situations.

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These two cases provide some insights to the interactions of the complex social and environmental factors, which can contribute to negating the coping efforts of the individual. This is evident particularly in the second case where the respondent (ID44) presented a positive outlook about his ability to cope and had a hope for the future both of continued recovery and a quality of life when discharged from hospital but committed suicide 30 months later. Better systems are needed to support and assist individuals to address the social, medical and environmental problems confronted. In both cases the risk of suicide had been identified and appropriate referral for treatment for depression recommended. However the psychosocial problems remained unaddressed in the community setting.

Both instances of suicide identified in this study occurred with respondents who had incomplete injuries. As discussed in Chapter Two people with incomplete injuries may have some additional emotional and psychosocial problems related to the incomplete nature of their injuries. While excellent care and support may be in place for those who are more severely injured we need to further investigate the needs of those with incomplete injuries or resolving and uncertain prognosis, and develop programs that better address the needs of those who may not require such extensive inpatient hospital care. Services such as ongoing outpatient therapy, counselling, vocational support and advocacy need to be considered. Services, which support or facilitate the development of hope pathways, through resource allocation and address psychosocial problems are essential in the prevention of suicide following spinal cord injury.

SUMMARY The data presented in this chapter provides a rich account of the nature and degree of the disruption experienced by the respondents in their lives. Sustaining a spinal cord injury resulted in physical trauma, loss of physical function, loss of dignity, the sense of being in control, and emotional disequilibrium, as well as the loss of valued family and social roles. As a result of the disruption experienced in the lives of the respondents they responded in a variety of strategies to restore balance within the life systems, in which

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they lived and functioned. The strategies utilised by the respondents are presented and discussed in Chapter Seven.

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CHAPTER SEVEN STRATEGIES TO MANAGE DISRUPTION TO LIFE

A number of well-articulated cognitive and behavioural coping strategies emerged from the data and were employed by the participants to re-establish some balance in their lives. The strategies used by the respondents are identified from the data and discussed in this Chapter. Both cognitive and behavioural strategies were utilised by the respondents, often with multiple strategies being utilised concurrently. Some participants provided coherent summaries of the strategies they adopted. For example one respondent replied to the question about the advice that he would offer to someone else in a similar situation with the following advice. He even listed each point off by labelling it alphabetically:

"A - Be positive B - Set yourself goals C - Consider other people D - This is not the end of the world. (ID20: 153).

While not being aware of the theory behind the advice he offers, this respondent is clearly aware of some of the strategies that he used to help himself cope. These included adopting a positive or optimistic attitude or outlook on life (possibly a pre-existing personality trait), maintaining motivation by setting goals, and some cognitive restructuring techniques, such as seeing someone else's need or disadvantage as greater than your own.

Still another informant summarised his response to the same question as follows: "Don't sit back and dwell on it. Do as much as you can for yourself. Find new interests or you will get bored. Have an open mind to doing new things such as reading or chess.

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Get out and don't worry about what other people think of you. Accept yourself. I'm in a wheelchair now and that's just the way it is going to be. (ID37: 132).

These two discrete summaries capture the essence of some of the emerging coping strategies identified in the data. These were largely cognitive/behavioural strategies that were consciously or unconsciously employed by respondents to facilitate adjustment to the disruption to their lives. The extent to which they are able to succeed is determined by a complex interaction between the way in which they think (i.e. cognition) and act (i.e. behaviour) in relation to their injury and its consequences as well as other influences from the social, medical and environmental spheres of their life. The discussion of these interacting factors will follow later in this Chapter.

Essentially ten coping strategies were identified from the data set. They included; hope, determination, keeping busy, finding meaning in the experience, making downward comparisons, exercising control, reframing, acceptance, finding a purpose in life, making the world a better place, family and religion. A discussion of the identified strategies follows.

STRATEGIES USED BY THE RESPONDENTS Hope Thirty-two of the 44 people (73%) who participated in this study stated that maintaining hope was essential as a factor that helped them cope in the early stages following their injury and for some hope continued to be important in helping them cope with the longterm consequences of their injuries. Three main foci of their hope emerged from the data set: 1. 2. 3. Hope for a full and complete recovery (unrealistic) Hope for a cure for spinal cord injury Hope for a future life that was satisfying

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Hope initially provides the motivation to survive and get on with life. Hope is a strong motivator. The respondents who had incomplete spinal cord injuries had more reason to cling to hope for continued physical recovery. For some there was an element of realism about their hope because the medical officers often advise people with incomplete injuries that recovery can continue for up to two years post injury. They are usually cautioned that it is rare to get full or complete recovery and that the longer that one goes without recovery the less likely it is that recovery will occur. Popular books that document someone's recovery following spinal cord injury with emphasis on the need to work hard and maintain a positive attitude fuel these hopes (Shepherd, 1996). Such books often imply that if you do these two things you are guaranteed recovery.

The down side is that if recovery does not occur it may be implied that you have not worked hard enough or been strong enough in maintaining a positive attitude. For those individuals who have an incomplete injury, as time passes and the chances of recovery diminish, a sense of reality sets in that can result in despondency and loss of motivation. The extent to which individuals are affected by this process and their adjustment or equilibrium is disturbed, is once again influenced by the interaction of the complexity of inter-personal, intra-personal and environmental factors.

Hope for recovery is strongest in the early stages post injury but is sometimes maintained even when the respondents admit that they know it is a very remote possibility.

"Don' ever give up. I still think one day I'll walk again - maybe not the same as before but I still think it will happen. Sometimes I give up but most of the time I think it will happen." (ID1: 7) This statement was made by a respondent with a complete injury at six months post discharge from hospital.

Im getting some sensation back in my upper leg. I think Ill keep getting more back. Its not normal feeling, like direct feeling, but I can tell there are changes. There is more feeling there but no movement in the muscles. You have to keep hoping and waiting. (ID2: 30).

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The above respondent had some preserved sensation (feeling) but no motor function (movement) below the level of his injury. This statement was made three years postdischarge, when from a medical perspective the chance of any recovery would have been most unlikely.

"Never say anything negative. HOPE keeps you going in this place. You need to be able to think that you are going to get better. (ID9: 79).

The hope continues to be maintained, despite the progression of the realisation that the hope might not be fully realised. This is evidenced by the following quotations from one individual's interview transcripts over the three-year period.

"The recovery kept giving me hope. (ID22: 163: six month interview).

"I really appreciated the small things as I began to do things for myself. Being able to turn pages. Being able to get my own cigarettes out of the packet Seeing things coming back kept me going. (ID22: 163: six month interview).

"I still haven't come to terms with what has happened to me yet - I'm still counting down for my two years - I know I have to accept it. (ID22: 166:12 month interview).

"I'm still hoping for a full recovery. - I have to keep hoping and keep trying. I have to keep exercising. (ID22: 169: 24 month interview).

Even those respondents who had complete injuries and were aware that there was really no hope of recovery were able to maintain hope.

"I think about walking sometimes but I don't really think I ever will again. But I still believe in miracles. (ID31: 68).

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All of the above examples of using hope as a strategy to cope might be interpreted as denial. As discussed in Chapter Three denial may have a place to play in coping with spinal cord injury. Lazarus and Folkman (1991) suggest that denial can be an adequate coping process which is used to minimise, ignore or tolerate a situation that is not remediable. Where an individual has little opportunity or ability to change an extreme situation then denial may be an effective coping mechanism. Denial is one of the avoidant strategies and may be more useful in the early stages of adjustment but could be replaced with more adaptive coping strategies as mastery of daily living skills is achieved.

The hope for a cure was also strong in some respondents' minds. The implications of a future cure meant that they needed to exercise to maintain the range of movement in their joints to benefit from the cure if or when it is discovered.

"I have high hopes of a cure. I've been listening to the radio and reports about the work being done in Japan. There is always a doubt but there is always hope to get more movement back. I have plans for the future. I know I'll never be the same as before therefore I need to keep my mind active so I can do well in the futureI want to make as much money as I can so that if a cure does come along I can afford to go overseas for the treatment. I'm still pretty hopeful. (ID33: 96).

"I live in hope of a cure. Otherwise I would get out of life all-together. (ID35: 119).

"I hope that in the future they will develop an operation that will give me a cure. I believe it will happen but I don't let my life revolve around it. (ID37:1 32).

Even for those individuals who were more realistic, there was evidence that hope was still an important factor. In their case it was more a hope of future life that could be satisfying to them.

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"The best thing was getting out of the Edgerton bed (a special bed used to nurse spinal patients who are immobilised), and then into a chair (wheelchair) and then to physiotherapy. Once I started getting to the gym I knew there was hope. When I was still in bed I didn't want to listen to the other's positive suggestions about what I could achieve. (ID41: 193).

"A lot of people (referring to other people with spinal cord injuries) need to see that there is a pot of gold at the end of the rainbow. Not just money but good things in life. (ID22: 173).

The role of hope in the coping process is not well understood or researched. Contemporary coping literature acknowledges the importance of hope both in the recovery and coping process. The respondents in this study clearly identified the importance of hope in the overall adjustment process. Interventions, which support and facilitate hope, with an appropriate focus need to be developed and studied to better understand this process. The ability to maintain hope in the face of significant disruption to life, such as the experience following spinal cord injury, may be further supported by interventions, which address other psychosocial problems in the social and environmental spheres of live. There is some evidence from this study that the role and focus of hope in the adjustment process following spinal cord injury may change over time.

Determination Determination is the second strategy identified and clearly articulated by almost half of the respondents. It is closely linked to the idea that one must maintain hope at all costs. Respondents often expressed the concept labelled determination in the data set, in terms such as "Keep going" and "Don't ever give up". There was a sense among the respondents that it was most important to keep on trying or you are beaten. This was stated in various forms but many respondents seemed to display a determination, drive, or "stubborn streak" that kept them going despite the difficulties encountered. Determination as described by the respondents reflected cognitive coping strategies in the form of

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concentrating on the positive aspects of life, taking one day at a time, taking control (making it happen), or adopting a "can-do" attitude to life. Statements reflecting the use of this cognitive strategy were identified in the data set for 21 (48%) of the respondents.

ID22 said, "Don't ever give up trying (ID22: 169) in her first interview. Six months later she made a very similar comment, "I can't give up. My determination is my main driving force. Just go with the flow (ID22: 171) and again two years post injury the same respondent offered this advice "Never give up. At least have a go. What have you got to lose? When you stop trying you should be ready for the wooden box (ID22: 173).

Many other respondents echoed this strong sense of determination.

"You have to keep fighting it. (ID11: 92).

"Keep trying. Don't ever give up or you are beaten. If you believe you can do it then you will find a way. (ID14: 124).

"Hope for the best. Prepare for the worst and just keep trying. Never give up! (ID24: 179-80).

Even the most severely disabled displayed this sense of determination.

"The pain and suffering is inevitable but the misery is optional. You can go on feeling sorry for yourself for the rest of your life or you can get on with living. (ID35: 112).

The above statement was made by one of the most disabled people with whom I have ever worked. He was fully ventilator dependent and had no movement below his head. Despite the severity of his disability this respondent still displays a determination to "get on with living".

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This sense of determination was a common theme that was readily identified by the participants themselves. It was as if they feared that if they stopped trying they would go backwards. It was almost like something to cling onto, like a piece of driftwood in a storm. It was as if they could never risk giving in, for fear of the consequences. It was as if there was a momentum generated by this determination to keep fighting despite the odds that somehow seemed to keep them going. This implies that those who are made of the "right stuff" or have a strong "internal fortitude" will be the ones who make the most successful adjustment. There are however a number of factors that will be discussed later in this chapter, which could impact on the individual's ability to "keep going" even if they are very determined or strong willed. The concept of "being made of the right stuff" alone is not enough to facilitate a successful adjustment process.

Keep Busy The "keep busy" behavioural approach was another clearly articulated strategy developed in the data by the respondents themselves. Thirteen respondents (30%) articulated the need to keep busy as an important factor in their coping process. This need to keep busy is a distraction technique but it can also assist by enhancing self-esteem as a sense of achievement is realised and goals are achieved. Keeping busy may also contribute to finding a purpose to go on living as discussed in more detail below.

The need to keep busy was a recurring theme running through the interviews with the young man below.

"Keep busy. Keep your mind occupied, if you don't you get depressed. (ID02: 23: six month interview).

Try to keep busy so you dont have to think so much. (ID02: 25: 12 month interview).

"I try to keep busy so that things dont get me down. I am involved with the pistol club, the football club, the darts club, the RSL (Returned Serviceman's League), 153

and SEAT (Spinal Education and Awareness Team). (ID02: 24-month interview).

These quotes reflect the determination to make things happen as described above. The need to be busy, even too busy is clearly stated be important to him and remain important in the coping process across time.

"I find it is important to keep busy - orchids - property maintenance etc. I've adopted the attitude that time doesn't matter. If I want to do something it doesn't matter how long it takes me. I can still enjoy doing it. (ID14: 119).

"Keep busy - Too busy! Get back to what you were doing before and get good at it. Now that I am going to (town named) every weekend, rally car driving, I'm doing things that I couldn't do before the accident. Don't sit back and wait for things to happen. Make it happen!" (ID24: 185).

Keeping busy is a way to keep one's mind occupied. Some respondents indicated that they believed this to be important because if they were not occupied they tended to sit back and dwell on negative aspects of life. It was as if they made a deliberate choice to keep themselves busy so that they did not have time to think too much. To some extent this could be interpreted as an avoidant strategy or even in extreme situations denial. However in the respondent group the "keep busy" strategy seemed to be effective in assisting them to cope with the extreme emotions experienced as well as finding activities that helped them to achieve goals and re-establish social and community roles.

Reconstruction of Meaning As discussed in Chapter Three making meaning out of a traumatic event is a deeply personal and highly diverse process. For some, meaning is discovered by adopting a belief that the accident has made them a better person for the experience. Others will modify their experience into some social action or "survivor mission" as part of their adjustment process (Harvey, 1996; Janoff-Bulman, 1992). Harvey (1996) suggests that 154

whatever the process adopted by the individual, the reconstruction of meaning is both life-affirming and self-affirming. Janoff-Bulman (1985; 1992) suggests that making sense out of what has happened involves a search for meaning and or an attempt to find a purpose in what has happened. This process of reconstructing meaning is a process of finding new interpretations or redefinitions, which contribute to the process of making sense out of what has happened. It is a process that occurs over the course of the coping and adjustment process (Janoff-Bulman, 1992). The respondents used a number of approaches in the course of reconstructing meaning. These included; constructing benefit from the experience, making downward comparisons to someone less fortunate, engaging in social action and seeking spiritual answers to the "why" or "why me" questions. These are presented below.

Constructing Benefit from the Experience One of the common coping strategies used by the respondents was constructing benefit from the experience of sustaining a spinal cord injury. The strategy of constructing positive benefit from the experience of sustaining a spinal cord injury intuitively seems far-fetched. However nearly a third (32%, n = 13) of the respondents identified benefits that had resulted from their injury. Perceived benefits included becoming a better person because of the accident, becoming a better parent or marriage partner, or becoming more sensitive to the needs of others as reflected in the quotes from the data set below:

"I can't see this as a tragedy. ... I've come out of this experience bigger and better for it. I'm a lot more confident now. It's been a personal growth experience. (ID15: 127).

"Before the accident I used to do a lot of drugs. It was like the accident was a message to slow down and get my life together. I used to drink a lot but now I just talk myself down again. (ID18: 148).

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"Every thing is going good for me now. My relationship with my girlfriend might even be better now than it was before my accident. Before my accident I was always pretty self-centred. Something like this makes you stop and look at yourself. Before the accident I got drunk every weekend. I wasn't going anywhere. I was just stuck in a rut. Being in hospital like this gives you time to think." (ID30: 52).

As discussed in Chapter Three construction of a positive benefit is a cognitivebehavioural strategy that is commonly employed following traumatic experiences. This strategy is not employed universally and interventions, which support this strategy, need to be used with sensitivity to the worldview and perspective held by the individual.

Making Downward Comparisons Making downward comparisons involves comparing one's self to someone seen as less fortunate. By making downward comparisons the individual is able to feel more positive about their relative position (Wills, 1987a). Even some of the most severely injured and disabled respondents displayed evidence of using this coping strategy. This is exemplified in the quotes below from a man who sustained a high quadriplegia level spinal cord injury. Some years before he had lost a leg as a result of a war related accident. He therefore had multiple disabilities and was very dependent on members of his family for assistance with personal care tasks. Despite his own severe disability he made comparisons to other people who were worse off than me" to help lift himself out of "sad" moods.

"Life was already a struggle for me. Sometimes I feel sad and disappointed, but then I remember the thousands of people who are worse off than me. (ID36: 123).

Another example of using downward comparison even in the face of a severe disability is reflected in this quote by a respondent who believes they are "lucky compared to others".

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This respondent has incomplete quadriplegia and could walk to limited extent, however was very disabled and remained very dependent on others because of the limited use of her hands and upper limbs.

"I think I am lucky compared with the others. I'm just me. I get up and do my routine. At least I can walk. I would hate to be like those in a chair. (ID22: 171).

Like the efforts to find positive benefit from the experience of sustaining a spinal cord injury, making downward comparisons to others who were less fortunate was a common strategy employed by the respondents. Similarly it was not found to be a universal response. Interventions need to be tailored to the preferred way of coping utilised by the individual and supported but not imposed.

Why Me? Many respondents talked about the need to find an answer to the questions about why the accident had happened and why it had happened to them. Searching for answers to the "Why me" questions is another way of attributing meaning to sustaining a spinal cord injury. Finding meaning to these questions also helps respondents to re-establish order in their view of the world as a meaningful place. Janoff-Bulman (1985) suggests that one of the basic life assumptions is that the world is an orderly and just place and that people get what they deserve in life. When one sustains a spinal cord injury such assumptions are called into question. Finding answers helps to re-establish a worldview that gives meaning to what has happened. The shattering of the assumption that the world is an orderly and just place or that people get what they deserve in life is particularly strong in the data from the respondents presented below.

A strong sense of injustice is evidenced in the quote below. The statement reflects the sense that the respondent has earned the "easy life" because he has always worked hard.

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"I keep asking ask myself the same question "Why did this happen to me? We would have been on easy street. We would have been happy, wealthy with a nice smooth life ahead of us. We had our house paid for. The business was going well. Now this happens! There aren't really any answers to those questions. (ID1: 3).

A similar sense of injustice is conveyed by another respondent who initially felt that God had let her down.

"When I was first injured I kept asking "Why me". There were no answers to that question. I've lived a good life. I've always been involved in the church. I felt that God had let me down. I don't feel like that now. I've made my peace with God to the stage where I could accept it. (ID4: 39).

The inability to find satisfactory answers to the "Why me" questions may be a contributing factor to adjustment difficulties for some people. For example the respondent quoted below reported being depressed and socially isolated. The search for meaning was a recurrent theme in each of his five interviews.

"I'm always trying to make sense out of what has happened to me. I believe that it was meant to happen and that there is some reason for everything. (ID41: 204).

Similarly the respondent below who also experienced difficulty understanding why this had happened to him was also experiencing adjustment difficulties and depression.

"I know this can happen to anyone. Unfortunately it happened to me. I sometimes ask why me but I know its not just me. It could have been anyone. It could have been cancer or some other disaster. It could have happened to anyone. I cant figure out why it happened to me but I know it could have been anyone. (ID25: 13).

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For a number of respondents the "why me" answers were found in spiritual beliefs.

"I believe there is a plan and a purpose to everything that happens. God has a purpose for me being in a wheelchair. (ID7: 54).

"I'm a Catholic. I believe in life after death. I've had to pay twice in this life for the bad things I've done in my life. (ID36: 125).

Searching for answers to the why me questions helps the individual once again reestablish meaning in the world and be able to move on in the process of adjustment. The search for an answer is a very individual process and for some is never resolved. Individuals who satisfactorily resolve the why me questions are often better positioned to cope with other aspects of the adjustment process. There is some evidence that those who experienced difficulty resolving these issues may have had more difficulty in the adjustment process. This requires further investigation.

Acceptance Acceptance was a cognitive strategy adopted by many respondents. For some they felt that they "had just accepted" what had happened to them immediately. For others acceptance happened as a gradual process that took place over time. It included acceptance of a changed persona, and acceptance of physical limitations.

"I just accepted what had happened. I couldn't change it so I had to get on with it. Attitude has a lot do with it. Every problem I've had to face since I was 14 years old I have faced alone. (ID29: 41).

"Just accept each day as a new day and don't make plans that are beyond your reach. Accept what you can achieve as just the next step and working towards your goal but don't set your sights beyond your reach. (ID14: 122).

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"I'm doing up a house in the next street that belongs to my family. I am painting and doing minor handyman type repairs. It takes me a very long time to achieve what in the past would have been a relatively simple task but I get a real sense of achievement every time I manage to finish a task. I don't let it worry me how long it takes. I just accept it. (ID14: 124).

Much of the early literature discusses the importance of acceptance in the adjustment process and it was often seen as the final stage in adjustment. Based on the data generated from the study it would seem that some respondents very quickly, almost immediately for some, arrived at a position of acceptance and understanding of what had happened to them and many of the implications for their lives. Acceptance seemed to facilitate adjustment for some respondents but was not universally employed or essential for successful adjustment.

Religious Beliefs Five respondents had a strong Christian faith and this faith in an all-knowing God, who had a personal interest in their lives, played an important role in their ability to come to terms with their injury and subsequent disability. Despite the fact that in our western society we tend to emphasise personal control and autonomy, these respondents were able to make sense out of what has happened to them by believing in a good and loving God who is responsible for making the ultimate judgement about ones outcomes in life. Church groups also provided social and financial support in times of crisis. The belief systems and social supports of the respondents who belonged to religious organisations contributed to their coping resources.

"A lot of people said prayers for me. My faith in God helped me accept what had happened. (ID04: 39).

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"Faith in God has been the most important thing in coping with this. That and Christian fellowship. The church has been very good, very supportive. They have provided gifts to help with bills etc. (ID06: 59).

"I kept praying all the time. I believe God gave me the recovery I got. I didn't used to believe in miracles but I do now. (ID15: 126).

ENGAGING IN SOCIAL ACTION Engaging in social action can impact on the way the injured individual thinks about themselves and their accident. It may help to give meaning to what has happened to them. In addition positive social action can enhance one's self-esteem and sense of control over life. Respondents found meaning in what had happened to them by discovering opportunities to assist others or to make the world a better place for people who may be perceived as less fortunate. This coping strategy was utilised by only a small percentage of respondents but was quite effective for those who adopted this approach. It should be noted that while the social action of these individuals assisted with their adjustment process it was not a conscious strategy on their part. Respondents in the study engaged in activities to help others and to make the world a better place, especially for people with disabilities.

Helping Others One elderly woman with quadriplegia spoke very optimistically about her plans for her life when she was discharged from hospital and returned home. Despite the fact that she was totally dependent on others for all of her personal care needs, she discussed her plans to visit a neighbour who had lost a daughter recently. She had heard that the neighbour was quite depressed and she said, "I think I will visit her when I get home. I might be able to help her feel better and cheer her up. It will give me something to do. (ID04: 41). This was a very moving statement from a woman that one would have assumed had enough grief of her own to cope with and yet she was concerned about her friend's loss.

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Another respondent was thinking about how his experience could better equip him to help others. "Maybe now Ill be better able to help the people at the Drug and Alcohol Centre. (ID06: 54).

The respondent quoted below, found meaning to life again by sponsoring a needy child. He showed me the photo of the orphan he sponsored with a great deal of pride. It was as if he were showing me a photo of his own child. This action seems to have helped him to find meaning in life a gain and a purpose to go on living.

"At first I felt life was meaningless. I sponsored a child in PNG through World Vision. That gave me something to live for. (ID36: 126).

Make the World a Better Place The above respondents found meaning in life through actions directed towards other less fortunate individuals. Other respondents seemed to adopt a "survivor mission" to make the world a better place. It was as if the accident and what had happened them had caused them to re-evaluate and reprioritise their purpose in life. As evidenced by this respondent's statement:

"Down in SIU I saw people who were worse off than me. I had never seen any one worse off before. Now I am determined to make things better for them. (ID20: 153).

This same respondent had become very involved in disability housing and access issues "to make things better" for other people with disabilities. The sense of mission "to make the world a better place" is very strongly evidenced in the following statement:

"I've gotten pretty involved with the QDHC (Queensland Disability Housing Coalition). I wanted to be more involved in community issues. We need to change the attitudes of the public towards people with disabilities. People in wheelchairs used to be masked in the community. Now people and legislators attitudes have 162

changed. You can start to see light at the end of the tunnel. I'm working with the (local Shire Council) regarding access issues. Now their building inspectors are insisting that buildings are accessible. It's a slow process but it is happening. I used to get pissed off about things but I never did any thing about it. Now I'm more active. I think it is important to get it right. Things have changed, now that I have a vested interest. (ID20: 156).

Engaging in social action helps the injured individual find meaning to life outside of themselves. Positive and successful experiences of helping others and impacting on the environment for the benefit of others may bolster the sense of control, confidence and self-esteem.

REGAINING A SENSE OF CONTROL OVER LIFE Both cognitive and action strategies were used by the respondents to regain a sense of control over life. Strategies included information seeking, setting goals and maintaining positive attitudes.

Information Seeking Information seeking has been described as the most universal of all coping strategies and positively associated with successful adjustment (Cohen & Lazarus, 1979). Information seeking facilitates the regaining of control by confronting the consequences of the injury, gaining understanding and the knowledge to achieve mastery in the management of the condition. Information seeking was evident at all stages of the rehabilitation process. It commenced with learning about the implications of spinal cord injury. Understanding was affected by the mental state of the respondent. Some respondents reported that no one on the hospital staff had ever explained anything to them. This was claimed despite the fact I had personally witnessed medical staff explaining the spinal cord injury and its implications to both the patient and their families. It would appear that some respondents had no memory of receiving an explanation from the doctor. This is most likely due to the crisis state of the respondent, which prevents information processing. For example one

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young man stated "I can't remember anyone talking to me about what my injury meant (ID3:33), however I was present when the doctor spoke to this young man about his injury and explained the likely outcome. His parents were also present and asked some questions and he appeared to understand what was explained. In the following exerpt the confused state of mind of some respondents is more obvious.

"The first thing I remember is being terrified. I didn't know where I was for about two weeks. At first I don't remember anyone from the hospital telling me anything about my injury. The only ones I remember talking to me about it were my family. My family reckons I was talking normally and seemed OK during that time, but I don't remember it at all. (ID21: 158).

Some respondents chose to actively avoid information in the early stages following their injury. Some adopted an "I don't want to know attitude" while others seemed to crave information from any available source (reliable or otherwise). These coping strategies should not be challenged. For some individuals the "I don't want to know" is a form of denial, and is a part of the shutting down process associated with their crisis/trauma survival strategies. As discussed in Chapter Three, denial can have a protective function in some situations, especially where there is little opportunity to control the situation as experienced when a spinal cord injury is sustained. Denial may afford the client some emotional safety and may be the preferred option of some clients. The research suggests that denial can be effective in the short-term but in the longer term needs to be replaced with a more realistic assessment and problem solving approaches to accomplish effective adjustment.

"Somebody told my parents. I can't remember anyone telling me. I thought that if I had enough determination I'd get better. I didn't want to talk to the doctor. I just didn't want to know. (ID33: 91).

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I can't remember anyone explaining anything to me about my injury or what the chances of recovery were. I don't think I would have wanted to know too early. (ID43: 182).

I didn't want to talk to anyone about my injury. I just wanted to take it as it comes. I didn't want to read the Spinal Handbook either. (ID9: 78).

Because retention of information is problematic in the crisis stage, it is important that information is conveyed when the client is ready to receive and able to comprehend the information. An experienced medical practitioner should provide verbal explanations as soon as practicable, in the presence of someone who is supportive and can clarify information. The injured person and family members should be reassured that it is acceptable to ask questions even if they know they have asked the same question before. If they understand the effect of the abnormally stressful situation on their ability to process information it can empower them to confidently approach medical staff to seek explanations.

Information is one of the keys to regaining control. Not until people understand their situation are they able to confidently make decisions and choices, which affect their future. Information and understanding serve to mediate the effect of vulnerability and helps the injured individual regain control.

After the initial crisis of the injury had passed other respondents became hungry for information. The information seemed to give them a sense of control, understanding and confidence. In the crisis phase, information was particularly important with many respondents talking about the way information was conveyed and the type of information that was important to them. The information sought by respondents related to information about spinal cord injury, the procedures, their prognosis, and the treatment, hospital routines and entitlements. Information is important in the restoration of a sense of control over ones life and in overcoming the sense of vulnerability that accompanies the powerlessness, which accompany the injury.

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I think the doctors talked to me but I didn't take it in - or I didn't want to take it in. Throughout the rehab process I always wanted more information. The Patient/Relative Groups were excellent. I read the Spinal Injuries Handbook. That was good. I especially got a lot out of (the doctor's) talk. (ID1: 1).

As evidenced by the above statement, other respondents sought information and presented an insatiable need to know. They wanted to talk to the medical staff, and asked repeated questions, read books and talked to other patients and peers. They often were unable to discern if information was applicable to their situation or not. Too much information can be overwhelming and yet adequate information is important to restore a sense of control.

Some respondents found it difficult to cope with information because of the overwhelming nature of their experience.

"At times I found it difficult to get answers - the right answers. That was mainly because I didn't know the right questions to ask. (ID20: 151).

A number of respondents reported that they needed additional information about aspects of returning to live in the community, such as equipment supply, relationship issues and quality of life.

"I got all the information I need about the physical aspects of my condition but not the information about the quality of life issues. (ID20: 151).

"Access to information was the most difficult thing. Information about equipment was the best but information about services was lacking. I didn't get to have a discharge conference. (ID49: 154).

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They need to tell you more about it while you are in hospital. You need to know more about the injury. You need more information about what life will be like afterwards. (ID22: 167).

Information may need to be provided in stages, as the individual is able to process information. It may be necessary to explain the injury to the spinal cord and the immediate treatment without saying that the person will never walk again. At a later stage the patient may be told that there is little or no sign of recovery and that if things continue, as they are, that they might not walk again. Very often patients ask questions at this stage about how they will manage, what life will be like, and bodily functions including sexual activities. Information needs to be provided in way that is honest, but yet allow the injured person to maintain some hope. One respondent (ID20) said that the doctor who told him that it didn't look like he would walk again also told him that even if he couldn't walk that he would still be able to do everything for himself, including driving. It was important to him to know that he would be able to be independent. There is no easy answer as to how information about the permanent nature of the paralysis should be conveyed. It needs to be conveyed in way that is sensitive to each individual and yet is clear, understandable, and honest.

When I got to the Spinal Unit, Dr H spent about 20 minutes explaining things to me. He was very positive. One of the most significant things he said to me was that I would be able to do everything for myself, that I could be fully independent. (ID20: 151).

Setting Goals Goals are important in life. They help one achieve and provide the motivation to overcome challenges in life and facilitate the enhancement of self-esteem. The respondents used goal setting both consciously and unconsciously to achieve outcomes. For some respondents goals provided the motivation to "keep going". As time progressed goals became more orientated towards achieving quality of life and longer range life options. 167

Immediately following injury goals may provide the motivation to "keep going," almost a survivor motivation as evidenced by the following examples:

"It is important to set little achievable goals. For example some of my early goals were, to get the tube out of my throat, to get my hair washed, to have my first shower, to sit up for the first time and to get up in a wheelchair for the first time. They were all little firsts but it gave me a sense of achievement to boost me on to my next goal. Setting goals is important from my point of view. Initially small easily attainable goals but later on, look at bigger or longer-range goals. Especially at first I needed to achieve. My motivation is my goals. I have always swum competitively. Goal setting has always been part of my training regime. I just translated that to how I went about coping with being in a wheelchair. (ID43: 184 & 189).

Whenever I get down I just look at my wife and kids. They give me something to live for. They make me think about how important they are and that takes my mind off myself. In the beginning I just tried to keep going for the wife and kids. They basically gave me a reason to keep going. At first I didn't think it was worth it I thought about doing away with myself but I didn't want the kids to grow up like that. I knew I could keep the business going and that would give them a good start. (ID1: 14).

Goals helped the respondents gain a sense of achievement.

Its good to work on my car. Im aiming to get it fixed up. I want to have transport by next year. Working on it and getting it fixed up helped me in other ways. It gave me a sense of achievement as I set little goals for myself. (ID29: 48).

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"I can't say how important I think it is to have something to aim towards. I have always set goals in my life and that is how I achieve the things I want to do. I know what I think is important and what I think is worth working for. My advice would be - set goals. Always set goals for yourself and then work until you achieve them. Break your goals into smaller achievable goals if you have big goals. You feel good about yourself when you achieve your goals. (ID43: 190191).

"I'm really getting into sport now. I'm aiming to be in the wheelchair races at the Olympics in 2000. (ID41: 197).

Goal setting was also important in gaining basic skills for living with a disability. These skills further contributed to the overall quality of life and independence for the individual with spinal cord injury.

"Some days I just make up my mind that I'm going to do something like tying my shoe laces. I thought about it for a while and worked out how I thought I could do it. Then when I had time I tried it. It took most of the morning the first time. I was all hot and frustrated but I did it. Being stubborn helps I think. Now I do it all the time. (ID30: 62).

"I still exercise several times a week. I have to if I am going to use the Walkabout (an assistive walking device used by some people with paraplegia) very effectively. (ID38: 129).

For a number of respondents their goals related particularly to employment. Employment was a goal that was perceived as improving their quality of life by improving their financial resources and enhancing self-esteem.

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"I am starting to work towards a computer-aided draftsman's qualification at TAFE. It will take me a long time because I am so slow but once I'm finished I should be able to earn a good income. (ID33: 97).

"My aims are to finish university and then to get a job. I hope to eventually be a University lecturer. (ID32: 78).

"One of the biggest things that helped me was my last birthday. I was at the pub thinking what was going to become of me. I just made up my mind that I had to do something with my life. I aim to finish High School and go on to University. I want to be solicitor and go to small country town to be a local solicitor. (ID29: 48).

Rehabilitation professionals can work with clients to develop goals and plans to achieve these goals. Goal setting has the potential to become a life skill which can contribute to the long quality of life and overall adjustment outcome. It is a skill which can be acquired and therefore is amenable to therapeutic intervention.

Reframing to Maintain a Positive Attitude Maintaining a positive attitude is somewhat related to the determination described earlier in this Chapter. Maintaining a positive attitude is a cognitive restructuring strategy, which allows the respondents to reframe the challenges and disadvantages they face with a positive attitude. It involves focusing on positive aspects and avoiding negative thoughts as evidenced by the following quotes from the respondents:

"Be positive - see barriers as a challenge." (ID12: 103) "Make the best of everything." (ID12: 105) "Show you are positive. (ID12: 106).

I put my accident in the background and focused on the things I could do. I go where I can go. I don't dwell on the negative things. (ID24: 184).

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"Best way to come to terms with something like this is to treat it like another challenge in life. That's how I felt about it right from the start. (ID02: 21).

The above statements provide evidence of another cognitive restructuring technique commonly employed by individuals who sustain spinal cord injury. Because cognitive restructuring techniques can be learned they provide indications for therapeutic intervention with appropriate individuals. SUMMARY The respondents engaged in a variety of coping strategies both of a cognitive and a behavioural nature. Often multiple strategies were operating in the lives of the respondents at the same time. However the effectiveness of the coping efforts of the respondents was mediated by a variety of factors which impacted on their lives from other spheres in which they operated. These included the availability of social, emotional and practical support, the resources available, access, mobility, transport and health related factors. The impact of these external variables on the coping efforts of the respondents are presented and discussed in the next Chapter.

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CHAPTER EIGHT FACTORS THAT INTERACT WITH OR IMPACT ON THE EFFECTIVENESS OF THE COPING STRATEGIES
The extent to which environmental and health factors impact on the individuals ability to cope using the cognitive behavioural strategies discussed in Chapter Seven can range from positive to negative and anywhere else along the continuum. Response to both positive and negative experiences, vary according to other intervening factors such as family support, peer support and financial resources which mitigate the messages from a negative experience. Therapists who support and encourage independence can mitigate the feeling of powerlessness from a negative experience. A negative experience can cause a person to be more determined to fight resulting in greater determination. On the other hand it can act to confirm a passive/sick role. Isolation and lack of support can result in one giving up or losing motivation.

In this Chapter, factors that have assisted or supported the individual in restoring balance in their lives are examined. These largely fall into place along the continuum of positive and negative factors and demonstrate the impact of the interacting factors in producing either a positive or a negative outcome in terms of the adjustment achieved. The factors identified in the data set included: support from family, from peers with a disability, and from friends as well as financial and vocational resources, access, mobility, transport and health/medical issues.

FAMILY SUPPORT Twenty-seven out of the 49 (55%) respondents indicated that the support from their family had been the most important factor in helping them get through after sustaining a spinal cord injury. Family support was most important in the early stages and during hospitalisation but for many it continued to be seen as very important even up to three

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years post discharge from their initial rehabilitation program. Some respondents were dependent on family members for physical care and assistance with practical tasks such as shopping and domestic duties. For most, the emotional support was of primary importance while in hospital and during the transitional phase back into community living. As more independence and confidence was achieved, so too was more emotional independence. For some respondents there was a tension between receiving support and protecting their loved ones from the full force of the pain they were experiencing.

The quote below is typical of the comments offered by the respondents who perceived their families as supportive and able to meet their needs. The following quotes, collected over the course of the study reflect the recurring theme of family support over time.

"Mum was always there for me. That was the best support I could have possibly have had. Mum's been here at hospital every day for the whole seven months. (ID42: 163:Discharge interview).

"Having a close family was the thing that helped me the most. That was the most important thing. Family and mates are the most important thing when something like this happens. (ID42: 164:Discharge interview).

"Most of the reasons that I am doing so good, is that my family is so close and supportive. (ID42: 167:6 month interview).

"Dad is so helpful. Dad is so proud that I'm winning on the jet ski. Mum is always coming to my races. (ID42: 170:12 month interview).

"We're pretty close as a family. If the family wasn't like that I don't know what I would have done. My family is what got me through. (ID42: 171:24 month interview).

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The family relationship is very close, so the three of us are OK. Everything slowly works out, surviving and living. We just try to be happy while we are doing it. A lot of stuff has happened to us as a family. We just try to be happy. (ID42: 175:36 month interview).

Many respondents clearly perceived the importance of family support in helping them cope and many stated that it was THE single most important factor in helping them cope.

"The most important thing in helping me to get through this has been the support of other people - especially my wife. I think she kept me out of the mental home. I just needed to be able to talk. My wife and I talk more these days than we ever did before. (ID20: 154).

"Having my family behind me the whole time has helped a lot. I always knew they were there for me. (ID33: 98).

"You need to have someone to stand by you. That gives you the security you need to try and helps you to get through it. If you've got someone to help with the emotional side of things it makes it easier to cope with the physical side of it. (ID30: 57).

As was typical of the life stage of many of the respondents, there was a tension between developing greater independence as a young adult and the over-protective family. For example the young man below had recently moved away from home to start a new job when he sustained his injury. When I asked him about his family, at the six-month postdischarge interview, he said:

"Things are OK but Im out a lot. At times I feel like they (his family) want to run my life so I try to stay busy so they cant interfere so much. I would prefer to move out on my own but I cant afford to because it was too expensive. (ID2: 25).

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Twelve months post discharge the same young man expressed this opinion:

"Family and friends need to be really supportive. They need to give you room to do things for yourself or at least to try to. They shouldnt always be there trying to help. They should wait for you to ask for help. You need to do things to get better at doing them. (ID2: 31).

Another young man, who was still living at home at the time of his injury stated:

"My parents were overprotective but that was a gradual process of acceptance by them over time. It made me feel like a child/teenager all over again. Things are starting to get more normal now but it took 6-8 months. My parents were protective to start with and we got into some conflict because of that. Now it is all OK and everyone is comfortable again. (ID24: 181 & 183).

For other respondents there was twinge of guilt at times about creating additional work or emotional strain for family members.

" This has put extra strain on my wife. She had to take on responsibility for lots of extra things, like driving our youngest son to rowing training at 5.30 each morning, mowing, and the orchid house. (ID14: 117).

"I also had good supportive friends. I felt more able to crack up with them than with my family. My family was too close. They tended to get too upset. I had to protect them to some extent. The family had more problems coping than I did. I was worried about Mum. I just didnt have a chance to crack up. (ID32: 77& 88).

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Others were dependent on family members for physical care or practical tasks.

Having my family with me early on did help a lot. They were able to do a lot of things the nurses were too busy to do. Visiting hours need to be more flexible. (ID10: 85).

When I first got home I was very dependent on Mum and Dad, but gradually I got better and took over tasks myself. Then I started going out more. Now they don't have to help me as much any more. (ID24: 183).

Social support and particularly family support is consistently linked with adjustment outcomes in the literature, as discussed in Chapter Two. Schultz and Decker (Decker & Schulz, 1985; Schultz & Decker, 1985) found that people who had high levels of social support also reported high levels of well-being. Likewise in a study of people with amputation of a limb, social support was identified as a factor linked to successful adjustment outcomes (Livneh et al., 1999). The natural social support networks of the injured individual need to be supported throughout the rehabilitation process. Because of the geographical challenges faced due to the location of the Spinal Injuries Unit in the southeast corner of Queensland, alternative sources of support may need to be developed during hospitalisation. This presents a particular challenge in relation to those who come from rural and remote districts.

SUPPORT FROM PEERS WITH A DISABILITY Peer support is another factor that was identified by many respondents, which supported them as they attempted to make sense of their worlds again. Peer support in this context is used to refer to the support both emotional and practical offered by other people who had a spinal cord injury. It is not used in this context to refer to age/life stage peers.

The support offered by peers with a disability can help maintain hope, provide information and practical tips about how to achieve certain tasks. Peers can sometimes

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provide emotional support that is more easily received because there is a sense that the disabled peer really understands what it is like. Peers can sometimes challenge or confront, in a way that is more readily received, than family members or rehabilitation professionals can because of this sense of really understanding what it is like.

"One of the biggest benefits to me was talking to other people who had been in chairs for a long time, especially country people, like (a man with quadriplegia who runs his own farm). Finding out about how he gets around on the farm was a big help to me. The support of other wheelies in SIU is a big help. There is always someone egging you on. They always rally around when you're having a downer. Some of them are really negative. You just have to avoid them. (ID12: 101).

"When I was still in hospital seeing people (past patients) coming up made things a lot better for me. It helped me to see the possibilities. I could start to see light at the end of the tunnel. (ID30: 59).

"Other patients are the best encouragement. Seeing what they can do made me want to have a go too. Just sitting there is boring. Seeing other people laughing and carrying on and having a good time in a chair is a big encouragement. (ID33: 92).

The role model, information and encouragement provided by peers with a disability are important in the overall adjustment process as evidenced by the statements by the respondents above. Rehabilitation programs can actively encourage and facilitate peer support programs which link people with insiders to take advantage of the benefits of this type of social support.

FRIENDS (NON-DISABLED) Other factors that impact on the ability of the injured individual to effectively utilise coping strategies are impacted on by the social support received from friends. The fear

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that the disability will prevent friends from accepting them and seeing them as the same person they were before the accident is very real. For many people with spinal cord injury and who are dependent on a wheelchair for their mobility there is sense that they felt they needed to take the responsibility for breaking the ice and the initiative in maintaining the relationship. Friendships that respect the injured individual as an equal do a lot in maintaining or rebuilding the damaged identity of the disabled person. For some there was a sense of an initial barrier that they had to overcome or prove themselves before being accepted. If they successfully achieved this the sense of self worth was enhanced and self-identity able to be maintained. For the ones who were less successful or who did not have as well established networks of friendships, isolation and despondency was a greater risk factor.

"Ever since I came home my friends came and got me. Theyve been really supportive. I think that was the thing that got me through the most. (ID2: 30).

"When I met my mates for the first time after I came home, there was a bit of uncertainty at first. Once I started talking and mixing with them, they realised that I'm still the same bloke. Some people were surprised that I'm in a wheelchair, but they soon work out that I'm still the same bloke. (ID42: 168).

"Friends were still here when I came back. I had to break the ice. At first people sort of backed off. I had to prove that I was still the same person. (ID12: 106).

Some did not think the nature of friendships would change because of their injury as the follow quote shows:

"This accident hasn't changed things with my friends. We still see each other and I'll be able to go down to the Club again. (ID13: 108).

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However maintaining friendships proved more problematic than anticipated and just six months post discharge from hospital the respondent reported that he had only two friends and was very lonely.

"I tried going to the Club but the poolroom is downstairs and I can't get there unless someone carries me down. I feel so useless. Not many of friends have maintained contact so I don't bother going down any more. I still have two friends who call in for a beer or two on a Sunday afternoon. They are about the only friends I have left now. I used to have lots of friends. (My wife) keeps trying to get me interested in things but it is so hard to make new friends. I don't feel like going out. I would feel too self-conscious if I tried to break into a new group. (ID13: 110).

At the three-year interview this respondent reported that he still had only a couple of good friends but he was much more positive when he described his social situation.

"I have a couple of friends that drop in fairly regularly and we have a beer together. They are good friends and I enjoy their visits. (ID13: 112).

COMMUNITY SUPPORT SERVICES The availability of appropriate community support services, especially personal care and life style support, was another factor that influenced the ability of the individual to cope with the advent of a disability and overcome the subsequent disruption within their life systems. Adequate community support provided the platform for the injured individual to develop the skills and emotional stamina to go on. Without adequate community support life can be very difficult and the individual can become discouraged. However, some people coped very successfully, even in the absence of adequate community supports.

Arrangements of community agencies often placed restrictions on the lifestyle, social roles and family members, which caused difficulties in the adjustment process. For

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example one respondent was forced to chose between going to bed at 7.30 p.m. or relying on a married daughter to come to assist with her bedtime routines.

"I have to go to bed every night at 7.30 when the carers come. (My daughter) used to come in at night to help me but it wasn't right to expect it of her. She has her own family. So I just told the carers to do it. (ID4: 45).

On other occasions the assessment procedures to qualify for assistance and the red tape governing the provision of services from community agencies negatively impacted on the adjustment process. This was especially true when community workers had limited knowledge of the disabilities associated with spinal cord injury or failed to adopt an inclusive approach to people with disabilities. Services were fragmented and it was sometimes necessary to utilise services from a variety of agencies to meet basic needs. This was unduly intrusive and disruptive to the individual and their familys lifestyles as evident in the following quote.

"I also got depressed because (the community agency) took months to get things (home modifications) organised. I had to have showers outside all that time and that was quiet demoralising. (ID11: 95).

The lack of services was another factor that negatively impacted on the adjustment process. This was particularly true for the most severely disabled. Many of the services were funded for aged care and were not structured in a way that encouraged inclusion for younger clients with disabilities. The lack of services placed additional stress on family relationships, as it was often family members who compensated for the lack of care.

"I worry that it will all be too much for (my wife). At times she gets very tired and she is cranky a lot of the time. If we could only get enough Attendant Care I think we could survive. I worry that it will be too hard for her and that she might leave me. (She) just wants to be my wife. She is very short tempered these days. I think

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there is too much pressure on her. It is affecting our relationship. (ID35: 11011).

Twelve months later when I interviewed this respondent he had received additional personal care support and I wrote the following note, following the interview, which reflected the positive impact of being adequately supported.

"ID35 and his wife seemed much more relaxed than on previous occasions. Their additional attendant care has just been organised and this seems to have improved their quality of life enormously. It took more than 18 months post discharge before they received the additional funding for the extra care hours they needed. (ID35: 121).

"The carers are a big issue. The (staff from the nursing agency) are too intrusive. When I have been sick they want to talk to my doctor. They are always very rushed. I would prefer to have my own carer. (ID41: 200).

An extreme example of the impact of the lack of services on adjustment was reflected in the quote below. ID23 was a middle-aged man living in a nursing home for the elderly because there was insufficient care available in his local community and he had no family to assist him to live alone.

"I was offered a Department of Housing home in (home town) last year but I had to turn it down because I could not get enough community support to live outside the Nursing Home. I do want to live more independently but I have almost lost all hope of it ever becoming a reality. (ID23: 177).

On the other hand social support from community organisations, which was provided in way that was more inclusive and sensitive to the needs of the injured individual facilitated more positive adjustment.

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"The (vocational support agency) was very helpful. They arranged some work experience for me. It was all organised very quickly and that helped me get my confidence again." (ID20: 154).

"(Agency name) helped with the home modifications. The financial assistance made a big difference. The government helped out with a new computer to assist with my employment." (ID37: 136 &138).

Rehabilitation professionals from all disciplines have a key role to play in informing clients of the range of services available, making appropriate referral and advocating for clients both individually and as a group to ensure adequate community supports are available. This is particularly an issue for clients from rural or remote communities where services and funding are limited.

FINANCIAL RESOURCES The respondents went from 8% unemployed prior to injury, to 80% unemployed at the time of discharge from hospital. This had a serious impact on the financial situation of many respondents. Fifty-five percent of respondents were dependent on Social Security or Veterans Affairs payments as their sole source of income when they were discharged from hospital. As already reported, this changed as they returned to paid employment. The financial status and employment outcomes for the respondents are discussed in more detail in the next Chapter.

Access to the financial resources to maintain an adequate lifestyle made a major contribution to the individuals ability to cope with the difficulties they encountered as a result of their injury. On the negative side of the continuum, loss of income or significantly reduced income as a result of the injury made it much more difficult to cope.

"There hasnt been a good year since the accident. We are in debt and the debt is increasing. (ID16: 139).

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"Financially we couldn't have survived except for the help we have gotten from her (his wife's) family. (ID35: 111).

"Its really the kids I feel for most. I feel like they are growing up and missing out. There is so much that I would have liked to have done with them. I couldnt do things that I wanted to do with them, things like going to the Theme Parks. I would have liked to have done things for them that other people do but it is just hard. There is no spare cash. (ID40: 176).

"Once I start getting an income I would like to move out from home. I would like to buy my own home. It is difficult to plan while I am still on the Disability Support Pension. I havent had a regular income since the accident. (ID25: 11).

"I 've got no job. I'm on the pension, just living off the government. There's no self-esteem in that. Therefore I don't feel like I can speak up for myself. (ID29: 40).

Each of the above quotes gives voice to the impact of the loss of financial resources to the respondents. It is important that all sources of financial support are investigated and vocational options explored with the injured individual. Adequate financial resources increase the capacity to purchase other resources or services and thereby contribute to the enhancing quality of life as demonstrated below by the respondents who successfully sued for legal compensation for their injuries.

COMPENSATION Approximately 50% of the respondents were hopeful of obtaining some compensation (e.g. Compulsory Third Party Insurance). A few respondents were successful in their claims and received financial compensation from their insurer during the course of this

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study. This was reported as a significant factor in contributing to an improvement in their quality of life. For many respondents who were waiting for the settlement of their litigation claims, it appeared that life was on hold. It was a difficult time because they did not have the financial resources to purchase many services to make life a little less stressful. As discussed in Chapter Two the first few years are the most difficult in the adjustment process. Adjustment may be better supported if access to additional resources were available during the early years. Some respondents indicated that they felt that life was on hold until the litigation issue was settled.

"Mainly I'm looking forward to getting the compensation stuff over with. The Compulsory Third Party Insurance claim will probably take another 6 years to settle. I'm putting a lot on hold until after then, things like getting a job. (ID42: 170).

The quote below is from a woman who was self-employed and had an incomplete injury with ongoing slow recovery. There was a conflict for her between the need to work to maintain the business and the need to attend to physical therapy to maximise her recovery. Additional financial resources during this time would have made a big difference as reflected by her statement below:

"Compensation is not much good in three years time. We need the money now to relieve some of the strain. We could hire help if we needed it. I am trying to still do my job at work because we can't afford to hire staff. We'll lose the business if I don't keep working. (ID16: 135).

The hardship caused by years of deprivation while waiting for the court settlement of litigation and the improvement in the quality of life once it was settled are reflected in the comments made another respondent below.

"Financially things are very different now. You can't live on the pension if you have to pay rent. We can't afford to pay for petrol to go places with the distances

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involved. It is very hard for families. (My son) is a teenager now. He wants clothes and sports things. It's not fair to the kids. You ask me 'how are things going?' Well I'm stuck at home a lot of the time. I watch a lot of TV. Friends come around some times. Each day seems the same. I can't even afford to go and look at the shops. I have to save up just to go anywhere. It all costs in petrol just to go there and back and then if you buy anything you blow your whole budget for the next fortnight. I just have to dream a lot. Your life is really stuffed. You just have to put up with it. There is no use worrying about it. I just let things ride. If I were normal, I would be working, and then things would have been great. I could fix things up. (ID22: 171).

The above statement is in stark contrast to the following statement made by the same respondent once her settlement was received.

Life was pretty tough before I got my settlement. Just getting into my own house made such a difference. WE GOT THERE! WE DID IT! We bought a house near the mountain. It has a good view. We've done a lot to make it nice. We did the things we wanted to do. It has a pool. It has made such a difference just to be able to do things. Living on the pension we couldn't do anything. (ID22: 173174).

The impact of restricted financial resources and the uncertainty which surrounds the litigation system when seeking compensation for an accident, was further amplified in the statements by the respondents below:

"I'm still waiting for the compensation case to settle. Maybe then I can buy a car. Mostly I have to rely on friends for transport. That means I'm not as independent as I could be. My compensation from the accident should come through soon. That will make a real difference. I'll have some money to do things with. Im not sure how much to expect." (ID39: 165).

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The losses associated with an injury such as a spinal cord injury are far reaching and monetary compensation through the legal system allowed respondents to make adjustments in the environment that improved their quality of life.

"I hope that my court case will settle in about 12 months. I would like to build a house for about 4 disabled people to live in together with a full time carer on a share basis. I think (another disabled friend) might be interested in something like that. It would give me someone to talk to. It would give me my own home. I'm hoping that I'll get about $600,000 or more. I don't really know what to expect. I had only been working about 6 months before I had my accident. I was only 16 years old when it happened. It has really shattered all of my life hopes and plans. I was hoping to get my own truck eventually. I really like the outdoors. (ID41: 197).

EMPLOYMENT Vocational options are an outcome of the interactions between both the environmental resources and the intra-personal resources of the individual. Employment helps to enhance one's self-esteem, assists with reintegration into community roles, and provides income, which in turn can be used to enhance quality of life.

"I went back to work about a month after I got out of hospital. That was really good for me. The mates at work were very supportive and encouraging. I had a few bowel accidents to start with. That made things a little difficult but people at work were understanding. (ID6: 56).

"Work has been really good. They took me back and found me an easier job. They have really looked after me. (ID15: 128).

There can be both positive and negative aspects along the continuum. Some respondents experienced discrimination, which had the potential to have a negative impact on

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adjustment. All the respondents in the study who reported discriminatory practices took action to resolve the problem. For example one respondent reports that returning to his previous employment has been a positive experience but that he has experienced discrimination which restricted his role at work and prevented his career advancing. He pursued the matter with his Union and the Equal Opportunity Commission. His grievance was upheld and he was granted a full licence and a promotion 12 months later.

"Going back to work was a big plus for me. Work's been really good. There have been some problems (discrimination). I need a license to work and the "Higher Ups" will only give me a partial license. That's not right. I'm going to appeal. The people making the decision haven't even met me. They call paraplegia a disease therefore I fail the medical and as a result only get a partial license. I'll go to the Union and the Equal Opportunity Commission if I have to. (ID43: 185).

Some respondents set goals to return to work and undertook further study to equip them for different types of employment. This was a reflection of the goal setting strategy identified above in interaction with the environmental opportunities in the community.

"I started a job about a month ago. I'm working with (a government department) on their Telehelp Line. I had worked at the (a branch office) for about 5 months then I was unemployed for about 8-9 months. I first did some part time work in October 1995. I did some study at (a business college) and then I did two TAFE courses on business procedures before that. (ID18: 149).

Support from friends, vocational rehabilitation and prior employers was also identified as important.

"Friends offered me jobs, jobs that I could do from home. That helped me to pick up my interests again and got me doing things. (Vocational rehabilitation service)

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was very helpful. They arranged some work experience for me. It was all organised very quickly. (ID20: 154).

Other respondents needed to consider different employment options. At times changed vocational roles represented a significant loss. For other respondents it was seen as opening up opportunities. To some extent the view adopted reflects the coping strategy utilised by the respondents.

You tend to go through stages in adjusting. For example right now I'm thinking a lot about working. I would like to be able to work with machinery out in the bush like I used to. That might be too hard. There is a lady in (the next town) who might be able to offer me some office work. I'm having trouble accepting that I might have to accept an office job. (ID31: 73).

"Going back to work was a bit difficult. It took a bit to re-adjust. I had been away so long, it took me a while to settle in again. I'm all settled now. I'm trying to get more qualified so I can get a better job. I'm working in the cabinet-making workshop now. Before I was working outside on the building sites. I'm still doing my apprenticeship. I can do most things I just have to think a bit more. Before I would just pick up a cabinet and carry it. Now I get a trolley to take it. (ID39: 163).

The importance of employment in the adjustment process of the respondents is emphasised in the above data. Employment interacts with other life domains and has the potential to contribute to the overall adjustment by increasing financial resources, enhanced self-esteem, and re-integration into valued community roles. Interventions which support and expand the vocational options are vital.

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MOBILITY For most people who have sustained a spinal cord injury a wheelchair is their primary mode of mobility. Mobility in a wheelchair is affected by a number of factors including the accessibility of the environment, the appropriateness of the wheelchair and the functional ability of the user. The provision of appropriate mobility aids is discussed in more detail in the next chapter. However many respondents (up to 35%) did not have all of their prescribed equipment (including a wheelchair) at the time of their discharge from hospital. Factors that contributed to the lack of adequate mobility aids include, rigid regulations of government funding bodies, delays in insurance and litigation settlements, delays in the supply from retailers (many wheelchairs are imported from overseas) and lack of personal finances. In Queensland if the prescribed mobility aid is not received prior to discharge from the hospital, an alternative arrangement is usually made. This usually involves the hire of a wheelchair as a temporary measure. The range of wheelchairs for hire is very restricted, which means that one must often settle for a chair that is less than ideal. The cost of hiring a wheelchair is not usually subsidised so it also results in an additional cost to the individual at a time when they are already facing a number of additional financial demands. Appropriate mobility aids are essential to allow people with severe disabilities to live more independently, maintain dignity, and participate in community life. Appropriate mobility aids can facilitate the adjustment process while problems with mobility increase the barriers faced by the injured individual in the adjustment process as reflected below.

"When I first got home it was pretty hard. The hire chair I had was pretty old and crappy. I couldn't control it properly and that made me afraid to go out. It was pretty hard for the first few months. I couldn't go to town. It took about 6 months to get things sorted out and to feel like I was on top of things. When I finally got my chair that was good. I could do things for myself. (ID42: 166).

"Im still using the hire chair. I cant use it outside. That restricts me a fair bit. (ID7: 63).

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"Not being able to get a wheelchair that is really adequate for my needs made me feel really bad. I couldn't make a real choice. I was limited to the chairs offered by the (government-funded scheme). That is really bad. After all these wheels are MY legs. (ID29: 26).

Adequate mobility aids including wheelchairs are fundamental for people with spinal cord injuries. The respondents experienced a range of problems as evidenced above. The restrictions experienced constrained the quality and opportunity to engage in meaningful activities. Problems experienced with mobility interact with other life domains to either facilitate adjustment or compound adjustment problems. For example inadequate mobility aids can significantly restrict independence or vocational opportunities which in turn can impact on the individuals emotional response.

ACCESS Accessible housing is considered crucial for independent living (DeJong et al., 1984; Richards et al., 1999). The respondents encountered many problems related to access in their homes in the initial stages following discharge from hospital. Some of the problems were encountered because home modifications were not complete prior to discharge. Restricted access at times meant that the respondent was unable to enter or depart from their homes without assistance. The increased dependence imposed by this situation caused some respondents to lose confidence and even experience depression and become socially isolated.

"I'll also find it difficult because I'll be confined to small area of the house. This is because my modifications are not yet complete. (ID43: 183).

The above respondent (ID43) was referring to the fact that he would be very restricted in his home until the recommended modifications were completed. This compromised his role as a father because he could not access the children's bedrooms or the bathroom. It also meant that he could not eat meals with the family. He went on to describe the social

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isolation that resulted from his inability to enter or exit the home alone because ramps had not been completed and the resultant depression he experienced.

"Going home is a big change. You're all alone, just left by yourself. You can't get out and as a result you get a bit lonely and depressed. My home wasn't modified so I had to depend on others for every thing. That was very hard for me to accept. (ID43: 185).

The dependence and loss of dignity experienced by other respondents was reflected in their statements below. The extreme frustration of not being able to be independent in one's own home even when one has acquired the functional skills necessary for independence through rehabilitation was also evident. The frustration and depression experienced as a result had the potential to negatively impact on the longer term adjustment process.

"I just feel so bloody inadequate. Nothing seems right any more. I can't shower alone because the shower isn't fully accessible. We've only just gotten the ramps installed. Up until then I had to wait until my son or grandson could take me down the stairs to the bedroom. (ID13: 109-10: Six month interview).

"Because the house wasn't modified when I first got home (my wife) had to wheel me outside and wash me with a watering can. (ID11: 94).

In stark contrast is this statement made by a young man who had recently moved into accessible housing. The increased independence and freedom had a positive impact on his mood.

"I have just moved into a new purpose built house (provided by the Housing Commission). Moving into the purpose built house has made my life so much easier. I can do so much more for myself now. (ID30: 58:12 Month interview).

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The benefits of the increased access in the home environment are further amplified by the following quote from a young woman after her ramps were completed more than six months after her discharge from hospital.

"(The funding body) took months to get around to building my ramps after I went home. I was totally dependent on my boyfriend to get in or out of the house for all of that time. It really stressed our relationship. Now that I am more independent, I feel like I am more on an equal footing now. Before I felt like I was like a weight around his neck. I hate being dependent on other people. (ID32: 86).

Likewise environmental access in the community was an ongoing problem for many of the respondents. They encountered barriers that caused them to feel devalued as members of the community and to be frustrated in fulfilling valued roles both in family and the community.

"I hate it when I can't do things for them (the children) because of the chair. Like I can't go to the school to pick up a sick child because the school isnt accessible. I can't help out with classroom activities. The wife takes the kids to the swimming club - I can't go because I can't get in the pool. It makes me feel isolated from the family. For example my daughter recently won first prize at the swimming club and I couldn't be there. Those sort of things make me feel depressed." (ID1: 16).

"Access to buildings is a continual problem. I've had a few falls on footpath ramps. (ID43: 86).

"I get very frustrated with an inaccessible world. (ID32: 90).

As with mobility aids access is another of the environmental variables which interact with other life domains. Interventions which improve access both in the home and the community have the potential to make far-reaching impact on the overall adjustment outcome. Accessible communities open up opportunities for employment, recreation and

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generally create a more inclusive environment. Conversely inaccessible environments increase dependence and restrict opportunities with the potential for corresponding impacts on emotional responses.

TRANSPORT Because of limitations with mobility, transport is very important to people with spinal cord injuries. Lack of transport poses serious obstacles to adjustment. In fact 47% of the spinal cord injured individuals in one study indicated that transportation problems were the main obstacle to adjustment (Harrison & Kuric, 1989). While not identified as the main obstacle by the respondents in this study problems with accessing transport was a major issue for some respondents. For example the social isolation resulting from the lack of transport is reflected below.

"I dont ever go out, not out on an outing or anything like that. I go once a month to day respite in (a nearby town). The community bus comes and picks me up and takes me to (the nearby town). We play dice games, have a sing-a-long, play indoor bowls and do craft. Its OK. I meet up with a few friends. I would like to get out more but there is no transport. The solicitor is trying to get some money for a van out of the insurance company. There arent any wheelchair taxis so I just stay home. (ID4: 47).

The above respondents husband died during the course of the study and it initially appeared that she would not be able to attend his funeral due to lack of transport. Another local family offered to drive her in their privately owned modified van.

The isolation and loss of independence related to transport obstacles is further amplified in the statement offered by another respondent below.

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"I dont drive. Its too much of a risk with the disability. It just kills me (not being able to drive). I cant go here. I cant go there. Its harder and harder as I get older. Younger people can adapt more. (ID7: 68).

In contrast those who were independent in either driving or using public transport felt much more independent.

"I've got my driver's license now. It is so good to get that independence. I push myself around the supermarket now. It made such a difference when I got my driver's license. (ID22: 173).

"Buying a car allowed me to get out. It gave me my freedom. Before I got the car I couldn't really get out very much at all because there are too many hills around here for me to be able to push myself around. Now I go visit friends or (my partner) and I can just go for a drive around the area or down to shops to have a look around. We don't have much money to spend. We like to go to Southbank Parklands when we can. (ID30: 54).

"I'm still waiting for the compensation case to settle. Maybe then I can buy a car. Mostly I have to rely on friends for transport. That means I'm not as independent as I could be. (ID39: 166).

"If I had a car I would be out all the time. (ID41: 197).

Lack of transport options, the inability to utilise transport independently, being unable to own a vehicle and the inability to drive increased feelings of dependence and contributed to the social isolation of some respondents. Also as reflected above financial issues and functional ability also impact on the ability to access transport options independently.

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MEDICAL/HEALTH ISSUES The respondents described a number of medical and health issues which impacted on the adjustment process. Health concerns affected the emotional state and independence of respondents. The statements of the respondents provided below demonstrate the interactive effect between health and medical issues and other life domains which compound to impact on the adjustment process.

"I was very up and down emotionally for a long time. It seemed like I had one medical complication after another. That was what really got me down. I didn't feel like I was making any progress at all. (ID4: 40).

"When I left hospital I thought that I could deal with it (the spinal cord injury) real easy. I knew that I had to get on with life. Being sick and having no money for a car really gets me down. If I wasn't sick all the time I would have a better outlook on life - I think my future would be brighter I get depressed when I get sick. I don't have any real ambition. Being sick, being lonely gets you down some days. (ID41: 201-202).

"Dyreflexia is a real problem for me. I get a fussy head a lot. Sometimes its related to the bladder, then I get a full-blown headache. Ive lost a lot of physical strength, but I dont think about it much any more. (ID37: 135).

"The most difficult thing to cope with is bowel and bladder accidents, especially early on. It's not such a problem now. (ID24: 181).

"I've had a few health problems - I'm still voiding (incontinent) a lot. That's very embarrassing. I can't go out. Can't go visiting. It's also exhausting because I'm always changing clothes and washing sheets. I don't go out unless I have to because I'm always worried about having an accident. (ID32: 83).

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In Chapter Two the issue of avoidable medical conditions was discussed in relation to poor adjustment. The most common medical complications related to spinal cord injury are urinary tract infections, pressure sores and chest complications. The risk of medical complications can be substantially reduced with compliance to care routines and healthy living. Where there is a failure to accept the lifestyle changes associated with spinal cord injury, compliance may become problematic. Non-compliance may be the result of adjustment difficulties or depressive illness. On the other hand depression and despondency can result from the lifestyle restrictions that are caused by illness. Causal links are difficult to establish.

SUMMARY Chapters Six, Seven and Eight present the data obtained from the qualitative interviews of the study. A model of adjustment following spinal cord injury, emerges from the data, and is proposed and discussed. The model is based on an ecological perspective on adjustment and recognises that the sudden onset of a spinal cord injury results in a disruption to every sphere of life for the injured individual. Adjustment is a dynamic process in which coping strategies are used to restore balance within life spheres including one's psychosocial sphere, the environment in which one functions and the physical body (health). The ability to implement coping strategies and their effectiveness are in turn impacted by one's psychological make-up, the environment in which one functions and the physical condition of one's body.

The qualitative data obtained from this study establishes that a wide range of coping strategies are employed by the respondents and used simultaneously. The data confirms the adjustment process is a complex and dynamic process and tells the story of the coping efforts of the respondents.

The respondents also identify a number of environmental and health related factors that impact on their coping efforts and these are discussed above. It is important to note that

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the environmental and health related factors, which impact on the coping efforts of the individual occur at multiple levels and have a multidimensional impact on the adjustment process. For example the lack of adequate funding for the supply of basic mobility aids or home modifications reflect inadequacies at the broad societal level and reflect priorities for government resource allocation. Government resource allocation is largely determined by societal attitudes. Thus the lack of funding allocated to programs to assist people with disabilities to participate as equal members of our communities is a reflection of the lack of concern or awareness generally in our society for people with disabilities and their needs. It could even be suggested that this lack of concern is a systematic form of societal neglect as evidenced by the respondent who was forced to have a shower outdoors using a watering can because of inaccessible housing. Even those with the most effective coping strategies would be challenged in the face of such overwhelming challenges.

As suggested above the coping efforts interact with environmental factors and health related factors to produce the adjustment outcome. Adjustment is not a static conclusion to the coping process. The adjustment outcome can be measured at a point in time but it must be recognised that life adjustment is an ongoing process of living. People with spinal cord injury are in this sense no different from any other living person. Their adjustment to life is a constantly changing state of equilibrium. A coping strategy may cause change in the environment. Change in the environment may result in either positive or negative response from the individual and others around them. The response in turn changes the dynamics of the situation. Thus adjustment can never be conceptualised as a fixed outcome. Life goes on.

Having stated that adjustment is an ever-changing process of life, it is possible to take snapshot views of adjustment outcomes. The snapshot of adjustment over time for the respondents is presented in the next Chapter. Chapter Nine presents the quantitative data collected in the study. It looks at adjustment outcomes of the respondents at the time of discharge from hospital, six months, 12 months, and 24 months and 36 months post

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discharge from hospital. Change in adjustment over time is presented and the relationships between factors are examined.

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CHAPTER NINE ADJUSTMENT OUTCOMES FOLLOWING SPINAL CORD INJURY

The quantitative data presented in this chapter reveals the outcomes and achievements of the group of individuals who collectively participated in this study. These outcomes indicate that overall the respondents have made a good adjustment to their injuries and resultant disabilities. The process by which these adjustment outcomes are achieved is the interaction of the multidimensional array of factors presented in the previous chapters. In the conceptualisation of this study adjustment was defined as the result of the interaction between the psychosocial resources of the individual, health related factors and environmental variables within the systems in which the individual operates and functions (Trieschmann, 1987; Trieschmann, 1988). This chapter is structured around the variables presented in the Variable Table in Chapter Four (Table 4.1), which reflects the definition of adjustment adopted in the study.

The presentation of outcomes in the Chapter is arranged around the variables identified in Table 4.1. Health related factors are presented first and include self-reported medical problems, pressure sores and hospital admissions. Environmental factors impacting on adjustment are reported secondly and include financial resources, environmental accessibility and personal assistance. Lastly the psychosocial resources of the individual are presented by considering outcomes in the areas of; depression, life satisfaction, education, and vocational activities. The findings in each of these areas are presented and discussed. As discussed in Chapter Four (page 105) sample attrition was an issue over the course of the study. The sample consisted of 48 respondents at the time of discharge from hospital however due to attrition the sample was reduced to: 44 respondents at six months, 40 respondents at 12 months, 35 respondents at 24 months and 33 respondents at 36 months post discharge from hospital. These are the sample numbers (N) reported in each of the graphs in this chapter.

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HEALTH RELATED FACTORS In the cluster of health related outcome measures a number of indicators were considered. These included: the degree of disability, hospital admissions, and pressure sores. Degree of disability was determined by the level of the injury and the need for personal care assistance (i.e. whether they were functionally independent or required assistance to perform the tasks of daily living). Health problems were measured by the number of reported medical problems that required intervention by a medical practitioner, the number of admissions to hospital and the number of pressure sores experienced. Selfrated perception of health was measured by asking respondents to rate the extent to which they perceived their health to be a problem on a five point Likert scale with five being the most serious problem.

Degree of Disability Sixty per cent (n=29) of the sample had quadriplegia level injuries. This included those with both complete and incomplete lesions. Respondents were asked to indicate if they required assistance with personal care tasks such as bathing, toileting, grooming or eating. At the time of discharge from hospital almost half (46%, n=22) indicated that they required assistance with personal care tasks. As can be seen in Figure 9.1 the need for personal care assistance decreased steadily to 39% (n=13) over the three years of the follow-up. This reflected improvements in functional ability, increased independence and enhanced confidence in the respondents over the course of the study. As confidence and functional independence improved and respondents moved into more independent living arrangements as discussed later in this chapter the respondents may have lost access to family members who performed personal care tasks when they lived at home.

Changes in the requirements for assistance varied with the task for which assistance was required. Thirty-one per cent (n=15) required assistance with eating when discharged from hospital while only 18% (n=6) reported requiring assistance with eating at 3 years post discharge. However the need for assistance with dressing remained stable at 36% over the three years course of the study.

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Figure 9.1: Respondents Personal Care Requirements

Bars show counts

25

20

Legend
15

Requires Personal Care Support Does Not Require Personal Care

10

Discharge n=48

6 Months n=44

12 Months n=40

24 Months n=35

36 Months n=33

Medical Problems In the six months following discharge from hospital 23% (n =10) of the respondents had not consulted a medical practitioner for any medical problems (Respondents were asked to report only the number of consultations that actually related to medical problems and exclude routine consultations). However another 11.5% (n = 5) consulted a doctor in relation to medical problems on ten or more occasions in the first six months. Thus there was a great range among the respondents in relation to how medical services were utilised in the initial period following discharge from hospital. See Figure 9.2.

In the following six months (i.e. 6-12 months post discharge) the percentage not requiring medical intervention remained stable at 23% (n = 9) but the percentage who required medical intervention on ten or more occasions increased to 17.5% (n = 7).

At 24 and 36 months the percentages not requiring medical intervention were 14% (n = 5) and 27% (n = 9) respectively. The number requiring ten or more interventions was 37% (n = 13) at 24 months and 24% (n = 8) at 36 months. (NOTE: This is for a twelve month 201

period as compared to the first year which is reported in six month increments). However 14% (n = 5) of the respondents required 20 or more medical interventions for medical problems in their second year post discharge. This averages to more than 1.6 medical interventions per month for each member of the respondent group. Less than half that number, 6% (n = 2) required 20 or more medical interventions in their third year.

Figure 9.2: Number of Respondent Medical Consultations Over Time

30

Legend
20

Bars Show Number of Respondents No Medical Consultations 1-9 Medical Consultations 10-20 Medical Consultations More Than 20 Medical Consultations

10

0 6 Months n = 44 12 Months n = 40 24 Months n = 35 36 Months n = 33

Hospital Admissions Between 20% (at 6 and 36 Months) to 30% (24 months) of the respondents reported hospital admissions during the period between follow-up (See Figure 9.3). Reasons for hospitalisations included pressure sores, urinary tract infections, bowel obstructions, pneumonia, surgical removal spinal instrumentation, broken bones, and kidney or bladder stones. Another Queensland study reported a rehospitalisation rate of 31% (n = 21) in the first two years for a sample (n = 68) of people with spinal cord injury who were also injured in the early 1990's (Pershouse et al., 2000). The rates and reasons for injury were very similar to the findings of the current study. A New South Wales study reported a readmission rate of 50% in the first two years (Craig et al., 1999). Six respondents

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required hospital treatment with length of stays in excess of 28 days over the three-year course of this study.

These high rates of hospital readmissions are concerning because of the impact on the individual's quality of life, family and social relationships and vocational pursuits. Health concerns is a major predictor of depression and reduced subjective quality of life. Several respondents reported fears related particularly to pressure sore management and urinary tract infections. In addition the increasing cost of health care services is an important consideration especially if the conditions requiring treatment are preventable or the result of adjustment problems as suggested in some research (MacLeod, 1988).

Figure 9.3: Number of Respondent Hospital Admissions Over Time

Pressure Sores Pressure sores are a commonly reported medical complication following spinal cord injury. Pressure sores can at times be related to self-neglect and are suggested by some authors, to be an indicator of less successful adjustment outcomes (Anderson & Andberg, 1979; Krause, 1998b; MacLeod, 1988).

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In the first 6 months following discharge from hospital 80% (n = 35) of the sample group reported that they had not had any problems with pressure sores. However 14% (n = 6) had at least one pressure sore and another 7% (n = 3) had three or more pressure sores in the first six months following discharge from hospital. (The mean number of pressure sores experienced during this period was 0.4).

At 12 months post-discharge 77.5% (n = 31) said they had not been troubled with pressure sores in the intervening twelve months but 20% (n = 8) had at least one pressure sore during that time and only one person reported having three or more pressure sores. (The mean number of pressure sores during that time was 0.6).

At 24 months the number of pressure sores reported was at the highest for the follow-up period. Seventy seven per cent (n = 27) reported no pressure sores but 17% (n = 6) reported at least one pressure sore and 5.8% (n = 2) reported more than three pressure sores since the last interview, with one respondent reporting more than 10 pressure sores. At the 36 month follow-up, 82% (n = 27) reported no problems with pressure sores in that twelve-month follow-up period, and 12% (n = 4) reported one pressure sore. Another 6% reported three pressure sores but none reported more than three pressure sores in that twelve-month period. The mean number of reported pressure sores decreased to 0.4 in the third year post discharge. See Figure 9.4.

Pressure sores are largely avoidable and much attention is devoted to teaching skin care techniques and pressure management in the spinal rehabilitation program. Pressure sores are most common on the buttocks and the only successful treatment involves removing pressure from the affected area until healed. This usually involves being confined to bed and results in substantial disruption to any normal activities of living. The consequences of not complying with this regime are serious and can result in death if neglect is prolonged. For example it may take weeks of bed rest to heal a pressure sore. During this period personal care needs are consequently increased. If the sore is advanced surgery and hospital care may be required. Thus the impact of pressure sores is significant both for the affected individual and in terms of costs to the health care system.

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Figure 9.4: Number of Respondents Reporting Pressure Sores Over Time

Bars show counts

30

Legend
20

No Pressure Sores 1-2 Pressure Sores 3 or More Pressure Sores

10

0 6 Months n=44 12 Months n=40 24 Months n=35 36 Months n=33

Essentially the same group of respondents were able to avoid pressure sores throughout the study period. Note n = 27 respondents were not troubled with pressure sores at both 24 and 36 months post discharge. There was little movement between the group of respondents who had pressure sores and those who did not. The respondents who had pressure sores tended to have pressure sores at multiple points of follow-up. At times the same pressure sore was present at more than point of follow-up, that is, the pressure sore had not healed for 6-12 months. This suggests that the respondent was not complying with recommended treatment regimes. There may have been a number of reasons for non-compliance. As discussed in Chapter Two it may have been related to self-neglect or even a passive suicide intent. As discussed in Chapter Six one of the two respondents who committed suicide had multiple long-standing pressure sores. On the other hand if one does not have adequate personal care assistance it is very difficult to remain in bed and avoid putting pressure on the affected area. Thus non-compliance may be the only means of survival if one does not have adequate social supports. Non-compliance may also be related to lack of understanding of the serious consequences of failing to follow care regimes. It is clear that there is a group of up to 20% of respondents who had

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recurring or persistent pressure sores. Further research is required to identify demographic, personal or environmental factors that contribute to pressure sores, especially those cases where pressure sores persist or continually recur.

The majority of respondents were relatively healthy throughout the course of the investigation and required minimal medical interventions. However a group of up to 30% of respondents required extensive medical intervention including hospitalisation and pressure sore management.

ENVIRONMENTAL FACTORS As presented above the medical or health issues confronted by the person with a spinal cord injury are concerning. The impact on the individual and their quality of life is substantial. Periods of hospitalisation and illness have emotional, physical, social and economic consequences for the individual. The respondents themselves illuminated some of the consequences as presented in Chapter Eight. Causal factors relating to health and medical problems are difficult to establish, but the data suggests that causation is a complex process. There are a number of environmental factors that impact on the individual's adjustment process. These include the financial resources available to the individual, the living arrangement and choices related to living arrangements, home access, mobility, equipment issues and a range of other variables, such as social support and community attitudes that impact on the individual and their adjustment process. Environmental factors impact on the adjustment process both directly and in interaction with the intra-personal resources and coping responses of the individual.

Income As shown in the previous chapter reduction or loss in income seriously affects participants' outlook on life, the ability to access the resources necessary to fully engage in activities in the community, and the ability to plan for the future. Many participants indicated that they felt that life was on hold because of lack of adequate financial resources. The qualitative data presented substantiates these perceptions. When

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respondents received compensation through the legal system the enhanced financial resources at their disposal substantially changed their outlook on life and the options available to them as discussed in the previous chapter.

Mean income received by the sample group went from $412 per fortnight, at the time of discharge from hospital, to $691 per fortnight at three years post discharge. That was an average increase of $279 per fortnight. The range was from no income at all to $1270 per fortnight at discharge. The range at three years post discharge was from $290 - $2400 per fortnight. At discharge more than 70% (n = 31) had an income of less than $400 per fortnight while three years later less than 40% (n = 11) had incomes of less than $400 per fortnight.

The increase in income was largely a reflection of the ability of individuals to return to paid employment. By year three some individuals had also received substantial compensation payments from their insurer and had investment income which also contributed to the overall increase in income levels reported by the group. An example of the interaction between environmental factors (such as financial resources) and other life domains is seen: as financial resources increase so do the life choices available to the individual as presented in Chapter Eight. Increased life choices subsequently enhanced the sense of control over ones life and therefore independence. Greater independence promotes economic self-sufficiency and greater social independence (Tate et al., 1994).

Living Arrangements When a person sustains a spinal cord injury, it often results in many life style changes including the amount of care that one may require in simple tasks of daily living. The support services available in the community are often not sufficient to meet the complex care needs of a person with a severe disability (Brown, 1992; Whiteneck, 1994; Widerstrom, Felipe, Broton, Duncan, & Yezierski, 1999). As a result people who have sustained a spinal cord injury are often forced to rely on family or friends for assistance with basic care needs. Forty percent (n = 19) of participants in this study returned to live 207

with their parents at the time of their discharge from hospital. Increased need for physical assistance may have contributed to this pattern, as well as other factors such as financial and economic issues, lack of confidence and the need for increased emotional support. Over the period of the study the number who resided in their own homes increased by 17% and the number residing with parents correspondingly decreased to 22% (n = 11) as reflected in Figure 9.5 below. This was mostly likely a reflection of improvements in physical function, resulting in increased independence in daily living activities, confidence as well as enhanced financial security in the group.

Figure 9.5: Respondents Living Arrangements Over Time

Bars show counts

20

Legend
15

10

Own Home Parent's Home Other Hospital/Nursing H Living With Friends

0 Discharge n=48 6 Months n=44 12 Months n=40 24 Months n=35 36 Months n=33

Equipment and Home Accessibility Thirty five percent (n = 17) of the participants were discharged from hospital before they received all their prescribed equipment. This compares with 25% of patients discharged from a Spinal Unit in the United Kingdom who were discharged without receiving all of their prescribed equipment (Inman, 1999). The percentage of respondents who reported not having all of their equipment supplied climbed to 75% (n = 33) by six months post discharge from hospital. This increase may be due to the way that individuals responded 208

to this question in the survey. It seems likely they believed that they had most of their equipment, but after discharge realised the impact of items of equipment they were still awaiting once they faced the stark realities of life outside the protected environment of the hospital. At 12 months post discharge this number had climbed higher because the issue of equipment repair and servicing was starting to impact. At 12 months post discharge 85% of respondents reported that they were either still awaiting supply or repair of some of their equipment. At both 24 and 36 months post discharge the number remained stable at 74% and 73% respectively as can be seen in Figure 9.6 below.

Figure 9.6: Respondents Equipment Supply Over Time

Bars show counts

30

Legend
20

All Necessary Equipment Supplied and Maintained Awaiting Supply or Repair of Equipment

10

0 Discharge n=48 6 Months n=44 24 Months n=35 12 Months n=40 36 Months n=33

It is well documented that access to adequate mobility aids and basic aids of daily living has a strong link to the success of rehabilitation outcomes and quality of life achieved by people with spinal cord injury (Harrison & Kuric, 1989; Inman, 1999; O'Day & Corcoran, 1994; Tate et al., 1994). The cost of such equipment can be substantial, sometimes in excess of $60,000 for a person with a high level quadriplegia. This may include items such as a power drive or manual wheelchair, mobile shower commode chair, pressure relieving cushions and mattresses, electric beds, environmental control units, urology equipment and many smaller but essential aids of daily living. In

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Queensland basic items for independence in the home are supplied by the Health Department for clients who receive a pension or allowance from Centrelink. Clients are often required to cost share with the Health Department to obtain equipment that best meets their needs and enhances their independence. This places an additional financial burden on this group of people who already have substantially increased costs of living associated with their disability. In addition because of budgetary constraints clients are often placed on a waiting list for the supply of essential items equipment. As a result discharge from hospital may be delayed or alternatively they be discharged but forced to live without the equipment that is adequate for their needs (sometimes for many months). An additional financial penalty may be incurred if equipment is hired privately while awaiting supply through government assisted schemes, thus increasing the financial burden.

This is extremely concerning when the implications for medical complications, loss of independence, impact on vocational outcomes, reduced quality of life and associated psychological implications are considered.

Likewise the availability of fully accessible accommodation plays an equally important role in the achievement of independence and quality of life (DeJong et al., 1984; Forrest & Gombas, 1995; Richards et al., 1999; Tate, Forchheimer, Daugherty, & Maynard, 1993). As with the supply of equipment, many of the individuals in this study were discharged from hospital to homes that were not fully wheelchair accessible. On discharge from hospital, 53% reported that their homes were not fully wheelchair accessible. Forty five percent of spinal cord injured patients in the United Kingdom were discharged to homes that were not fully accessible (Inman, 1999). The percentage of individuals who occupied inaccessible housing steadily decreased throughout the study. However 20% of the respondents were still reporting that their homes were not fully wheelchair accessible at 36 months post discharge (See Figure 9.7).

In Queensland no government assistance was available to provide assistance to modify privately owned homes during the course of data collection for the study. Accessible

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accommodation could be provided through public rental schemes but waiting lists were in excess of three years in many areas. A typical highset Queensland home would commonly require the construction of ramps or installation of a hydraulic lift to access the house as well as substantial modification to the bathroom and the widening of doorways to facilitate wheelchair access. Additional modifications may be required to make the kitchen and other areas of the home wheelchair friendly. Since this study was undertaken there has been the introduction of some pilot programs that give minimal assistance with modifications to privately owned dwellings have been introduced. However these pilot schemes do not cover the whole of the State and there is little consistency in the way the various schemes are administered, which results in inequities in access to assistance with the costs of home modifications for people with disabilities.

Figure 9.7: Respondents Home Accessibility Over Time

Bars show counts

30

20

Legend
Home Accessible Home Not Fully Accessible

10

0 Discharge n=48 6 months n=44 12 Months n=40 24 Months n=35 36 Months n=33

The implications of not having the equipment or housing required to achieve optimal independence in this group of individuals with spinal cord injury is of concern. These concerns are further compounded by the sustained and long-term nature of these problems.

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There can be a range of environmental factors that impact on the individual. The environment of each person who sustains a spinal cord injury is unique to their situation, community and affected by both inter and intra-person factors as already discussed. The psychosocial resources of the individual have an important role in the adjustment process and interact with both the heath and environmental factors discussed above to influence the adjustment outcome.

PSYCHOSOCIAL FACTORS A variety of psychosocial factors were considered in the study. They included education, employment, depression, life satisfaction and problems encountered. Education and work history were reported with the psychosocial factors because they were conceptualised as integral to the psychosocial resources of the individuals in the study as discussed in Chapter Four. Four other measures of psychological adjustment were also used in this study as indicators of psychosocial outcomes. These included three measures from the Life Situation Questionnaire (LSQ) for use in follow-up studies of spinal cord injured populations (Krause, 1991, 1992d; Krause & Crewe, 1990) and the Center for Epidemiological Studies Depression Scale (CES-D) (Radloff, 1977). The three LSQ subscales were Life Satisfaction, Self-Rated Adjustment and Life Problems. These four measures provided a strong multiple measure approach to the assessment of the psychological resources of the individual. When combined with the data describing other variables impacting on the psychological resources of the individual such as educational activities and vocational factors, a comprehensive description of the psychosocial resources of the sample group will be presented.

Education The pre-injury educational achievements of the respondents is reported in Chapter Five, where it was noted that 70% of the respondents had 12 years or less formal education. Thirty three percent (n = 17) of the participants undertook some further study during the course of the project, ranging from short TAFE courses to completing a university degree. There was a predominance of computer training undertaken during the three years

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following injury. Some individuals received financial support to undertake these courses from vocational rehabilitation organisations such as the Commonwealth Rehabilitation Service.

Generally educational activities are considered as a component of vocational activities undertaken by individuals post injury. Undertaking further study post injury and higher levels of education are consistently demonstrated to predict positive employment outcomes (El Ghatit & Hanson, 1979; Hess et al., 2000; Krause et al., 1999; McShane & Karp, 1993; Murphy et al., 1997; Noreau et al., 1999; Tomassen et al., 2000). This finding is particularly interesting given the employment outcomes reported below. Of all cases entered in the National Spinal Cord Injury Database in the USA only 15% had undertaken any further study following their injury. The National Spinal Cord Injury Database includes subjects who would be many years post injury (Dijkers et al., 1995). While the Queensland level of education may be lower than that reported in the USA, at the time that injury is incurred, the percentage undertaking further study at an early stage post-injury is higher. This may be a factor impacting on the employment outcomes reported below.

Employment and Work History The most dramatic change in employment status was observed in the period immediately following discharge from hospital, as would be expected. Those in full-time employment dropped from 60% prior to injury to 6.1% immediately following discharge from hospital. When all employment categories (full-time, part-time and self-employed) were considered there was a drop from 83% pre-injury) to 14% immediately following discharge from hospital). However nearly 41% of the sample had returned to some form of employment at just 6 months post discharge from hospital, and 7% were engaged in study. More than half of the sample (51.7%) was employed and another 6.5% were engaged in some form of educational activity by the third year post discharge.

Job satisfaction is another very important aspect to consider when discussing the employment situation of any group. The participants reported a high degree of job 213

satisfaction prior to their injury but their reported job satisfaction deteriorated seriously following their injury and subsequent return to paid employment. Participants were asked to rate their satisfaction with their present employment situation on a scale of one (very dissatisfied) to five (very satisfied). At the initial interview they were also asked to rate their satisfaction prior to their injury. Seventy one percent reported that they were either satisfied or very satisfied with their employment situation prior to injury. At six months post discharge only 24.5% were able to report that level of satisfaction. By three years post discharge job satisfaction for this group had dropped even further with only 20% reporting that they were satisfied or very satisfied in their employment. This represents a substantial decline in job satisfaction and one would assume this would impact on their reported overall life satisfaction, which will be discussed below.

Figure 9.8: Respondents Employment Status Over Time

40

Bars show counts

30

Legend
Full-Time Employment Part-Time Employment Self-Employed

20

Student Unemployed Retired

10

Prior to Injury n=48

Discharge n=48

6 Months n=44

12 Months n=40

24 Months n=35

36 Months n=33

The fact that over half of the sample were engaged in vocational activities by the third year post injury was an unexpected finding and not consistent with the findings reported in overseas studies. A 1991 study showed that only 12.6% of people with a spinal cord injury in the USA were employed two years post injury and this increased to 38% twelve years following injury (DeVivo, Richards et al., 1991). Other recent research into 214

employment following spinal cord injury in Australia would suggest there may be some unique factors operating in this country, which contribute to higher employment rates among the spinal cord injured population in Australia than in other parts of the world. Recent studies of employment in spinal cord injured populations in Australia range from 31% to 47% (Athanasou et al., 1996; Crisp, 1990a, 1990b; Crisp, 1992b; Engel et al., 1998; Murphy et al., 1997). The mean time since injury was 12 to 14.5 years in all of the reported Australian studies. Findings of the present study report the highest rates of employment of any spinal cord injured sample reported in Australia to date. As the findings of this sample started to emerge it was initially suggested that this rate of return to employment was the result of some benevolent action on the behalf of sympathetic employers toward the injured worker. However the sustainability and the increasing employment rate demonstrated in this sample over time would not support that suggestion. Only time will tell if other factors will impact on the respondents with the passage of time since injury. There is some emerging evidence to suggest that early ageing issues following spinal cord injury could reduce employment rates as time since injury increases (Krause, 2000; Krause, 1998a).

The respondents in the study would appear much more successful in returning to paid employment and maintaining it than their counterparts overseas.

Despite the longstanding perception that people with spinal cord injuries experience major problems this study indicates that many are well on the way to re-establishing roles and re-gaining independence in the community at a very early stage. However their reported job satisfaction was less than it was prior to injury and shows a pattern of decreasing as time since injury increases.

Depression Outcomes Depression outcomes were measured using the Center of Epidemiological Studies Depression Scale (CES-D). Depression is reported using the recommended scale cut-offs as described in Chapter Four. Figure 9.9 shows the percentage of respondents in each level over each of the five points of measurement. It can be seen that the depression level 215

of this group of respondents increased following discharge from hospital. At the time of discharge from hospital approximately 23% of respondents were either moderately or severely depressed. This climbed to 39% by six months post-discharge but dropped to 35% at 12 months post-discharge and continued to drop to 29% by two years postdischarge and then to 26% at three years post-discharge with no one in the severely depressed category at that time.

Figure 9.9: CES-D Scores Over Time

(Shown as a percentage of the whole group at each point of measurement)

SCORES 0 -15.5 Not Depressed 16 - 20.5 Mild Depression 21 - 30.5 Moderate Depression < 31 Severe Depression

Discharge Median = 10.5 n = 48 64.6% 12.8% 8.4% 14.7%

6 Months Median = 15 n = 44 52.3% 6.8% 18.4% 20.5%

12 Months Median = 13 n = 40 57.5% 7.5% 12.5% 22.5%

24 Months Median = 15 n = 35 58.8% 11.7% 14.6% 14.6%

36 Months Median = 7 n = 33 71.0% 3.2% 25.9% 0%

This might be as expected. People receiving rehabilitation within a specialist spinal unit have only experienced life with their newly acquired disability within the supportive and relatively protected environment of the rehabilitation hospital. Staff of the rehabilitation unit accept the limitations imposed by their disability and are comfortable being around people with disabilities. The environment is wheelchair friendly and assistance is only as far away as the nurse call button. Life experienced outside the hospital may be more difficult than anticipated by the newly discharged person with a spinal cord injury.

These findings may actually under-represent the real picture to some extent, as those respondents who were lost to follow-up may have been more representative of the more depressed range of scores. There were two respondents who committed suicide during the course of this study and at least one other severely depressed respondent who withdrew from the study. It follows that these respondents may have fallen within the depressed

216

range of scores had they been able to complete the study. Thus, the finding of no severely depressed respondents at the three-year follow-up may be more a consequence of those who were lost from the study, than a reflection of total resolution of severe depressed states. The mean CES-D score for the group that completed the study was 13.3 at discharge while the mean for the group that was lost to follow-up was 20.2 at discharge, indicating that those lost to follow-up were on average more depressed than the continuing group. The difference is not significant.

Because of the small sample size CES-D scores were categorised as depressed (scores over 20.5) and those below not depressed and change over time considered using the repeated measures methods as described in the Methodology Chapter. Averages are described as medians and ranges rather than means and standard deviations.

There was a significant trend over time in depression (F3,104 = 3.68, p = 0.014). As can be seen from the Figure 9.10 and 9.11 the trend was for depression levels to increase immediately following discharge from hospital but significantly decreased by 36 months post discharge.

Figure 9.10: CES-D Scores Over Time CES-D Score

Discharge (n = 48) 10.5 (1.0 - 53.0) 6 Months (n = 44) 15.0 (1.0 - 47.0) 12 Months (n = 40) 13.0 (1.0 - 47.0) 24 Months (n = 35) 15.0 (1.0 - 38.0) 36 Months (n = 33) 7.0 (1.0 - 28.0)

(a) overall test for trend p = 0.014 (b) p<0.05 for comparison against 6 month score

(Minimum and maximum in brackets)

Time 3 Time 4 Time 5

cf cf cf

time 2 (baseline) time 2 (baseline) time 2 (baseline)

p = 0.766 p = 0.364 p = 0.003

217

Figure 9.11: Trend of Median CES-D Depression Scores Over Time.

Depression over time Median (min,max)
60 50

CES-D Depression Score

40

30

20

10 0 0 6 12 24 36

Months of follow-up

The transition from the relatively protected environment of the hospital to community living can present many challenges and unknowns for the person with an acquired disability as described in the findings above. For example many respondents were discharged to homes that were not accessible and without adequate mobility aids. The consequences of these factors as well as the emotional challenges of the adjustment from hospital to community may be a contributing factor to the increased depression following discharge. Depression may resolve as challenges are overcome and skill levels increase to facilitate greater independence. This is another example of the complex interactions between the various life domains under investigation.

Life Satisfaction Scales The Life Satisfaction Scale developed by Krause and Crewe (Krause, 1992a, 1992c; Krause & Dawis, 1992) as a subscale of the Life Situation Questionnaire (LSQ) for use with people with spinal cord injury was used to measure life satisfaction in the study. This scale is described more fully in Chapter Four and in Appendix One. It consists of two sub scales, General Satisfaction and Economic Satisfaction. Respondents were asked to rate their satisfaction with various aspects of their life on a Likert type scale from one to five, with one being very satisfied and five being very dissatisfied. General Satisfaction scores ranged from 8 to 45 with 8 indicating the highest possible level of general

218

satisfaction (lower scores represent greater satisfaction). Overall the respondents reported a high level of satisfaction with their quality of life on the General Satisfaction Scale at all points of measurement. See Figure 9.12.

As can be seen from the Figure 9.12 below, the highest levels of satisfaction are reported in the areas of family relationships, general health, the amount of control over life and social life. The area of most concern was identified as sex life. Life opportunities, recreational adjustment, and emotional adjustment were identified as only minor problems.

Table 9.12: Mean Scores for General Satisfaction Over Time

6 Months Post-Discharge (n = 44) Social Life 2.41 (1.34) 12 Months Post-Discharge (n = 40) 2.25 (1.25) 24 Months Post-Discharge (n = 35) 2.40 (1.22) 36 Months Post-Discharge (n = 33) 2.21 (1.34)

Sex Life

3.68 (1.38)

3.70 (1.31)

3.83 (1.40)

3.49 (1.44)

General Health

2.27 (1.28)

2.23 (1.25)

2.23 (1.29)

2.00 (1.06)

Family Relationships

1.98 (1.13)

1.88 (1.22)

1.86 (1.24)

1.58 (0.94)

Life Opportunities

2.66 (1.26)

2.73 (1.26)

3.14 (1.35)

2.64 (1.37)

Recreational Opportunities

2.86 (1.39)

2.78 (1.44)

2.60 (1.40)

2.21 (1.34)

Emotional Adjustment Amount of Control Over Your Life General Satisfaction

Standard Deviations are shown in brackets

2.50 (1.30)

2.32 (1.39)

2.20 (1.23)

1.94 (1.20)

2.36 (1.57)

2.10 (1.34)

2.37 (1.48)

2.27 (1.35)

20.70 (7.44)

20.15 (7.59)

20.54 (6.75)

17.39 (5.62)

Lower scores indicate greater General Satisfaction

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In the area of Economic Satisfaction (Figure 9.13), the sample overall expressed a fairly neutral position in relation to both satisfaction with their financial means and their employment situations.

Figure 9.13: Mean Scores for Economic Satisfaction Over Time

6 Months Post-Discharge Financial Means Employment Economic Satisfaction 2.95 (1.46) 2.84 (1.51) 5.80 (2.64) 12 Months Post-Discharge 2.93 (1.49) 2.68 (1.46) 5.25 (2.48) 24 Months Post-Discharge 3.09 (1.34) 2.63 (1.42) 5.71 (2.33) 36 Months Post-Discharge 2.88 (1.39) 2.73 (1.46) 5.61 (2.57)

Standard Deviations are shown in brackets

Lower scores indicate greater Economic Satisfaction

The SPSS Repeated Measures techniques were applied to consider change in General Satisfaction over time (See Figures 9.14 and 9.15). This series of variables was approximately Normally distributed by the criteria outlined in Chapter Four. There was a significant trend over time in satisfaction scores (F3,104 = 3.35, p = 0.022). General life satisfaction remained relatively stable over the first two years but significantly improved by the third year post discharge from hospital.

Figure 9.14: General Satisfaction Scores Over Time

95% CONFIDENCE INTERVAL Time 6 Months 12 Months 24 Months 36 Months Mean 20.679 20.604 20.913 18.358 Std. Error .567 .619 .678 .701 Lower Bound 19.555 19.376 19.569 16.968 Upper Bound 21.802 21.831 22.256 19.748

(a) overall test for trend p = 0.022 (b) p < 0.05

Time 3 Time 4 Time 5

cf cf cf

time 2 (baseline) time 2 (baseline) time 2 (baseline)

p = 0.929 p = 0.792 p = 0.012

220

Figure 9.15: Trend of Mean General Satisfaction Scores Over Time

Life satisfaction over time Mean (95% CI)
23 22 21

Life satisfaction score

20 19 18 17 16 6 12 24 36

Months of follow-up

Lower scores indicate greater General Satisfaction

Life Problems The Life Problems Scale is another subscale of the LSQ (Krause & Crewe, 1990). It consists of a bank of 16 items that ask each respondent to indicate on a 5-point Likerttype scale the degree to which they experienced problems with various aspects of their life. Life Problems are presented as a single scale, reporting mean scores for each item and the group mean for totalled scores for each point of measurement. Mean scores for individual items ranged from one to five, and total Life Problem scores range from 13 to 65 with higher scores indicating more life problems.

Surprisingly, this population did not report a great concern about troublesome or problem areas in their lives. Scores for the Life Problems Scale are presented in Figure 9.16.

Problems related to access and pain were the problem areas reported by the highest percentage of people, with issues related to income also being reported as problematic. Family problems, difficulty making new friends and health problems were the areas of least reported problems.

221

As can be seen from Figure 9.16 the group of respondents in the study reported slightly more problems than the respondents in the Minnesota Longitudinal Study (Krause, 1998f; Krause & Crewe, 1990). The respondents in the Minnesota studies reported were an average of 9.8 and 14 years post injury. This may suggest that problems are perceived to be less of an issue as time since injury increases or there may be some cultural or environmental differences between the Australian and American groups. Pain and access were the problem areas reported to be greatest concern to both groups. Income was also reported to be problematic by the US respondents. This may suggest some universality in the areas of concern to people with spinal cord injury. Figure 9.16: Problems of Life (Means)
Minnesota Study 6 Months (n = 44) 12 Months (n = 40) 24 Months (n = 35) 36 Months (n = 33)
(Krause, 1998f)* (Krause & Crewe, 1990)**

Pain Loneliness Control Over Life

Difficulty Making New Friends

3.1 (1.35) 2.18 (1.28) 2.36 (1.57) 2.05 (1.26) 2.86 (1.56) 2.55 (1.34) 2.02 (1.47) 2.30 (1.50) 2.20 (1.19) 2.16 (1.31) 1.89 (1.13) 2.82 (1.47) 2.20 (1.39) 33.75 (11.73)

2.68 (1.31) 2.10 (1.19) 2.10 (1.34) 1.83 (1.20) 2.55 (1.55) 2.32 (1.46) 2.18 (1.50) 2.10 (1.48) 2.07 (1.19) 2.12 (1.42) 1.63 (1.05) 3.0 (1.47) 2.20 (1.52) 32.03 (12.01)

2.60 (1.38) 2.43 (1.29) 2.37 (1.48) 2.97 (1.25) 2.94 (1.57) 2.37 (1.35) 2.20 (1.45) 2.40 (1.54) 2.11 (1.18) 2.06 (1.21) 1.77 (109) 3.09 ( 1.38) 2.40 (1.38) 34.20 (11.10)

2.64 (1.65) 2.12 (1.32) 2.27 (1.35) 1.52 (0.91) 2.55 (1.48) 2.06 (1.30) 2.09 (1.49) 2.39 (1.58) 2.00 (1.17) 1.91 (1.07) 1.64 (1.03) 3.0 (1.48) 1.91 (1.10) 31.46(10.00)

3.06 2.17 2.41 1.79 2.82 2.31 1.74 2.30 2.34 2.31 1.94 2.39 2.46 28.30

2.37 1.84 1.98 1.53 2.63 2.12 1.66 2.11 2.32 1.84 1.63 2.32
Not Reported Unable to Calculate

Lack of Income Boredom Transport Dependency Health Problems Depression Family Conflicts Access Stress Mean Total Score

Standard Deviations are shown in brackets * N = 355 Mean time since injury = 9.8 years (Caucasian SCI sample) ** N = 347 Mean time since injury = 14 years

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Self-Rated Adjustment The Self-Rated Adjustment subscale of the LSQ (Crewe & Krause, 1988; Krause, 1991, 1992a; Krause & Crewe, 1987; Krause & Crewe, 1990; Krause & Crewe, 1991a) consists of two questions, which ask respondents to rate their overall adjustment to having a spinal cord injury on a scale of 1 10. One indicates the worst possible adjustment and 10 indicates the best possible adjustment. The first question asked respondents to rate their present adjustment and the second question asked them to predict their adjustment in five years time. Scores were summed to give a composite score of self-rated adjustment. There was no statistical evidence to suggest that mean self-rated adjustment differed significantly over time (F3, 104, = 1.04, p = 0.379). Present self-rated adjustment ranged from 6.6 to 7.6 and self-rated future adjustment ranged from 8.09 to 8.18 over the course of the study. Findings from the Minnesota Longitudinal Study ranged from 7.87 (nine years post injury) to 8.45 (21 years post injury) for self-rated present adjustment and from 8.23 to 8.72 (both more than 21 years post injury) for future adjustment (Krause, 1998b). Once again these finding may be suggestive that outlook on life improves with time. Causal factors were not identified.

Figure 9.17: Mean Self-Rated Adjustment Scores Over Time

Adjustment Present Adjustment Future Adjustment (Optimism) Total Adjustment Score 6 Months 6.64 (2.17) 8.09 (2.45) 14.72 (4.13) 12 Months 7.08 (2.33) 8.18 (2.35) 15.25 (4.34) 24 Months 7.43 (2.08) 8.17 (2.29) 15.89 (4.63) 36 Months 7.61 (1.71) 8.12 (2.06) 16.03 (4.27)

Standard Deviations are shown in brackets

As can be seen from the table above there was a remarkable stability of the self rated adjustment scores across time with a sustained trend of expected improvement in overall adjustment demonstrated also across time. Self-rated expectation of future adjustment may be interpreted as an indication of optimism about the future (or otherwise). There was no statistical evidence of changes in optimism over time based on this measure ( F3,104 = 0.25, p = 0.860). While the change over time was not statistically significant, the mean score of eight for future adjustment across all points of measurement was suggestive of 223

an overall optimistic outlook on life for the participants. The future adjustment scores were higher than the perceived present adjustment scores at each point of measurement and remained stable at eight over the whole three-year period. The trend was that of a relatively optimistic outlook on life and an expectation that adjustment would continue to improve.

Psychological Outcome Trends Determinants of clinical levels of depression were also considered. For these analyses, depression was defined as a categorical variable where respondents scoring CES-D over 20.5 were considered depressed, and those below not depressed. There were insufficient numbers of respondents for meaningful analysis to consider the four subgroups as defined in Chapter Four using the recommended CES-D cut-offs (Radloff, 1977). Repeated measures logistic regression was unavailable in SPSS, so these analyses were performed using the LOGISTIC procedure in the SUDAAN statistical package version 7.0. A generalised estimating equations approach was used for these models, and all available data utilised, including those on partially complete records (Shah et al., 1996)

Thus depression was dichotomised as depressed (CES-D scores > 20.5) and not depressed (CES-D scores to 20.5). Repeated measures logistic regression models were fitted to determine the independent contribution to variation in depression by age, living arrangements, employment status, self-rated adjustment, future optimism, presence of pressure sores, and degree of disability (defined as requiring personal care assistance). Results are expressed as odds of being depressed in a category of an independent variable relative to the nominated referent category. An odds ratio of 1.0 means there is no association difference in the odds of depression between the two levels of the independent variable being compared. Odds ratios greater than 1.0 mean the odds of depression is higher in the level of independent variable being compared to the referent level. Odds ratios of less than 1.0 mean that the odds of depression is lower in the level of independent variable being considered to the referent level. Odds ratios of less than 0.5 or greater than 2.0 are worthy of reporting irrespective of statistical significance. The

224

model fit below (Figure 9.18) is at the bounds of complexity; note the very wide confidence intervals and the very large odds ratios.

In this model of clinical levels of depression, two variables were determined to be statistically significant determinants, self-rated adjustment and pressure sores. Lower self-rated adjustment and the presence of pressure sores were both significant determinants of clinical levels of depression. Although not statistically significant at the prescribed level, there was some evidence (high odds ratios) that age is also a correlate of clinical levels of depression.

As can be observed from Table 9.18, depression was less of an issue for those who assessed their own adjustment to be high. Intuitively this would make sense. Those who felt that they were coping well would be expected to be less depressed. However those who experience more pressure sores were significantly more depressed. This is an example of the interactions between the health related life domains and the psychosocial domains. As discussed earlier in this chapter causal links are difficult to establish but it seems likely that the interactions occur in both directions. That is depression may contribute to neglect of physical care which in turn may contribute to pressure sores or conversely the occurrence of a pressure sore and its physical and social consequences may contribute to a depressive reaction. Although not reaching the required level of significance there was some evidence that depression was less of a problem in the younger respondents. This finding may be somewhat influenced by the age distribution of the sample with younger age groups being over represented.

225

Table 9.18: Determinants of Depression

VARIABLE ODDS RATIO 95% CONFIDENCE INTERVAL AGE-GROUP 16-19 20-29 30-39 40+ 7.69 4.22 4.18 1.00 0.70, 84.05 0.69, 25.96 0.55, 31.80 (referent) 0.235 SIGNIFICANCE

LIVING ARRANGEMENTS

At home Other

0.91 1.00

0.22, 3.78 (referent)

0.896

EMPLOYED

No Yes 11 12-16 17-18 19+ 6 7-9 10+

0.56 1.00

0.17, 1.85 (referent)

0.330

SELF-RATED ADJUSTMENT

131.51 50.19 2.86 1.00

7.38, 2344.86 5.35, 470.74 0.60, 13.62 (referent)

0.002

FUTURE OPTIMISM

0.51 0.15 1.00

0.04, 7.05 0.02, 1.23 (referent)

0.111

PRESSURE SORES

No Yes

0.11 1.00

0.03, 0.47 (referent)

0.002

PCA (LEVEL OF DISABILITY)

No Yes

1.78 1.00

0.60, 5.28 (referent)

0.289

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SUMMARY This chapter has presented and discussed the quantitative data from the study. Overall a picture has been emerging from the data of a group of individuals who sustained a spinal cord injury and their adjustment process. It has been shown that the process is complex and the outcome of many interacting variables. The interactions themselves are multidirectional as indicated in the model of adjustment presented in Chapter Six. The respondents who participated in the study used a variety of coping strategies and multiple factors including health, environmental, and psychosocial variables influenced these.

The data presented in this chapter indicates that overall this group of people with spinal cord injury is making a good adjustment to their injury and the resultant disabilities. The majority have experienced few medical complications. Some environmental barriers were an issue, including home and community access and the availability of mobility aids. However, depression was decreasing in the group. They reported a high level of life satisfaction and the percentage that had returned to paid employment was high. The process by which these adjustment outcomes were achieved was the interaction of the multidimensional array of factors presented in the previous chapters.

In Chapter Ten the findings of the study will be discussed and the implications for social work practice will be considered. The model of adjustment developed in Chapter Six will be expanded to consider points of intervention to facilitate successful adjustment.

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CHAPTER TEN DISCUSSION AND CONCLUSION

OVERVIEW The purpose of this study is to explore the way in which people react to and cope with the imposed conditions of a spinal cord injury. As outlined in Chapter One spinal cord injury is a severe, sudden onset injury which results in permanent paralysis and loss of physical function. The injured individual is usually dependent on a wheelchair for mobility and may require varying levels of personal care assistance with daily living. Medical treatment and rehabilitation following spinal cord injury typically requires a lengthy period of hospitalisation and rehabilitation. The disruption which occurs in every aspect of life, requires substantial adaptation to restore balance in the psychosocial, health related and environmental spheres of life. A variety of issues, risk factors and outcomes have been identified in contemporary research into adjustment following spinal cord injury.

As discussed in Chapter Three, both clinical experience and the literature confirm that the majority of people who sustain spinal cord injuries make a very good overall adjustment. However there are a number of indicators that the period of adjustment is lengthy and the majority of challenges are confronted in the first few years following injury. For example rates of depression are high in the first few years following spinal cord injury but reduce over time. Likewise suicide rates, marriage break down and hospital re-admissions resulting from self-neglect are high in the first three to five years following injury. Beyond the first three to five years, many indicators of adjustment return to rates equal to, or better than found in the general population. For example people who sustain spinal cord injury generally report a high quality of life in the longer term. The findings from existing research confirm that the first few years are the period when the majority of the transitions in the adjustment process occur. Consequently this is also the period of greatest risk of adjustment problems. 228

The current research and understanding of the adjustment process experienced by people with spinal cord injuries was examined in the literature reviewed. It is shown that little is understood about the factors which enhance or facilitate the adjustment process for the individual. The emerging literature on coping processes facilitates and informs this study by providing a theoretical understanding of the coping process. An ecological perspective of coping has been adopted in this study because this perspective accommodates the complex range of factors and interactions, which impact on adjustment following spinal cord injury, as outlined in Chapter Three and revealed in the data in Chapters Six, Seven Eight and Nine.

This is a study of 44 people who sustained spinal cord injuries utilising a longitudinal repeated measures design incorporating both qualitative and quantitative methodologies. The study design is the strength of the study because the questions being addressed in this study are largely questions of process. The interpretations of reality as held by people who experience spinal cord injury provide a rich source of data, which reveal valuable insights into the adjustment process, and allow different views to emerge. The data presented in this study provides a rich source of information about the adjustment process of the group studied and the adjustment outcomes achieved. From the qualitative data a comprehensive model of adjustment following spinal cord injury is derived and presented in Chapter Six. A number of indicators of adjustment outcomes across the psychosocial, health related and environmental life domains are presented in Chapter Nine.

SUMMARY OF FINDINGS It is established in Chapter Five that the respondents for the study are representative of the spinal cord injured populations both in Australia and overseas. They are largely young (55% under 30 years of age) and male (90%). Consistent with the age/life stage of the sample 53% were single at the time of sustaining a spinal cord injury. The educational background of the respondents was relatively low with almost 70% having 12 years or less of formal education.

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Substantial financial disadvantage resulted from the injuries sustained. Employment of the respondents dropped from 83% who were employed pre-injury to only 14% employed immediately following discharge from hospital. Almost half the respondents (46%) were fully dependent on government funded income support, with 70% of the respondents having an income of less than $400 per fortnight at the time of discharge from hospital. At three years post discharge from hospital almost 40% of the sample continued to report income of less than $400 per fortnight. Thirty five per cent of the sample lived in rural or remote areas, characterised by limited access to medical or other support services. Sixtyone per cent of the respondents sustained quadriplegia level injuries, while 39% sustained paraplegia level injuries. Road trauma was the major cause of injury accounting for 41% of the injuries sustained by the respondents.

The findings confirm that the respondents suffered substantial socio-economic disadvantage as a result of the injuries sustained. The demographics of the group suggest that this is a group of largely young males with their lives still before them. The severity of their disability suggests a number of concerns related to their social situations, including educational/vocational issues, health problems, quality of life and relationship issues as well as psychological adjustment concerns related to the traumatic nature and sudden onset of their injuries.

These concerns were confirmed and reflected in the qualitative data presented in Chapters Six, Seven and Eight. Emerging from the qualitative data, a model of adjustment, grounded in the ecological perspective of coping, is proposed. The model is further developed in this chapter and implications for practice are considered. From the qualitative data the disruption in the lives of the respondents was identified as occurring in a variety of life domains including: the physical assault on the body resulting in paralysis, loss of physical capacity, loss of control, loss of dignity, loss of familial and social roles and emotional disturbance especially evidenced by depression and suicidal ideation. When disruption occurs, the individual engages in coping responses to restore the balance in their life or to moderate the disruption. A variety of coping responses were

230

also identified from the data. It is recognised that the coping strategies utilised by the respondents are not necessarily an exhaustive inventory of coping responses to spinal cord injury. The range of possible coping responses is conceivably quite vast and could be unique to the individual. However a number of common coping responses were identified and provide insight into the coping process as experienced by this group of respondents.

From a theoretical perspective it is known that the coping response is influenced by the individuals' personality, past life experiences, learned ways of coping, intellectual ability, educational background, physical and mental health and fitness levels (see Chapter Three for a comprehensive discussion of theoretical perspectives on coping). While it is beyond the scope of this study to explore these intra-personal resources, they are recognised from other research findings as factors that influence the adequacy of coping efforts and are therefore incorporated in the proposed comprehensive model of adjustment (Costa Jr et al., 1996; Cox & Ferguson, 1991; Craig et al., 1990; Folkman, 1992; Hammell, 1992; Hancock, Craig, Tennant, & Chang, 1993; Janoff-Bulman, 1992; Janoff-Bulman & Timko, 1987; Jochheim, 1983; Jordan, Wellborn, Kovnick, & Saltzstein, 1991).

The quantitative data presented in Chapter Nine describes the adjustment outcomes and achievements of the respondents in the health related, environmental and psychosocial life spheres. The findings establish that the respondents overall were making a good adjustment to their injuries and the resultant life changes. There was a decreasing need for assistance with daily living activities, indicating improved physical skills, greater confidence, and increased independence. The majority of the respondents were relatively healthy requiring minimal medical intervention. However there was a group of up to 30% of respondents who required multiple medical interventions including consultations with general medical practitioners, hospital admissions and interventions related to pressure sore management. A variety of environmental factors were identified as impacting on the adjustment process.

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Forty per cent of the respondents returned to the parental home following discharge from hospital but almost half of those living in the parents' home had moved into more independent living arrangements by the conclusion of the study, three years later. More than a third of the respondents faced challenges and barriers related to access in their homes and the supply of mobility aids following discharge from hospital. Approximately 75% of respondents had ongoing problems related to equipment supply or maintenance and 20% were still living in housing that was not fully wheelchair accessible at three years post discharge from hospital. The environmental barriers confronting this group of individuals with spinal cord injury were substantial.

One would expect that the financial and other environmental barriers would impact on the health and psychosocial outcomes of the respondents. However this was not entirely substantiated by the study. Despite the obstacles faced, the respondents demonstrated an ability to "get on with life". They pursued further study (33%) and re-entered the workforce (52%). There is evidence that while many respondents (49%) experienced depression immediately following discharge from hospital the incidence of depression significantly declined by the third-year follow-up period. Overall the respondents reported a high quality of life and rated the problems they experienced as low. They perceived their adjustment to having a spinal cord injury as high on a scale of one to ten and indicated that they expected their adjustment to be higher in the future than the present. Two variables were identified as being significant determinants of depression. Lower self-rated adjustment and the presence of one or more pressure sores were both significant determinants of depression. There was also some evidence (high odds ratio but not at the statistically significant level) that being younger at the time of injury may also be related to depression. This finding is at odds with some other research findings and requires further investigation. It may be related to the fact that the sample was biased towards younger respondents, which is representative of the injury trends for spinal cord injury.

Taken together, the findings indicate that overall the respondents have made a good adjustment to the disruption caused in their lives by sustaining a spinal cord injury.

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However a number of challenges were identified in the both the qualitative and the quantitative data. The respondents utilised a variety of coping strategies to overcome the barriers and challenges they confronted. The effectiveness of the coping efforts of the respondents is mediated by a variety of health and environmental factors in interaction with the intra-personal resources of the individual as discussed below. Thus the main findings from the study highlight the complexity of the adjustment process and the range of interacting factors that impact on the process. The findings further highlight the variety of individual responses to spinal cord injury and the unique influence of the individuals social and physical environments. There is therefore no right way to adjust to a spinal cord injury. Adjustment is influenced by a variety of uniquely individual factors. Interventions must focus on the strengths of the individual, social networks, problem solving, environmental issues and social change.

IMPLICATIONS FOR INTERVENTION The findings of the study raise many issues and reveal multiple points of potential intervention to better facilitate the adjustment process. In the model of adjustment to spinal cord injury proposed in Chapter Six the event and consequences of sustaining a spinal cord injury are seen to cause disruption to the state of equilibrium (i.e. adjustment) in the life of the injured individual. The data emphasises the complexity and range of adjustment responses. The model and the data reveal considerable potential for creative social work practice, with significant implications for other rehabilitation professionals. The need to recognise and respect the individual, their intra-personal differences, and their social and environmental backgrounds is evident from the data presented. It is important that interventions be directed at both the micro (individual) level and at the macro level (influencing social and cultural attitudes, policy, and programs).

The role of social work and other rehabilitation professionals in relation to people who have sustained spinal cord injuries has traditionally been focused on rehabilitation that helps the injured individual maximise physical independence and adjust psychologically to their disabilities. The focus has largely been on the individual and often based on an

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assumption of individual inadequacy or personal tragedy (Sapey & Hewitt, 1993). The data from this study demonstrates that it is vital that social workers and other rehabilitation professionals move beyond the traditional roles to adopt practices of empowerment based on a social model of disability. It is essential that macro level interventions which are targeted at rectifying the structural/societal problems and addressing the social, attitudinal and physical barriers in the environment are incorporated in clinical practice (d'Aboville, 1993;Oliver, 1993).

In Figure 10.1 the model of adjustment developed in Chapter Six is revised and represented below. The revised model indicates the potential for social work practice and intervention on multiple levels.

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Figure 10.1: Model Of Adjustment To Spinal Cord Injury Showing Rehabilitation and Social Work Interventions

SUSTAINING A SPINAL CORD INJURY

INTRA-PERSON RESOURCES Personality Life Experiences Intelligence Education Health Physical Fitness

Counselling Relationship Counselling Sexuality Counselling Family Therapy Grief and Loss

Crisis Intervention

DISRUPTION TO LIFE Physical Trauma/Paralysis Loss of Physical Capacity Loss of Control Loss of Dignity Loss of Family Roles Loss of Social Roles Emotional Disequilibrium

STRATEGIES TO MANAGE DISRUPTION TO LIFE Hope Determination Keep busy Reconstruction of Meaning Constructing Benefit from the Experience Making Downward Comparisons Why Me? Acceptance Religious Beliefs Engaging in Social Action Helping Others Make the World a Better Place Regaining a Sense of Control Over Life Information Seeking Setting Goals Reframing/Maintain a Positive Attitude

Outcome/Consequences Quality of Life Emotional Response Vocational Outcome Life Satisfaction Independence Control Over Life

Advocacy Co-ordination Consultation Program Development Policy Development

FACTORS THAT INTERACT OR IMPACT ON THE EFFECTIVENESS OF THE COPING STRATEGIES Family Support Vocational Resources Peer Support Access and Mobility Friends Transport Community Supports Health/Medical Issues Financial Resources

Advice Referral Information Education

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DISRUPTION TO LIFE From the data obtained from the study seven key areas of disruption were identified in the lives of the respondents. These included the physical trauma and experience of paralysis, the loss of physical capacity, loss of control (both of physical function and the decisions that affect one's life), loss of dignity, loss of family roles, loss of social roles, and emotional disequilibrium. The disruption results in a crisis situation in the health related, psychosocial and environmental spheres of life.

The disruption to life can be conceptualised as a stone thrown onto a lake of water. The disruption of the water's surface continues to spread across the lake in ever widening circles until the entire lake surface has been disturbed. In the case of spinal cord injury it may be more like a large boulder dropping from a high cliff into the lake. The disturbance in the water spreads in much the same fashion but the disturbance is much more turbulent and the effect decreases as it spreads across the lake. When a person sustains a spinal cord injury the disturbance caused has an impact on every aspect of the individual's life. The impact continues to spread beyond the individual, like the waves across the lake, and also impacts on their family and social networks. Moving beyond the analogy of the ripples in the lake there is an interacting affect between the disruption and the environment, the intra-personal resources of the individual and the coping strategies utilised. This crisis is the first point of possible intervention for the social worker. Immediately following the injury several potential crises are confronted.

Loss of Physical Capacity As portrayed in the qualitative data in Chapter Six the loss of physical capacity contributes to the sense of hopelessness and helplessness as well as contributing to the perception of other losses. The skills of the rehabilitation team help the injured individual to maximise the use of any remaining physical function. The injured individual also learns alternative ways of managing bodily functions such as bladder and bowel management. While the loss of physical capacity may be permanent the injured individual needs to maintain hope and 235

motivation to benefit optimally from the rehabilitation program. The social worker can assist by helping the person to see possibilities, maintain self-esteem, set goals and develop problem-solving skills.

The loss of physical capacity occurs in the context of one's personal and social worlds. It is important to understand the perspective of the client to assist them to find meaning and hope, which form the essence of motivation. Motivation is a key factor in rehabilitation and adjustment success. While strengthening and physical skill training are the domains of physiotherapy and occupational therapy, the social worker has an important role in assisting the client to find motivation and purpose to pursue the physical goals necessary to live with a spinal cord injury. These aspects of interdisciplinary teamwork are important so that a consistent and integrated program is able to be co-ordinated. The client's role in defining goals and defining meaning is the key. In this sense the hospital staff (physiotherapy, occupational therapists, social workers, doctors and nurses) are resources to be used by the client. Hospital or rehabilitation staff have technical knowledge that can be utilised by the person with spinal cord injury to regain control over their lives, gain physical skills and maintain health. However, it is only within the context of the clients' world and the meanings they attribute to rehabilitation goals that mastery is achieved.

Loss of Control There is a very real sense in which control over ones life is lost in the early stages immediately following spinal cord injury. As evidenced in the data presented in Chapter Six there is a struggle between the need to receive care and the need to regain control. Independence may no longer be defined as what one can physically do for one's self unaided, but may be related to the quality of control one exercises over the decisions which affect one's life. It is important that the individual regains a sense of control over the decisions affecting their lives as soon as possible. Research shows that people who perceive that they are in control have better long-term outcomes (Rintala & Willems, 1987; Schultz & Decker, 1985).

The social worker can work with the patient and family to help them regain control. Physical therapy will assist with gaining the necessary functional skills but more than physical ability 236

is required to feel in control. One needs to be able to be assertive and to have the confidence to make decisions. The confidence to make decisions is linked to having information, understanding and knowledge about ones condition.

The data reveals that there is a sense of vulnerability and powerlessness that may be compounded by the hospital environment. The data further suggests that at times, there can be conflict between hospital staff and respondents, as respondents struggle to re-establish control over their lives. It is important that staff in a spinal injuries unit understand the client's need to regain independence and exercise control. It is important to listen to the client and understand their perception of the interactions that occur in the hospital.

Hospitals can be very busy places especially in a climate of economic rationalism and staff shortages. At times this results in practices which are not optimal from the clients perspective. Because staff are working under pressure and the administrative demands are ever increasing, practices develop for the convenience and efficiency of the hospital with little respect for the rights or unique needs of the individual. Not being able to sleep-in on the weekends (ID30) even though there is no formal therapy or medical reason why the ward routine must be maintained on the weekend is an example of such a practice. Such practices contribute to the sense of powerlessness and are further exacerbated by the feeling of being defenceless which encourages submissive or passive roles. The issue of staff-patient power differentials is seldom recognised by staff but was perceived in very real sense by the respondents. The data even suggests that at times respondents anticipated negative consequences or the threat of retaliation if a submissive role was not adopted (ID9).

It is important that all staff working in rehabilitation and spinal injuries units understand the importance of fostering real independence and not just compliance. The social worker can assist other staff members to understand the client's perspective and may even at times need to act as a mediator. Both education and supervision of staff are crucial to successfully implement these practices.

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Loss of Dignity Loss of dignity and a sense of depersonalisation were aptly described by the respondents. Loss of dignity was attributed to structural issues related to the design of the treatment and rehabilitation areas, lack of sensitivity on the part of some staff and ward routines. Respondents indicated that at times they felt that their personal identity was lost. There was a sense that respect for them as individuals became blurred or lost while in hospital. The ability to maintain dignity is important to preserve self-esteem and confidence.

There may be a number of factors that contribute to this loss of dignity. As described by Janoff-Bulman (1985; 1992) people in general attribute meaning to events based on a core set of assumptions about how the world operates (See Chapter Three for a more detailed discussion). Based on these assumptions people see the world as a place where events that happen have meaning and do not simply occur at random. From this perspective personal deservingness determines the events that affect people. Thus one of the common core beliefs about the world is that good things happen to good people who engage in appropriate precautionary behaviours and bad things happen to bad people who engage in inappropriate or careless behaviours. That is, people get what they deserve out of life. Common assumptions such as these allow health professions to make sense out of the world of trauma, in which they work, maintain their own mental health and avoid burnout. Consistent with the common core values health professionals can adopt an almost subconscious belief that a person who sustains a spinal cord injury must have done something to deserve what has happened. When excessive alcohol or drug use, criminal, or foolhardy behaviour have contributed to the accident, or where a patient is angry, verbally abusive or aggressive these assumptions are readily maintained. While serving to protect the health professional who is repeatedly exposed to trauma, these assumptions may also contribute to the depersonalisation described by respondents.

Further contributing to the process described above is the fact that patients are virtually never seen in their social contexts. Patients in spinal injuries units are physically damaged, emotionally distressed, and devoid of usual social supports. They are never seen in their own natural environment where they may have functioned as effective and competent individuals. Thus respect for the individual may be diminished. 238

Compounding the above factors is the stress of working in a demanding, resource scarce environment. At times a herd mentality can pervade. All patients start to look the same. Compliance makes it more efficient to manage the tasks of a rehabilitation service.

While this is a generalisation, many of the features described above do contribute to the depersonalisation described by the respondents. The majority of staff working on a spinal injuries unit strive to respect the individual and their rights, however these basic values some times seem to get lost in the delivery of rehabilitation services.

Structural issues in design of treatment and rehabilitation areas in the spinal injuries unit may create problems with maintaining sensitivity to privacy. Given the nature of the many sensitive issues addressed, such as sexuality, bowel and bladder management, it is important that the injured person is able to maintain dignity. The maintenance of dignity is essential to sustain self-esteem and confidence.

Respect for individual differences, the intrinsic value of each person, the need for privacy, confidentiality and respect, are core values universally endorsed by rehabilitation services and the social work profession. As demonstrated in the data, these core values are in reality often jeopardised in the day-to-day life of a spinal injuries unit. They need to become entrenched cultural values that are the reality of the rehabilitation setting to be meaningful. Social workers have a role in challenging practices where these core values are compromised.

Loss of Social and Familial Roles The loss or changed nature of social and familial roles further results in disruption to life adjustment as conveyed by the respondents in Chapter Six. The loss of meaningful roles can contribute to feeling devalued. One respondent (ID38) described it as feeling like being on the sidelines of life and not being a full participant. There is an aspect of loss and grieving for valued roles and activities such as recreational roles with friends. As will be discussed in more detail below respondents used a variety of strategies to deal with these losses and

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redefine valued roles. As physical strength and functional skills improved, some roles were re-established.

It is important that the individual's voice about the importance of roles is heard. It is important that they are able to grieve any losses, which are significant, but at the same time find alternative means of fulfilling roles, maintaining social relationships or developing new and meaningful interests. All members of the rehabilitation team can support injured individuals as they seek to re-establish meaningful roles. The support of family and friends is also very important.

Emotional Disequilibrium Depression is a common reaction following spinal cord injury as demonstrated in both the qualitative and the quantitative data. However there is also evidence that depression resolves over time in the majority of cases. Other emotional responses described in the data include anxiety, fear, confusion and anger. The traumatic nature of the injuries sustained and the crisis precipitated cause the coping resources of the individual to be depleted. People who have coped well in life and never before experienced depression or other severe emotional responses may experience substantial emotional disequilibrium following spinal cord injury. It is important that appropriate screening and treatment processes are in place in primary rehabilitation settings. Emotional support is important for sad periods. Informal supports can be mobilised, since in most grief situations such as following a death the grieving process is facilitated without formal supports or counselling. This has implications for the support, education and training offered to families. In some cases formal counselling or psychiatric intervention may be required. Appropriate screening processes are needed which are not obtrusive but facilitate the formal interventions if required.

Clients often need to be reassured that what they are experiencing is a normal reaction to the traumatic nature of what is happening to them. They need to be empowered to regain control and see possibilities. Hope once again is very important.

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Life events in other spheres of life do not simply cease once a person sustains a spinal cord injury. Respondents experienced other significant life events during the course of the study, including marriage break-up (ID26, 33 & 48), divorce (ID12), death of a spouse (ID4), and a child who was diagnosed with a disability (ID1). In the early stages following spinal cord injury coping resources are depleted and such life events can cause a crisis and emotional response which is not characteristic of the individual's coping ability. They may require additional supports and interventions during this phase. As coping and confidence grow, as time passes since injury, the ability to cope with life crises becomes more stable again.

As demonstrated in the data suicidal ideations are common following spinal cord injury and reflect the associated loss of hope and meaning in life. I have heard many clients say they had always thought they would not want to live if they had to be in a wheelchair. In part this is a cultural norm related to disability and body image. People with disabilities are devalued in western society and this is reflected in the statements made by clients. However if meaning can be re-established in life and motivation maintained these cultural norms are often redefined and as seen in Chapter Seven, life is often perceived as being better as a result of what has happened to them.

Suicide prevention and screening is important particularly in the early stages. Pain can be another contributing problem. In the problems of life reported by respondents ongoing pain was the most common problem experienced. In my experience chronic pain is a common feature for many people with spinal cord injury who commit suicide. Ongoing pain can be very wearing and if there is no hope of resolution the client can lose all hope that life is worth living. Death may seem to be the only avenue of escape. Chronic pain was a feature in one of the two cases of suicide reported in this study. Pain treatment following spinal cord injury is problematic and many people live with chronic pain (Anke, Stenehjem, & Stanghelle, 1995; Balazy, 1992; Mariano, 1992; Richards, 1992; Segatore, 1994; Siddall, Taylor, & Cousins, 1995). Where pain can not be effectively treated or resolved, effective pain management strategies need to be implemented. To date no comprehensive multidisciplinary pain management services for people with spinal cord injury are available in Queensland.

Further contributing to the loss of hope may be the restriction of opportunities and structural problems encountered in society and the environment. Loss of financial security, vocational 241

opportunities and restricted access are all common factors which interact with the disruptive effect of the spinal cord injury to contribute to the compounding loss of hope. If the coping strategies of the individual are not effective in restoring hope, the risk of suicide is increased. The risk may further increase if psychosocial problems or emotional disequilbrium are ongoing. For example both cases of suicide in the study occurred after the client was discharged from hospital. In both cases there were a number of indicators of risk. While the need to foster hope and find a reason for living are important, the health, pain, structural and social problems encountered must also be effectively addressed. This implies interventions both on the micro (individual) and macro (societal) levels.

STRATEGIES TO MANAGE DISRUPTION TO LIFE Emerging from and identified in the qualitative data presented in Chapter Seven were a variety of coping strategies used by the respondents to cope with the disruptions to life caused by sustaining a spinal cord injury. Most respondents used multiple coping strategies concurrently. The strategies described by the respondents were largely cognitive-behavioural strategies. The role of hope was important in the coping process for 73% of the respondents. Other strategies included cognitive strategies such as maintaining a determination, reconstruction of meaning attached to the injury and its consequences, reframing to maintain a positive attitude, and behavioural strategies such as keeping busy, information seeking and goal setting.

It was noted that the role of hope changed over the progression of the study. Initially hope related to full recovery but as time since injury progressed hope became more focused on attaining a life satisfaction. Hope for a recovery was maintained by some respondents, even in the face of increasing evidence to the contrary.

Determination was also identified as an important factor in the adjustment process. Forty eight per cent of respondents indicated that they thought determination to keep going in the face of the challenges encountered had assisted them in the coping process. This determination was described in various forms but largely reflected cognitive coping strategies in the form of concentrating on positive aspects of life, making it happen (taking control) or

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adopting a can-do attitude to life. This sense of determination displayed by the respondents was strongly linked to the hope described above.

While the nature of spinal cord injury usually results in permanent disability this study clearly establishes that hope and determination which overcome feelings of defeat are able to be sustained despite the severity of the injury or permanent nature of the disability. In recognising the contribution of these factors to the coping process it is important that rehabilitation professionals support the injured person in the hope and determination that they are able to muster without interpreting these responses as being unrealistic or forms of dysfunctional denial. Both hope and determination can be supported without distorting the reality of the injury and its consequences. The importance of honest and frank information has already been discussed, but as has been portrayed in the data this can be done in a way that provides room for both hope and determination to be preserved.

In some ways rehabilitation professionals need to develop skills that are not unlike that of an elite sports coach. The realities of the situation need to be confronted but motivation to win must be encouraged. As I listened to the respondents saying things like "never give up, just keep going and find a way I was reminded of the Nike advertisement that flooded our television set in recent times Just Do It and it reminded me of the coaching approach that is unconsciously adopted in many rehabilitation centres throughout the world. Maybe the support of hope and determination that overcomes in the face of serious obstacles is the important factor underlying this approach.

Inherent in this suggestion is the concept that not everyone is a winner in sport. Likewise following spinal cord injury some face more struggles than others in the adjustment process. Hope and determination alone are obviously not enough to overcome the barriers and challenges confronted following a spinal cord injury. However hope and determination are important when coupled with social support, physical skill training and environmental manipulations that further support the adjustment process. Respondents who assessed their own adjustment to be high were less troubled by depression as discussed in Chapter Nine.

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Other cognitive/behavioural strategies utilised by the respondents included construing benefit from the experience, making downward comparisons to others less fortunate, engaging in social action, helping others, making the world a better place, finding answers to the why me questions, acceptance, religious beliefs, information seeking, goal setting, and reframing. While other cognitive/behavioural strategies may also be useful in coping with spinal cord injury and its consequences these were the most common strategies identified by the respondents in the study. The prevalence of these strategies and their effectiveness provides indicators for rehabilitation support and interventions to facilitate more effective coping for those who may experience difficulties.

Research indicates that cognitive-behavioural interventions are effective in producing clinically significant benefits in terms of psychosocial outcomes and well-being as well as assisting the acquisition of new coping skills to expand the coping repertoire (Craig et al., 1999; Craig, Hancock, & Chang, 1994; Craig et al., 1998b; Craig, Hancock et al., 1994a; Devins & Bink, 1996). Support of the cognitive behaviour strategies employed by the injured individual can be integrated in rehabilitation practices both formal (counselling and group work) and informal (communication between clients and staff).

FACTORS THAT INTERACT WITH OR IMPACT ON THE EFFECTIVENESS OF COPING STRATEGIES Social Support (Family, Disabled Peers, Friends and Community) Social support, including support from family, friends, other disabled peers and community support emerged in the data as a key factor that impacts on the adjustment process. Emotional support was most important immediately following injury but continued to be important throughout the course of the study. The respondents considered both emotional and instrumental support important. Some respondents also experienced tensions between receiving support and wanting to protect their loved ones from the full impact of their experience as reflected by the respondent (ID32) who felt it was easier to express her emotions to friends rather than her family because they tended to get too upset. 244

Family members may need assistance to overcome some of their own prejudices about disability and social roles. Several respondents reported conflict in re-establishing independent adult roles in the face of concerned and sometimes over-protective parents. Families need to also understand the need for independent decision making and the right of the injured family member to make decisions or even to fail at times. It is sometimes hard for parents especially to stand back and watch their adult child struggle (and sometimes suffer) to regain valued roles. The social worker has an active role to play in supporting the social support networks of the injured person and to help expand the range of options available to them.

These findings have implications for the way significant others are supported in this important role of providing support for their injured loved one. Family support both of a practical nature and emotional support are essential. Families also need education and knowledge about spinal cord injury and the prognosis of their injured family member to be able to function confidently and adequately.

Financial Resources The economic consequences on the individual who sustains a spinal cord injury can be devastating as indicated in the data. Loss of employment resulting in loss of income seriously restricts the range of choices available to the injured individual. As revealed in Chapter Six this can have an impact on the individuals self-esteem, lifestyle and life choices and these in turn can interact with other life spheres to compound the difficulties confronted in the adjustment process. For example not having financial resources to modify a vehicle to operate via hand controls may mean that vocational and recreational options are restricted. Not having financial resources to obtain an optimal lightweight wheel chair may significantly restrict independent mobility. Factors such as these compound to restrict life options. Loss of income may result in not being able to support ones family in the manner to which they are accustomed. This can contribute to relationship issues and once again impact on self-esteem. The data demonstrates the change in attitude and enhanced quality of life that was achieved as financial resources increased as respondents returned to work or received financial compensation for their injuries through the legal system. 245

It is important for rehabilitation professionals to recognise the negative impact of restricted financial resources on the adjustment process and the need to act as an advocate for the injured individual to obtain the necessary resources to maintain health and quality of life. The cost of living following spinal cord injury has been demonstrated to be substantially higher than the cost of living without a disability (Ditunno, 1997; Forrest & Gombas, 1995; Hamilton, Deutsch, Russell, Fiedler, & Granger, 1999; Johnson, Brooks, & Whiteneck, 1996; Johnston & Keith, 1983; Levi et al., 1996; Menter et al., 1991). Many of the increased costs are sustained in the first months or years following injury when the cost of getting established with accessible accommodation and adequate equipment to facilitate independence are encountered. Further impacting is the maze of bureaucratic and organisational processes to obtain resources and entitlements. For the newly injured individual this maze of rules, applications and assessments can be intimidating and overwhelming. Once again the importance of support, information and advocacy are crucial in facilitating the process. Respect for the needs of the individual and their unique set of needs is seldom catered for in the bureaucratic processes encountered. This means that rehabilitation professionals must be prepared to act as a strong advocate for the individual, especially when dealing with organisations who may be unfamiliar with the consequences of spinal cord injury.

Vocational Resources Consistent with other findings in this study vocational outcomes are an interaction between both the environmental resources available and the individuals coping and intra-personal resources as well as their health and medical state. Achieving employment enhances the financial resources available and in turn increases the options available to the individual. Meaningful and satisfying employment can also contribute to enhanced self-esteem and facilitate reintegration into community life. These factors combine to result in enhanced quality of life.

Several factors that facilitated return to work were identified in the data. These included support from friends, vocational rehabilitation services and support from previous employers. Each of these factors provide points of intervention which can be accessed to support the injured individual to return to employment. 246

Educational activities were pursued by a third (33%) of the respondents. Vocational counselling and financial support for educational activities may further contribute to the successful return to work of some people who sustain spinal cord injury.

Some respondents reported discrimination at the work place and some attitudes of vocational counsellors, which were not helpful. One respondent reported that his vocational counsellor had assessed his return to work potential as poor and therefore failed to recommend funding to assist him purchase aids to pursue studies. He found this experience particularly demeaning and felt that the counsellor held the belief that he was too disabled to work. This fuelled his determination to prove the vocational counsellor wrong and he persevered with his study and succeeded in gaining employment. This is an example of the interactions of factors. For this respondent the course of action was made excessively difficult by not having access to the support he required but his personality and coping strategies enabled him to succeed despite the obstacles he faced. However he did experience depression and anger at the injustice of the system (he knew other people with similar injuries who received generous support from the same agency and believed his lack of support was solely due to the value base of the vocational counsellor who was responsible for his case).

The potential to return to work is demonstrated by the employment outcome achieved by the respondents. However, increasingly, vocational services such as the Commonwealth Rehabilitation Service are being driven by market forces and profitability. The outcome of these practices is that those who may most benefit from vocational support may be least likely to be funded. This practice is a contradiction to equitable services and nondiscriminatory practice for those who sustain severe disabilities. The evidence from the employment outcomes achieved by this group of people with spinal cord injury challenges the common belief in our society that someone can be too disabled to work. This attitude should be consistently challenged, legally if necessary. As demonstrated by some respondents (e.g. ID43) discriminatory practices can be successfully challenged.

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Access, Mobility and Transport It is well documented that access in the home and the community, availability of adequate mobility aids and basic aids of daily living and a source of independent transport all have a strong link to the success of rehabilitation outcomes and quality of life achieved by people with spinal cord injury (Harrison & Kuric, 1989; Inman, 1999; O'Day & Corcoran, 1994; Tate et al., 1994) (DeJong et al., 1984; Forrest & Gombas, 1995; Richards et al., 1999; Tate et al., 1993). The cost of home modifications, equipment and vehicle modifications can be substantial. The cost of community access and wheelchair accessible public transport and subsidised purchase, supply and maintenance of specialised equipment also represent a substantial cost to the taxpayer or insurance provider.

However this study supports the findings of other researchers that the investment in accessible communities and provision of adequate equipment to facilitate independence does much to enhance the quality of life for people with spinal cord injuries. Those who have these basic needs met are able to more readily take up valued roles in families, communities and society. Economic constraints and social attitudes that devalue the role of people with disabilities place additional financial burdens on this group of people with a disability who already have substantially increased costs of living associated with their disability. Due to funding and budgetary constraints clients are often placed on waiting lists for the supply of essential equipment and assistance with home modifications. Financial assistance for vehicle modifications is extremely restricted as discussed in Chapter Nine. The consequence of this is that discharge from hospital may be delayed or a person may be discharged but forced to live without the equipment or access that is adequate for his/her needs (sometimes for many months). This may compromise their independence and correspondingly impact on their psychological well being and ongoing adjustment process.

It is essential that the importance of the timely supply of these needs is recognised and addressed at both an individual and policy level. The changes to the Motor Vehicle Act 1992, which compelled insurers to meet the cost of rehabilitation for those covered by Compulsory Third Party Insurance has made a dramatic difference to the quality of life for those injured in motor vehicle accidents. The changes to the Motor Vehicle Act did not impact on the respondents who participated in this study but is cited as an example of successful advocacy, 248

consultation, and lobby action to implement a legislative change that addresses the needs of people with disabilities in a more equitable and just manner. As a result of the legislative changes introduced people covered by Third Party Insurance are entitled to have rehabilitation costs met by the insurer in a timely manner. This change has been interpreted to include the supply of equipment, home modifications, payments for personal care, vehicle modifications and vocational support. Clinical experience and formal evaluation support the claims that these changes have had positive benefits in terms of enhanced quality of life and reduced rehabilitation costs resulting in economic benefits to the individual, healthcare provider, social services, and the insurer.

Health and Medical Issues As discussed in the presentation of the data and the literature review, health and medical problems associated with spinal cord injury can have a significant impact on the quality of life of the injured individual. The presence of pressure sores was found to be significantly associated with depression (Chapter Nine). Hospital admissions were reported for more than 30% of the respondents over the course of the study. Hospital admissions result in further disruption to life for the injured individual and may complicate the adjustment process. As discussed in Chapters Three and Six causal links are difficult to establish. Many medical complications associated with spinal cord injury are avoidable with proper care. However, it is bit like the old chicken and egg scenario: Which comes first? Do adjustment difficulties including depression contribute to the development of medical complications or does being unwell contribute to depression and despondency? These are questions which require further research to be adequately addressed.

However the data generated clearly establishes that medical complications impact on the adjustment process and psychological well-being of the individual. The respondents reported that health concerns restricted their social life, inhibited them accessing the community and resuming valued roles, contributed to loss of motivation and depression. Medical complications represented a severe intrusion into the lives of the respondents.

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Rehabilitation services for people with spinal cord injury have long struggled with questions related to the avoidance of medical complications. Medical science has made enormous advances in the management and prevention of medical complications following spinal cord injury. However it is acknowledged that both physical and psychological aspects of care are important (Brown, 1992; Trieschmann, 1988).

Education about the risk and techniques to manage medical complications is a key function of rehabilitation services. Education needs to be provided in a variety of forms given the various learning styles of individuals and the issues related to information retention discussed earlier in this chapter. Both information and practical skills need to be conveyed. Education equips the individual with spinal cord injury with the information and confidence to make informed decisions about their own care, respond appropriately when problems arise and to instruct carers where necessary. There is a growing body of evidence which supports the efficacy of patient education programs in facilitating the management of disabling conditions and improving psychosocial outcomes (Devins & Bink, 1996). Patient education programs have the potential to be both instructional as well as incorporating therapeutic aspects (such as cognitive-behavioural components) which enhance coping skills and address emotional components of health management. Educational programs can be further nurtured by supportive counselling on an individual basis as well as environmental interventions.

The new computer technologies provide a wealth of new opportunities to individualised education packages. Education needs to be provided on an ongoing basis as needed. Home advisory and outreach services has a strategic role to play in maintaining the health management skills of people with spinal cord injury.

Another issue, which arose from the data, related to the availability of health care services. Some services were provided in ways which undermined the individual's rights and control over his/her own life. For example one respondent reported that the community nurse was always telephoning his doctor in a way that he found controlling and intrusive. There were other examples of health care professionals, including doctors, who did not have adequate knowledge of the correct management of spinal cord injury related concerns including equipment, skin care or bowel and bladder management. Some respondents experienced deterioration in medical conditions as a result of poor health care support in the community. 250

This is further exacerbated by the large geographical catchment area served by the Brisbane Spinal Injuries Unit and the lack of support services in many rural and remote areas.

A culture of consultation and respect needs to be engendered among health care professionals and increased use made of new technologies such as teleconferencing and telehealth professional inservice educational programs. The skills to develop relevant programs both for consumers and health professions currently exist but the utilisation of these new technologies is hampered by the lack of funding. For example a recent telehealth promotion about skin care was unable to be accessed by some health professionals in north Queensland because of lack of funding to link in to the broadcast. This was despite the fact that they were currently dealing with a number of clients who were experiencing the very problems being addressed in the telehealth promotion. This is very short sighted by the funding bodies involved. Inadequate knowledge by health providers can and does contribute to further deterioration of the presenting condition necessitating hospital care. Thus the overall cost of care escalates and the psychosocial consequences to the individual are greater.

CRISIS INTERVENTIONS Spinal cord injury represents a substantial crisis for the injured individual and their family. One of the first steps in assisting the injured individual to restore balance is to address the crisis issues. The impact of addressing the immediate crisis is two fold. By addressing the practical problems such as income security and housing some of the stress can be mediated, releasing the injured individual to start to process some of the emotional issues confronting them. The social worker needs a detailed knowledge of the resources available to the client and the processes involved in accessing services. The social worker needs to know about emergency housing for families from outside the metropolitan area, travel assistance schemes, financial assistance, emergency aid, insurance entitlements, and legal implications. In extreme crisis people are often unable to process information adequately and may therefore be unable to make decisions or deal effectively with large organisations such as the social security system. The social worker needs to assess the ability of the individual to make decisions, provide information and at times assist with practical tasks such as applications, finding accommodation, arranging appointments and if necessary accompany the client to

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appointments to assist with administrative details. The role of the social worker is largely as an enabler and can include counselling, education, referral and support.

There is a tendency for social workers to consider many practical tasks as welfare duties and not part of the professional role of the social worker. However the practical aspects of social work practice do much to reduce stress and help empower the injured individual to begin the early process of re-establishing dignity, control, and maintaining valued family and social roles. Resolution of practical concerns contributes to the reduction of anxiety and depression and are therefore valued interventions.

The traumatic nature of the injuries sustained are characterised by fear, anxiety, confusion and an intense loss of control over one's life as described by the respondents themselves in Chapter Six. One respondent (ID31) described the experience as being like a "nightmare" that wouldn't go away. Interventions, which minimise these factors, are important in the recovery and adjustment process. It is important to normalise the emotions being experienced by the injured party. The experience of sustaining a spinal cord injury will be outside any prior life experience. The pain and medical procedures are unknown. The uncertainty of the future is extremely anxiety provoking. The patient needs to know that the fear, anxiety, and confusion that they are experiencing are a normal reaction to the abnormal situation in which they find themselves.

At times the fear, anxiety and grief reactions result in panic attacks, sleep disturbances, or depression. The social worker may work with other members of rehabilitation team to assist the individual to manage these reactions. This can involve a range of interventions including stress management techniques, relaxation therapy, or counselling. Psychiatric advice and intervention may be required.

As discussed in Chapter Seven information seeking was a coping strategy utilised to facilitate the resolution of fear, anxiety and confusion. Information is vital to regain control and restore mastery of life and the manner in which information is conveyed is very important in facilitating adjustment. The social worker can play an important role in assisting the individual to deal with the emotional response to the information provided. Emotional responses can vary from disbelief, to grief, to anger, to blame (of self or others), to asking 252

what if and even to passive acceptance. The social worker may provide emotional support, additional information, or counselling as required.

COUNSELLING At the individual and family levels of intervention there is a wide range of creative social work options available. As seen in Chapters Six and Nine depression is a common reaction following spinal cord injury. The respondents also described other emotional responses including grief and loss reactions, fear, and anxiety. From the qualitative data also emerged a number of strategies that were used to manage the emotional responses to disruption to life caused by the spinal cord injury. These strategies included cognitive and behavioural strategies, which act to mediate the impact of the disruption caused by the injury.

Counselling assists the individual to deal with the emotional responses to the injury. Through counselling the social worker assists the individual to ventilate feelings, define the problems and explore solutions. Counselling can not provide solutions to environmental problems but may assist the individual to cope emotionally and cognitively with the challenges confronting them with his/her physical and social environments. This is not to imply that environmental concerns should not be challenged. Interventions addressing environmental issues will be discussed in a following section of this chapter.

The focus of counselling is to empower the client to regain control and to address practical, emotional and social concerns. The sense of being out of control in itself often results in emotional and behavioural problems. Because the needs of clients who sustain spinal cord injuries are so diverse it is essential to remain flexible in the theoretical approach and mode of delivery of counselling services. It is the individual's unique response to his/her emotional, physical and social situations that should be the target of interventions. It is the individual's interpretation of the situation and his/her perception of change that is most important.

The person who sustains a spinal cord injury may also confront personal adjustment issues, marriage/relationship issues, sexual concerns, parenting problems and experience grief and loss. As demonstrated in the data none of these responses are universal. There has been a tendency in the development of specialised medical services for people who sustain spinal 253

cord injuries that all will require counselling to adjust or come to terms with what has happened to them. However the respondents in the study made a very good adjustment over time. Counselling services were available to them while they were hospitalised but only very limited counselling services were available in the community following discharge from hospital. Few respondents received any formal counselling following discharge from hospital. However the ready availability of appropriate and sensitive counselling services may have assisted some respondents who experienced ongoing depression and problems accessing adequate community support services.

From the data, a number of counselling approaches that might be appropriate can be inferred. Crisis counselling as already discussed is particularly useful in the initial stages following injury. Cognitive/behavioural approaches which address stress management, problem solving, social skills, and assertion training can be particularly useful in assisting the injured individual to acquire skills useful for living in a society, where services are limited and administered by complex bureaucratic processes. Counselling may be required more in the early stages of adjustment but as confidence grows and respondents re-established accepted family and community roles the need for counselling services will decrease.

After the initial period of adjustment the counselling services required by people with spinal cord injuries will usually be the same as those required by other members of the community. Long term counselling needs are likely to be related to marriage problems, stress or life stage changes as experienced by the general community. The assumption that people with spinal cord injury require long-term emotional support or counselling is not supported from the data nor confirmed by other researchers (Lenny, 1993; Oliver, 1990).

A key role of the social worker in the rehabilitation team is to help other treating therapists develop flexibility in recognising the unique set of life values and goals held by each client to facilitate realistic goal setting and goal choices. Flexibility and creative problem solving are the keys to successful rehabilitation. Successful rehabilitation of course rests soundly on successful psychosocial adjustment. Recognising that the coping process is specific and unique for each individual and depends on many different factors is essential to adequately address the complex rehabilitation needs of the individual. Working with the individual to expand options and choices results in an enhanced sense of control. 254

Pain emerged as a substantial problem reported by the respondents. Counselling regarding pain management techniques should be available either as a part of the initial rehabilitation program or as an outpatient following discharge from hospital if required. The development of effective, multi-disciplinary approaches to pain management need to be further progressed as previously discussed.

Techniques that empower people, such as assertiveness training or advocacy skills could assist in overcoming some of the feeling that other people are more in control of their lives. It is well documented that those who perceive themselves as being more in control of their lives despite the degree of disability are more likely to achieve a satisfying quality of life (Emener, 1991; Forrest & Gombas, 1995; Krause, Stanwyck et al., 1998; North, 1999; Platts & Fraser, 1993; Richmond et al., 1992; Schultz & Decker, 1985).

INTERVENTIONS TO ENHANCE LINKAGES TO RESOURCES, SERVICES OR OPPORTUNITIES To cope with the impact of a spinal cord injury the injured individual needs advice about entitlements and services. Social workers and other rehabilitation professionals are able to provide advice about the range of services that are available to assist such as income support, funding sources for necessary equipment, funding and advisory sources for home modifications, personal care services and suppliers. The eligibility criteria for services can be very confusing and the injured individual may require assistance to determine the best source or sources of assistance to meet his or her needs. Also the availability of services varies depending on locality. Rural remote areas have fewer services and creative solutions may need to be explored to meet the injured individuals need if they reside outside major metropolitan areas.

It is common that community service providers are not familiar with the needs of a person with spinal cord injury and the social worker may need to provide some education about the necessity of certain services. Other rehabilitation professionals are frequently asked to justify the need for an expensive equipment item. Rehabilitation professionals must be prepared to

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act as a mediator, advocate and educator both for service providers and consumers of services.

The injured individual may need to acquire a range of skills that may be outside his or her prior life experiences, such as skills with dealing with bureaucracy, managing personal carers, finding information and negotiating with local services. Some of these skills can be incorporated into the practice and training programs of the rehabilitation unit. Social and communication skills are demonstrated by rehabilitation professionals and can be part of the rehabilitation education program.

Without adequate information about services, choices and rights it is impossible for the injured individual to exercise control over how his/her needs should be met. In hospital the individual is surrounded by rehabilitation professionals from various fields. Information overload may occur during this period of rehabilitation but on discharge from hospital access to sources of information dried up for many of the respondents. Outside of the spinal unit there are few places people can go for information, advice and support of a specialist nature. Within the hospital there is a strong emphasis on the medical and physical aspects of rehabilitation and social work services are overstretched. This results in gaps in the services provided and the information and advice received.

Most of the challenges of adjustment are confronted after leaving hospital. However access to information services was restricted after discharge and compounded by the geographical and demographic distribution of populations and services in Queensland. Some of these problems have been addressed in the development of a transitional rehabilitation service and an outreach service specifically for people with spinal cord injuries since the conclusion of this study. These services have been funded on a temporary basis to investigate the merit of such services and to date have no guarantee of ongoing funding, despite the already documented social, economic and medical benefits of both programs. The Paraplegic and Quadriplegic Association of Queensland also provides a free telephone advisory service and an in-home advisory service for people with spinal cord injuries which is available to all people with spinal cord injury but primarily target those most recently discharged from hospital. Disability Queensland provides a free disability advice telephone service but people with spinal cord injury often are referred back to one of the existing specialist hospital based 256

spinal injury services. My experience in the field suggests that all of these services are over stretched and co-ordination and maintaining up to date information across such a vast state and covering the range of issues to be addressed represents an ongoing challenge for these services.

Interventions which help the injured individuals develop strategic linkages with services which best address their needs, in a way which empowers them to exercise control and live independently are vital to facilitate successful adjustment. The complexity of the bureaucratic processes which are dominated by an expert mentality of the service provider can often serve to disempower the injured individual. Dealing with such organisations requires knowledge of the guidelines, policies and rights. Also skills in assertiveness and negotiation as well as limitless patience are necessary when dealing with many bureaucratic organisations.

MACRO INTERVENTIONS (SYTEMIC OR STRUCTURAL CHANGE TO PROMOTE INCLUSION AND EQUITY) The social model of disability suggests that disability is the consequence of environmental factors which include structural and attitudinal barriers. However, "the social concept of disability may not, on its own, have sufficient explanatory power to address the way disabled people actually behave and feel about disability as it does not explicitly include the range of meaning that disability can have for different individuals. It is nevertheless highly significant because it immediately raises the possibility of alternative social arrangements which would facilitate their participation in society and actively change the experience of disability." (d'Aboville, 1993, p. 70). It is these alternative arrangements which become the target of the macro interventions discussed in this section.

Professionals working in the disability fields, and particularly in relation to people who sustain spinal cord injuries, have been traditionally viewed as clinical professions. The macro functions which include advocacy, service co-ordination, consultation, program development and policy analysis and development are often the neglected areas of practice, with rehabilitation professionals preferring to focus on clinical practice and the mechanics of 257

physical function. Macro-level interventions engage the practitioner in organisational, community and policy areas to promote changes in service delivery, government policy, organisational structures, and social attitudes, which are more inclusive to people with disabilities (Gibelman, 1995; Netting, Kettner, & McMurtry, 1993).

Advocacy As presented in Chapters Six to Nine the adjustment process is influenced by multidimensional and complex interactions between various life spheres. Problems such as lack of access, lack of appropriate equipment, lack of financial resources and lack of support services are examples of problems, which confronted the respondents and negatively impacted on the adjustment process. Most respondents coped with the challenges confronted and moved forward in the adjustment process. However particularly in the environmental sphere many of the challenges confronted represented broader social issues related to inequities, powerlessness, vulnerability and discriminatory practices experienced by people with disabilities in the community and society at large.

Advocacy has been an important role for social work since the earliest days of the profession. Simply stated advocacy is about working towards changes that will make things better for the people or groups represented. Advocacy is based on the principles of social justice and equity for all people. It is about representing the rights of those who are powerless or vulnerable in society, fighting injustices and protecting the rights of people who are being treated unfairly. (Parsons, 1994). Advocacy occurs on both the micro (individual) and the macro (organisational, political and societal) levels. Advocacy involves confronting the unmet needs, social problems, and environmental barriers of clients both individually and collectively (Adams, 1996; Craig, 1998; Gibelman, 1995; Netting et al., 1993).

On the micro level advocacy occurs at the interface of the interactions between the individual and his/her environment. For example it may involve advocating or negotiating for specific needs such as equipment, accommodation, home modifications, transport or support services for a particular individual. As demonstrated in the data the impact of not having adequate mobility aids, accommodation or personal care support can be substantial and in turn impacts on the effectiveness of coping efforts of the individual. Advocacy at the micro level 258

frequently involves negotiation with other organisations to ensure the needs and rights of the client are met and respected. Also on the micro level the injured individual can be assisted to gain skills and supported in representing his/her own needs. This empowers individuals and can contribute to social change by giving people with disabilities a real voice in any advocacy that is undertaken by them or on their behalf. Change on the micro level can contribute to macro level change in the long run.

While advocacy on the micro level is vital for people who sustain spinal cord injury the need for advocacy at this level exists because of lack of resources, lack of understanding of needs of people with spinal cord injury and inequities on a macro level in our society. At the macro level advocacy involves the preparation and presentation of arguments or alternative perspectives to those who are in power to make decisions that affect policy and services. An example would be advocacy to change policy or practices to be more responsive to needs of people with spinal cord injuries, such as adequately resourced individualised personal care available as a matter of right to those who need support. Social workers and rehabilitation professionals are in a unique position to be able to work with people with spinal cord injuries to address many of the environmental factors that impact on their lives. Social workers and other rehabilitation professionals can document and quantify the needs of people with spinal cord injuries as well as being in a position to identify ways in which services, policies and community structures can be improved to better meet the needs observed. Macro level advocacy interventions can utilise both administrative strategies, such as data collection, consensus building, consultation/advice, and social planning or confrontational strategies such as media campaigns or lobbying, or demonstrations. It may involve representation on management committees, serving on advisory bodies, preparing discussion papers, working with the media, empowering people with disabilities to have a real voice in our communities, involvement in advocacy campaigns, or networking with other organisations.

Service Co-Ordination Service co-ordination is an important role but unfortunately is often lacking in the Queensland setting. The respondents reported problems with long delays obtaining modifications to their homes, equipment supply or maintenance as well as problems with the intrusive nature of the way some services were provided. Some respondents relied on 259

multiple agencies to meet their complex needs. This usually entailed multiple assessment procedures. Services are often provided to meet needs as defined by the organisation and are seldom designed to be flexible enough to meet the range of individualised needs presented by the respondents. Community services are frequently funded to provide services for aged populations and people with severe disabilities are sometimes viewed as requiring too much of the budget allocated for aged care. One agency was reported as saying the needs of one young disabled client would consume too much of their budget because he required more hours of support than they allowed per client. On that basis he was refused assistance. Thus those who may require the most assistance may be the most disadvantaged, especially if their needs do not fall neatly into the pre-defined roles the organisation has determined about the way services will be provided. For example a working person with quadriplegia may find it very difficult to obtain personal care assistance with bathing, dressing and bowel and bladder routines that will support their work routines unless they have the financial resources to purchase their own care privately.

The data highlighted the highly individual needs and lifestyles of the respondents. Largely the respondents were a group of well young people who were living with a disability, which meant that they required physical support. They were not cognitively impaired. They displayed a sound understanding of their own needs and were well aware of the factors that negatively impacted on their adjustment.

This administrative fragmentation of social and community services, difficulties obtaining information about entitlements and lack of understanding about the specific needs related to spinal cord injury in the community underline the need for co-ordination and follow-up of services. This is often emphasised in other research (Oliver et al., 1988). Both advice and coordination are important factors, which can facilitate obtaining needed services in a timely and supportive manner.

Clearly services are under funded which results in rationing of services and restricts consumers choices about how their needs will be met. Clients of these services feel extremely vulnerable and entitlement often has more to do with the disposition of the assessing staff member who may or may not have an adequate knowledge of spinal cord 260

injury, and may present an insensitive attitude to the need for the injured person to maintain control over the decisions which affect his/her life.

Lack of co-ordination results in fragmentation of services and a failure to meet needs in a way that is inclusive and supportive of independent lifestyles. Distribution of services is not equitable with people who live in rural remote areas being particularly disadvantaged. Eligibility criteria are often defined and interpreted by the service providers narrow definition of need. Services are inflexible in meeting changing or evolving needs. Lack of follow-up by a co-ordinator often results in lengthy delays in obtaining necessary services, and this is further compounded by a lack of knowledge about spinal cord injury in the community.

Consultation In the discussion above a number of concerns with the administrative practices and service delivery models of programs and policies which impact on the quality of life of people with spinal cord injuries have been highlighted. Social workers and other rehabilitation professionals are in a unique position to provide advice and guidance to agencies and organisations to increase the effectiveness and quality of the services available for people with spinal cord injuries. Consultation may occur at the organisational level as well as at the policy and planning level as discussed below. The multi-dimensional understanding of the adjustment process that has been developed throughout this study provides an ecological, systems perspective, which can enhance the consultative role in understanding and changing organisational and societal to better address the need of people with spinal cord injuries.

Policy and Program Development One of the other macro interventions which is important to ensure the ongoing enhancement of quality of life for those who sustain spinal cord injuries includes policy and program planning and development. Policy and program development involves working at the systems level to develop the programs and policies, which govern the services and resources that are available in the community. Social workers and other rehabilitation professionals can use their unique and intimate knowledge of client needs, organisational structures and community development processes to facilitate the development of programs and policies that meet the 261

recognised needs of people with spinal cord injury both in hospital and community settings. Once again, consistent with the recurring theme that is emerging in this study is the need to hear and respect the voices of those with spinal cord injury. They are the ones who are best in a position to define their needs and contribute to the development of responsive strategies to meet these needs.

Social workers working with people with spinal cord injuries are in a unique position to hear their concerns, quantify needs and help clarify problems. Also because of the close links social workers have with other community and service organisations they are in a position to identify gaps in services and critique service delivery practices and government policy. Program and policy planning needs to address problem identification, consultation about possible solutions, consensus and ownership of the problem, the resource needs, and practical aspects of service delivery. Consistent with the practices of empowerment people with spinal cord injuries must be recognised and supported to fully and equally participate in the change process. The strength of being intimately acquainted with the issues and concerns of people with spinal cord injury gives authority to the voice of rehabilitation professionals when they seek to influence policy and particularly adds strength to arguments for adequate resource allocation for program development. Scarcity of resources is the most common restriction of program development. The advocacy roles discussed above are crucial in addressing these shortfalls.

STRENGTHS AND LIMITATIONS OF THE FINDINGS The strength of this thesis has been in the commitment to examine the adjustment process in a way that accounts for the complexity and multiplicity of interacting factors, which influence the process. Throughout the study the perspective of the respondents has been respected and I trust that I have presented their story about adjustment in a way which truly reflects their struggles and successes. The depth of experience shared by the respondents adds a richness to our understanding of coping with a spinal cord injury in a way in which the numbers alone can never do.

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By combining qualitative and quantitative approaches in a longitudinal study a rich understanding not only of the outcomes achieved but also the process itself is revealed. It is believed that this is the only study that has worked so intimately with a group of respondents over such an extended period of time. The Minnesota Longitudinal Study (Krause, 1992c, 1992d; Krause, 1998b) has provided a wealth of data on outcomes and factors which contributes to the understanding of the adjustment process. However, the insights gained in this study by combining qualitative and quantitative methodologies have allowed a view to emerge which extends and expands the existing work.

This thesis addresses issues related to adjustment immediately after sustaining a spinal cord injury (i.e. the first three years post discharge from hospital). The issues that are of primary interest as time progresses post injury may very well be different and the emerging research driven by disability groups would support this suggestion (Oliver, 1993; Oliver et al., 1988). It would be valuable to continue this study and maintain the focus on telling the story from the perspective of people with spinal cord injuries rather than quantifying results/outcomes only. It would be interesting to ask the participants what outcomes were of importance to them. One of the strengths of the study design is the potential to extend the study into a much longer longitudinal study which identifies and addresses some of the issues related to the progression of time since injury. The extension of our understanding of longer term adjustment following spinal cord injury is vital as the number of people ageing with spinal cord injury increases as medical care and quality of life improves.

The study has focused on adjustment related to the injured individual. The role of the family in the process is acknowledged but more research in the adjustment process in families is required. This is especially important in light of the respondents emphasis on the importance of family support through the trauma. The issues for families may also change over time. Initially they may experience substantial crisis similar to that experienced by the injured individual. However as time since injury progresses the burden of care may create a different set of issues.

There was an enormous volume of data collected in this study. The analysis of the qualitative data presented a number of challenges. The qualitative data analysis methods of Strauss and Corbin (Strauss & Corbin, 1990) were utilised to overcome these challenges. Computerised 263

qualitative data analysis programs were not in common use at the commencement of this study, in 1992 and were not utilised. In part this was because interviews could not be recorded due to technical problems related to telephone interviewing. Computerised analysis of qualitative data has now become the accepted standard in qualitative analysis and may have further enhanced the interpretation of the data. An alternative method of interpretation would have been to adopt a case study analysis procedure. A case study approach would have allowed for comparison of the effectiveness of various coping strategies and the impact of various environmental variables. The potential to extend the findings of the study by applying this technique to the existing data could form the basis of a future examination of the data.

The study relied on defining the degree of disability by the need for personal care as reported by the individual. This approach has the strength of truly reflecting the perceived degree of dependence of the individual. However combining this approach with an objective quantifiable functional measure would have enhanced the analysis and interpretation of the findings. It is recommended that a measure such as the Functional Independence Measure (FIM) or the Barthel Measure be incorporated in any extension of the study.

RECOMMENDATIONS FOR FUTURE RESEACH Spinal cord injury involves close family and friends but their adaptation to the changes they experience is seldom addressed in the research literature. This is particularly important in light of the evidence of the important role of social support in facilitating effective adaptation. The process of adjustment from the familys perspective requires further investigation.

Given the prevalence of depression and the negative impact of depression on the adjustment process, research which focuses on interventions to prevent or minimise depression are essential. We also need to develop education and screening processes, which facilitate effective treatment of depression. Alternatives to drug therapy should be investigated.

The respondents utilised a variety of cognitive and behavioural strategies to cope with the impact of their injuries. Therapeutic programs which teach these types of strategies may have 264

the potential to assist those who are experiencing adjustment difficulties. There is some evidence of the success of cognitive behavioural programs in spinal cord injury rehabilitation (Craig et al., 1998b). If cognitive behavioural interventions are advocated, we need to further investigate their effectiveness over time and the components that can be taught and sustained.

CONCLUSION The aim of the study was to explore the impact of spinal cord injury on the individual over time and identify ways in which people cope with and react to the conditions a spinal cord injury. It posed questions about the how spinal cord injury effects the psychosocial, health related and environmental life spheres of the individuals who sustain a spinal cord injury and identifies processes and strategies that facilitate adjustment over time. By adopting a holistic approach, incorporating an ecological perspective of the coping process, this study extends the understanding of the adjustment process beyond the traditional concepts of psychological reactions. It provides a rich understanding of the adjustment process following spinal cord injury with due emphasis on the complexity and multiplicity of factors which impact of the process. The how of adjustment is further revealed by considering the process of change over time.

This study provides a rich understanding of the adjustment process following spinal cord injury. Qualitative and quantitative approaches were combined to develop a holistic picture of the impact of spinal cord injury on the individual and to fully explore how this impact was accommodated within the lives of the respondents.

Thus the study addresses a crucial gap in the current understanding of the adjustment process by adequately addressing the complexities inherent in the adjustment process over time and accommodating the various life spheres in which the individual operates. It expands the current understanding of the process, by identifying variables that relate to successful outcomes and the strategies that are used to achieve these outcomes. The study further extends the understanding of the process of adjustment by examining the way in which the variables relate to and interact with each other and thus impact on the process.

A new comprehensive model of adjustment was developed from the data (Chapter Six) and 265

discussed in relation to indicators for effective social work and rehabilitation practice (Chapter Ten). Multiple levels of interventions are identified reflecting the complexity and interactive nature of the factors impacting on adjustment.

The findings indicate that overall the respondents made a good adjustment to the disruption caused in their lives by sustaining a spinal cord injury. However a number of challenges which confronted the respondents were identified in the both the qualitative and the quantitative data (Chapters Five and Six). The respondents utilised a variety of coping strategies to overcome the barriers and challenges they confronted (Chapter Seven). The effectiveness of the coping efforts of the respondents was mediated by a variety of health and environmental factors in interaction with the intra-personal resources of the individual (Chapter Eight).

Thus the main findings from the study highlight the complexity of the adjustment process and the range of interacting factors that impact on the process. The findings further highlight the variety of individual responses to spinal cord injury and the unique influence of the individuals social and physical environments. Interventions focusing on the strengths of the individual, social networks, problems solving, environmental issues and social change are discussed. The importance of interventions targeted at both the micro (individual) level and the macro level (influencing social and cultural attitudes, policy and programs) are discussed. The implications for social workers and other rehabilitation professionals are presented in this Chapter.

This study has substantial implications for the practice and teaching of social work other rehabilitation practice with people who sustain spinal cord injury. It is a tribute to those respondents who gave so freely of themselves to make this study possible. Many of the respondents expressed the desire to make the world a better place for people with disabilities. It is my sincere hope that the insights gained through this study will make a contribution towards that aim.

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APPENDIX ONE LIFE SATISFACTION QUESTIONAIRE

FACTOR ANALYSIS - LIFE SATISFACTION To confirm the factor structure reported by Krause (Krause, 1992c) a factor analysis of the data set generated by this sample on the Life Satisfaction sub-scale at six months post discharge from hospital was investigated.

Before proceeding with the factor analysis, the condition of the data matrix was examined by calculating the Kaiser-Meyer-Olkin (KMO) Measure of Sampling Adequacy. This measure indicates the amount of shared variance in the item pool, and may range from zero to one. The KMO index for the 11 x 11 matrix was .74 which is a level considered acceptable for factor analysis (Kaiser, 1974). Thus assumptions about the factorability of the correlation matrix were confirmed (Bartlett's Test of Sphericity = 207.15, p<0.001).

A ratio of a minimum of 5-10 participants per items has been recommended as a minimum acceptable sample size for factor analysis (Coakes & Steed, 1996). The ratio of 4.5 falls slightly below this standard but it was decided to proceed with the factor analysis as the purpose was to confirm the factor structure reported in the Krause study based on a much larger sample (Krause, 1992c).

The SPSS Factor Analysis procedure was applied to the data. Initial statistics suggested three factors with eigenvalues greater than one should be retained. The three factors accounted for 43%, 13% and 11% of the variance in the data. Principal-axis factoring with varimax rotation was applied and items on each factor with loading of .40 or more were retained (Coakes & Steed, 1996; Tabachnick & Fidell, 1989). Loading on each variable on the three factors is reported in Table A1.1

The stability of this factor structure was further investigated by repeating the principal axis factoring process on the other data sets collected at 12 months, 24 months and 36 months post discharge forcing a three-factor solution with varimax rotation on each occasion. The stability of the factor solution failed to be confirmed with a different factor structure emerging for each data set. 267

Table A1.1 Variable Loading Life Satisfaction Scale

SATISFACTION WITH: Life Opportunities Amount of control over your life Emotional adjustment General Health Social Life Recreational Opportunities Sex Life

Factor 1 .83095 .75432 .73580 .69424 .68458 .64909 .42133

Factor 2 -.06541 .27571 .22298 .01681 .29023 .31126 .25514

Factor 3 .15172 .01122 .05459 .30092 .14322 .09498 .12466

Financial Means Employment

.14464 .25278

.76426 .69172

.28644 .02163

Living Arrangements Family Relationships

.19971 .06317

.02381 .30458

.76418 .51003

This process was repeated forcing a two-factor solution with a much greater degree of stability demonstrated. When a two-factor solution was forced, a pattern very similar to that reported by Krause (Krause, 1992c, 1992d; Krause & Dawis, 1992) emerged for the present data set at 6,12 and 24 months. However for the data set generated at 36 months SPSS Principal Axis Factoring was unsuccessful and terminated because the communality of a variable exceeded one.

Krause reports that the item "living arrangements" did not load on either factor. In this data set this was also the case at six months post discharge but at 12 and 24 months it loaded quite strongly on factor 2. In the data generated from this study Family Relationships also loaded strongly with Factor 2. The inability to confirm the factor structure with this data set is not unexpected as discussed above. The sample size was small. The dropout rate in this study 268

meant that the group composition changed at each point of measurement. In a larger sample this effect may have been minimised. At the time since injury was increasing at each point of measurement and was much less than the time since injury of the Krause sample (Krause, 1992c, 1992d; Krause & Dawis, 1992).

Conceptually it seemed to fit better with the items loading on Factor 1. Given the much larger sample size of the Krause and Crewe study and high level of similarity between the factor analysis generated from this data set and that reported in their study, the results from the Life Satisfaction Scale will be reported in the same manner as reported by Krause (1992d).

Factor 1 will be labelled General Satisfaction with eight items loaded on this scale. These include: social life, sex life, general health, family relationships, recreational opportunities, life opportunities, emotional adjustment, and amount of control over life. Two items, employment and financial means will be loaded on the second factor, which is labelled Economic Satisfaction. Reporting these scales in this manner will aid comparisons between the two studies. See Table A1.2 below of variable structure of sub-scales.

Krause (1992d) reports internal consistency of a mean Cronbach's alpha for the two scales of .81, with the alpha coefficient for the General Satisfaction Scale of .86 and the Economic Satisfaction Scale of .76.

Responses from the present study for the General Satisfaction and Economic Satisfaction Scales were subjected to the SPSS Scale Reliability tests to determine internal consistency and reliability. The mean alpha for the General Satisfaction Scale over all four points of measurement was .82 (ranging from .78 - .85). The mean alpha for the Economic Satisfaction Scale was .85 (ranging from .83 - .87). Thus, a high degree of internal consistency is demonstrated in both scales.

269

Table A1.2 Conceptual Fit of Variables - Life Satisfaction Scale

Krause and Crewe (Krause, 1992d) Life Opportunities (.64) Amount of Control over Life (.69) Factor 1 General Satisfaction Emotional Adjustment (.69) General Health (.54) Social Life (.70) Recreational Opportunities (.65) Sex Life (.55) Family Relationships (.48) 6 Months PostDischarge 12 Months PostDischarge 24 Months Post Discharge

Life Opportunities (.85) Amount of Control over Life (.73) Emotional Adjustment (.73) General Health (.70) Social Life (.68) Recreational Opportunities (.64) Sex Life (.43) *Living Arrangements (.26)

Life Opportunities (.80) Amount of Control over Life (.71) Emotional Adjustment (.66) General Health (.74) Social Life (.80) Recreational Opportunities (.74) Sex Life (.46)

Life Opportunities (.76) Amount of Control over Life (.64)

General Health (.69) Social Life (.74) Recreational Opportunities (.69) Sex Life (.29)

Employment (.46) Financial Means (.60) Financial Means (.52) Employment (.46) Family Relationships (.60) **Living Arrangements (.85)
**Both employment and Financial means load on both factors at 12 months

Employment (.57) Financial Means (.44) Financial Means (.45)

Financial Means (.74) Factor 2 Economic Satisfaction Employment (.77)

Financial Means (.90) Employment (.59) Family Relationships (.43) *Living Arrangements (.26)
*Living arrangements loaded equally on both factors at 6 months

Family Relationships (.89) Living Arrangements (.79)

270

APPENDIX TWO PROBLEMS OF LIFE SCALE

FACTOR ANALYSIS - LIFE PROBLEMS SCALE The Life Problems Scale is another subscale of the LSQ (Krause & Crewe, 1990). It consists of a bank of 16 items that ask each respondent to indicate on a 5-point Likerttype scale the degree to which they experienced problems with various aspects of their life. Scores could range from 13 - 65, with higher scores indicating more problems. The items included: pain, loneliness, lack of control over their lives, difficulty making new friends, lack of adequate income, boredom, lack of transport, dependency, health problems, depression, family problems, conflicts with attendants, negative attitudes towards the disabled, lack of accessibility, alcohol and drugs, and stress.

Krause and Crewe (Krause & Crewe, 1990) derived three factors, which accounted for 57% of the variance when this scale was subjected to factor analysis. To confirm this factor structure the SPSS factor analysis procedure described above was repeated with the data generated from the Life Problems Scale.

No stable factor structure emerged for this study. Factor analysis of the responses obtained from the present study failed to produce consistent results at various points of measurement, with as many as four factors being extracted by SPSS and items loading on different factors at different points of measurement Conceptually the factor analysis did not aid interpretability of the findings on this scale and 41% of the variance was accounted for by the single item, problems with access. The factor structure described by Krause and Crewe (Krause & Crewe, 1990) could not be replicated in this study, possibly due to the small sample size.

Therefore it was decided to report these findings as a single scale reporting perceived problems in life with means reported on each item individually. Individual mean scores are from one to five, with five indicating greater degrees of life problems.

271

APPENDIX THREE STUDY QUESTIONAIRE THREE YEAR FOLLOW-UP QUESTIONNAIRE

DATE OF INTERVIEW: ______________________________________________________ I.D. NUMBER: ____________________________________________________________

1. 2. 3. 4.

Name: _____________________________________________________________ Address: ___________________________________________________________ Telephone: _________________________________________________________ Are your present living arrangements different from the last time we talked? ___________________________________________________________________ Has your Marital Status changed since our last interview? YES

5.

NO

If Yes, please explain: ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ 6. 7. How many children do you have? If you are single: a. b. Do you date: YES ! If yes, how often: ! occasionally ! three or four times a month 8. 9. ! once or twice a month ! more than once a week NO ! 0 1 2 3 4 5 6 7 >7

Source of Income: ___________________________________________________ Fortnightly Income: __________________________________________________

272

10.

Have you instigated a claim for compensation/insurance since our last interview? YES ! NO !

If so what type of claim: ______________________________________________

11.

Have you received Insurance/Compensation payments at this stage? ____________ If so would you mind telling us how much? ______________________________

12.

Have you commenced employment or changed employment in the last 12 months? YES ! NO !

If yes, What is your occupation? _______________________________________ (include homemaker and voluntary employment) 13. If you are currently employed, how many hours would you work per week (on average): ____________

14.

How would you rate your satisfaction with this job on a scale of 1 - 5 with 5 being very satisfied and 1 being very dissatisfied? Very Dissatisfied 1 2 Neutral 3 4 Very Satisfied 5

15.

If you have commenced work in the last 12 months, how long after your injury

was it before you returned to work? __________________________________________

16. 17.

How long have you been working since your injury? ______________________ Have you undertaken any study since your injury? YES ! NO !

If YES what type of study? ___________________________________________

273

18.

Have you had any problems obtaining suitable aids/equipment in the last 12 months? Please explain: ____________________________________________

19.

Have you or your family had to purchase any special aids or equipment in the last 12 months? If so could you estimate the cost? _____________________________ Is your home fully accessible. YES ! NO !

20.

If not please explain __________________________________________________

21.

What is your main source of transport? ___________________________________________________________________

22.

What is access like in your local community? YES Public Toilets Shops Pub/Hotel Movie Theatre NO Library Bank Teller Machines YES NO

23.

Do you need assistance with personal care tasks? If so, who is your main source of support? ___________________________________________________________________ Do you need any other assistance? ___________________________________________________________________ How is this need met? ________________________________________________

24.

26.

Are there any gaps in the services you need and those you actually receive? Please explain. ___________________________________________________________________

274

27.

Approximately how many times have you done the following activities within the past 12 months? None 1-3 4-6 7-12 13-18 19-30 > 30 Attended a sporting event attended a nightclub/bar attended a concert attended a movie, play ate dinner in a restaurant attended a museum/art show went on an out-of-town trip played competitive sports lifted weights/gym went boating/fishing participated in a w/c race swimming went for a walk/wheel any other activity ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! !

a) b) c) d) e) f) g) h) f) g) h) i) j) k)

28.

Approximately how many hours per week do you spend doing the following activities? None 1-5 a) b) c) d) watching TV listening to music reading hobbies ! ! ! ! ! ! ! ! 6-10 ! ! ! ! 11-15 16-30 31-45 > 45 ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! !

29.

How often do you exercise? ! rarely ! once per month ! 2-3 times per month ! 1 - 2 times per week ! 3 - 4 times per week ! five or more times per week

30.

How often do people come to see you? ! rarely ! once per month ! 2-3 times per month ! 1 - 2 times per week ! 3 - 4 times per week ! five or more times per week 275

31.

How often do you get away from home for social or entertainment purposes (for example, to go shopping, visiting or on an "outing"? ! rarely ! once per month ! 2-3 times per month ! 1 - 2 times per week ! 3 - 4 times per week ! five or more times per week

32.

Which of the following organisations, if any, are you an active member (that is, you usually attend the meetings)? ! none ! church ! hobby ! social ! recreational

! disabled group ! business-professional

! other (please specify)

33.

Activities of Daily Living: For the following activities, please indicate whether you are: I PD D DA a) b) c) d) e) f) g) h) i) j) k) l) m) n) = = = = Eating Dressing Personal Hygiene Catheter Care Bowel Programme Transfers Wheelchair Use Walking Writing Typing Telephone Use Cooking Housekeeping Driving Independent (you need no help from another person) Partially Dependent (you need some help) Dependent (someone else must do it for you) Does not Apply __ __ __ __ __ __ __ __ __ __ __ __ __ __ 276

34.

What is your sitting tolerance per day? (circle the number of hours)

0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 > 20

35.

Within the last 12 months, how many times (if any) have you gone to the doctor for treatment of a medical problem of any kind (Do not include Routine checkups e.g. IVP's)?

0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 > 20

36.

Within the last 12 months approximately how many days (if any) have you been hospitalised for any reason other than a routing checkup? ! ! ! ! ! ! have not been hospitalised in the last 12 months (GO TO Q39) 1 to 3 days 4 to 6 days one to two weeks (7 to 14 days) three to four weeks (15 to 28 days) more than four weeks (29 days or more).

37.

Within the last 12 months how many times have you been hospitalised for the following? (> 3 = more than three): a) b) c) d) e) f) g) h) i) j) pressure sore 0 1 1 1 1 1 1 1 1 1 2 2 2 2 2 2 2 2 2 3 3 3 3 3 3 3 3 3 >3 >3 >3 >3 >3 >3 >3 >3 >3

urinary tract infection (UTI) 0 kidney or bladder stone pneumonia infection other than UTI dysreflexia bowel obstruction accidents/broken bones blood clots loss of function (spinal abscess) 0 0 0 0 0 0 0

>3 277

Within the last 12 months how many pressure sores have you had?

0 1 2 3 4 5 6 7 8 9 10 11 12 >

Approximately how many days over the 12 month period were you forced to reduce your sitting time as a result of these sores. ! none ! 3 to 4 weeks ! 13 to 18 weeks ! less than 1 week ! 5 to 8 weeks ! more than 18 weeks ! 1 to 2 weeks ! 9 to 12 weeks

On a scale of 1 to 5, with 1 being poor shape for a person with your level of spinal cord injury and 5 being excellent shape, how would you rate your:

A) B) C) D) E)

General fitness level 1 Co-ordination Flexibility Strength Endurance 1 1 1 1

2 2 2 2 2

3 3 3 3 3

4 4 4 4 4

5 5 5 5 5

278

41.

Circle the number for each statement which best describes how often you felt or behaved this way - DURING THE PAST WEEK
Rarely or None of the Time (Less than 1 day) 1 I was bothered by things that usually don't bother me I did not feel like eating; my appetite was poor I felt that I could not shake off the blues even with help from my family or friends I felt that I was just as good as other people Some or Little of the Time (1-2 days) Occasionally or a Moderate Amount of the Time (3-4 days) Most or All of the Time (5-7 days)

I had trouble keeping my mind on what I was doing 0 I felt depressed I felt that everything I did was an effort I felt hopeful about the future I thought my life had been a failure I felt fearful My sleep was restless I was happy I talked less than usual I felt lonely People were unfriendly I enjoyed life I had crying spells I felt sad I felt that people disliked me I could not ge t'going' 0

1 1

2 2

3 3

6 7

0 0 0 0 0 0 0 0 0 0

1 1 1 1 1 1 1 1 1 1

2 2 2 2 2 2 2 2 2 2

3 3 3 3 3 3 3 3 3 3

10 11 12 13 14 15 16 17 18 19

0 0

1 1

2 2

3 3

20

279

42.

How satisfied are you with the following aspects of your present life? (Circle the number that describes your feeling on the following scale of 1-5, with 1 being very satisfied and 5 being very dissatisfied).
1 3 5 Very satisfied 2 Neutral 4 Very dissatisfied Somewhat satisfied Somewhat dissatisfied

Very Satisfied a) b) c) d) e) f) G) h) i) j) jk Living Arrangements Employment Financial means Social life Sex life General health Family Relationships Recreational opportunities Life Opportunities Emotional adjustment Amount of control you have over your life 1 1 1 1 1 1 1 1 1 1 1 2 2 2 2 2 2 2 2 2 2 2

Neutral

Very Dissatisfied 4 4 4 4 4 4 4 4 4 4 4 5 5 5 5 5 5 5 5 5 5 5

3 3 3 3 3 3 3 3 3 3 3

43.

Suppose that a person's overall adjustment to spinal cord injury could be shown on a ladder having ten rungs, with the tenth rung representing the best possible adjustment and the first rung representing the worst possible. a) On what rung on the ladder would you place yourself to indicate your overall adjustment? (Circle the number that describes your adjustment). 1 2 3 worst possible b) 4 5 6 7 8 9 10 best possible

Where on the ladder do you expect to be in five years? 1 2 3 worst possible 4 5 6 7 8 9 10 best possible 280

44.

How much of a problem are the following things for you in your current situation? 1 3 5 No problem A small problem a major problem 2 4 Only a minimal problem a moderate problem No Problem a) b) c) d) e) f) g) h) i) j) k) l) m) n) o) p) q) r) pain loneliness lack of control over your life difficulty in making new friends lack of adequate income boredom lack of transportation dependence health problems depression family problems conflicts with attendants negative attitudes towards the disabled lack of accessibility alcohol or drug abuse stress loss of nueral function 1 1 1 1 1 2 2 2 2 2 2 3 3 3 3 3 3 4 4 4 4 4 4 5 5 5 5 5 5 1 1 1 1 1 1 1 1 1 1 1 1 2 2 2 2 2 2 2 2 2 2 2 2 Small Problem 3 3 3 3 3 3 3 3 3 3 3 3 4 4 4 4 4 4 4 4 4 4 4 4 Major Problem 5 5 5 5 5 5 5 5 5 5 5 5

loss of physical strength or endurance 1

Thank you very much for your participation!

281

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