PENINA WEISS, MSc, OTR, NOAMI HADAS-LIDOR, PhD, OT, and DALIA SACHS, PhD, OT

Family Caregivers Participation in Recovery: Communicating Cognition Based on Dynamic Cognitive Intervention

amily caregiving is the bedrock upon which many countries health care systems depend. Caregiving is an occupation that entails both rewards and challenges, and many people will provide or receive informal caregiving over the course of their lifetime (Sachs & Labovitz, 2004). Caregivers have been identied as a population at risk for developing occupational imbalance. Maintaining caregiver health and well-being is a preventative public health promotion objective, with nancial value of services provided by family caregivers estimated at more than 300 billion dollars a year in the United States alone (National Alliance for Caregiving & Evercare, 2009). Caregiving needs and characteristics differ in diverse populations of consumers (i.e., developmental disabilities, mental health, and the elderly). The caregiving environmental, spiritual, and cultural contexts also merit consideration. The profession of occupational therapy, concerned with enabling persons to do the activities, tasks, and roles self-identied as necessary for daily life, can professionally address the caregiving experience. Supported, well-instructed caregiver and caregiver environments can contribute to the health, wellness, and recovery of the care recipient as well as promote health for caregiving family members (Gitlin, Corcoran, & Leinmiller-Eckhardt, 1995; Sachs & Labovitz, 2004). For economic reasons, prolonged treatment and therapy for many chronic health conditions have shifted from hospital to long-term home-based community care. As hospital length of stay decreases, providing caregivers with support, education, and instruction can enhance personal, familial, and societal goals. Providing family caregivers with therapeutic tools of the trade traditionally used solely

LEARNING OBJECTIVES
Understand the multidimensional aspects of the caregiving role and its scope within a public health perspective, Understand the implications the role of caregiving has for the professional eld of occupational therapy, Identify the need for knowledge translation of occupational therapists skills and knowledge to caregiver and consumer knowledge, and Depict the benets of an intervention program based on the Dynamic Cognitive Intervention model for informal family caregivers.

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by clinicians can expand and broaden therapeutic encounters intended for persons with disabilities; enhance rehabilitative goals and recovery for them; and provide a sense of mastery, usefulness, and guided engagement in occupation for family caregivers. Cognition as a human factor necessary for the smooth carrying out of activities and tasks and cognitive-based positive communication based on the theory of mediated learning experience (MLE; Feuerstein, Rand, Hoffman, & Miller, 1980) and Dynamic Cognitive Intervention (DCI; Hadas-Lidor & Weiss, 2005; also see Chapter 15) principles for family caregivers are presented as approaches for enhancing health, recovery, and well-being of both the person with a disability and the family caregiver.

MULTIFACETED ASPECTS OF CAREGIVING

SCOPE OF CAREGIVING
Caring is a special relationship that encompasses a sense of attachment and commitment to others well-being. Caring, or as Graham (1983) called it, the labor of love, can be dened as the range of human experiences that have to do with feeling concern for, and taking care of, the well-being of others (Graham, 1983). It includes feelings, knowledge, and skills as well as the sensitivity needed to care for someone else. Caregiving is providing services and support to those in need (Moroney et al., 1998). Caring is the spirit, the attitude of respect and concern, in which that service and support is to be provided. Caring is the commitment that the lives of those receiving care be made meaningful (Sachs & Labovitz, 2004). The term caregiver refers to anyone who provides assistance to someone else who is, to some degree, incapacitated and needs help, for example, a husband who has suffered a stroke, a wife with Parkinsons disease, a mother-in-law with cancer, a grandfather with Alzheimers disease, a son with traumatic brain injury after a car accident, a daughter with schizophrenia, a child with muscular dystrophy, and a friend with AIDS (Family Caregiver Alliance, 2005). For many of the medical conditions in which informal caregiving is needed, cognitive abilities of the recipient of care may be compromised. Formal caregivers are volunteers or paid care providers associated with a service system (Fradkin & Heath, 1992; McConell & Riggs, 1994). Despite the development of formal services, care by the family and other informal caregivers is by far the dominant form of care throughout the world. In fact, because of increased longevity, the lifetime risk of having to care for a parent with a disability is much higher now than it was 50 years ago (Weiner, 2003). Informal caregiver and family caregiver are terms that refer to unpaid persons such as family

members, friends, and neighbors who provide care. These persons can be primary or secondary caregivers, may work full time or part time, and can live with or separately from the person receiving care. According to a World Health Organization (WHO, 2000) report on home-based long-term care, family caregivers are the most important human resource in this capacity. They usually provide the greater part of all care, yet the majority of them lack training in health care. The reason for lack of caregiver training and education is that the health care providers primary focus is on the patient, not on the caregiver. This situation is due to health policies, reimbursement practices, time constraints, and traditional medical approaches (Moghimi, 2007). Far too often, the ability of family caregivers to provide for their own personal, social, and nancial needs is seriously compromised by their caregiving roles. The proportion of formal care and informal care varies among countries as a result of how care is organized and nanced but also as a result of traditions and cultural norms. However, in simplied terms, countries with a high gross national product have more formal care, which is illustrated by the relationship between per capita gross national product and expenditures on health care (International Monetary Fund, 2004; Organization for Economic Co-operation and Development, 2006; Wimo, Winblad, & Jonsson, 2007). Estimates of the number of informal caregivers vary widely. The United States has an estimated 44.4 million (21% of the adult population) caregivers age 18 and older who provide unpaid care to an adult family member or friend who is also 18 years of age or older (National Alliance for Caregiving & AARP, 1997, 2004, 2009). These caregivers are present in an estimated 22.9 million households (21% of U.S. households). In a telephone caregiver identication study, one-third of the respondents (34%) age 18 years and older identied themselves as providing or have provided during the past year some type of caregiving assistance. This represents about 65 million people age 18 and older in the United States (Kutner, 2001). An additional estimated 16.8 million unpaid caregivers provide care to children with special needs under the age of 18. The reasons for caregiving are medical, behavioral, or other condition or disabilitywhether the condition is ongoing or a serious short-term medical condition, an emotional or behavior problem, or a developmental problem (National Alliance for Caregiving & AARP, 2009). With increases of up to 300% in the older population of many developing countries and the continuingthough less dramaticincreases in the numbers of elderly people in developed countries, there will be marked and universal growth in the need for long-term care (United Nations, 2002). In addition, public health services, and especially hospital

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services, in developing countries are of poor quality, primarily because of diminishing resources, and most of the population cannot afford private health care. Cost considerations thus tend to shift the burden of both acute and long-term care to the family. In very poor countries, health centers are overwhelmed, staff is not paid for months, drugs and equipment are often unavailable, and patients expectations of service quality are not met. Most common ailments are therefore treated in the home, and most people die at home (Weiner, 2003). Thus, home-based care is expanding rapidly in all countriesin developing countries as a result of poor services and limited resources and in postindustrial countries as a result of a shift from hospital-based care to home and community care for economic reasons. Caregivers play an increasingly important role in rehabilitation because of this shift (Visser-Meily, Post, Riplogen, & Lindeman, 2004). The great strength of informal caregiving is that there is so much of it; it is the overwhelming source of care in the industrialized world and virtually the only source of care for persons with disabilities in the developing world (Weiner, 2003). In all countries, families have always been, and remain, the major providers of long-term care. Throughout the world, ethnocultural groups are distinguished on the basis of a common history, a unique language or communication system, and group-held values, beliefs, and practices (Pinquart & Srensen, 2005). These differences also affect the caregiving experience. Ethnic minority caregivers have been found to have a lower socioeconomic status, provide more care, and have stronger lial obligation beliefs than nonminority populations. They also have stronger cultural reasons for providing care, with inuences of gender and age on cultural reasoning moderated by race (Dilworth-Anderson et al., 2005). Gender, age, culture, physical and mental disability, class, and sexual orientation also affect the form, process, context, and meanings of caregiving (Sachs & Labovitz, 2004). Social roles, such as husband or wife and son or daughter, can also determine how persons within a particular cultural group experience their caregiving responsibilities and obligations (Dwyer & Coward, 1991; Harris, 1998; Horowitz, 1985; Sachs & Labovitz, 2004; Weiss, Shor, & Hadas-Lidor, n.d.).

In virtually every way, long-term care is a womens issue. Because of greater longevity, long-term care is primarily needed by elderly women, and because of gender roles, women are overwhelmingly the main providers of both informal and formal care (Weiner, 2003). Much of the caring activity is considered the natural work of women, requiring little or no formal training or skill, performed by women for such reasons as helping others or making the caregiver feel good or because women are believed to enjoy the role of helper (Gilligan, 1982). This perception results not only in the division of the caring work by gender, but also in the unchallenged perception that caring is a natural tendency that does not need any special skills that should be acquired. This perception is often transferred to the informal caring for family members with complex behaviors or conditions as well as to formal caregiving work. In relation to the prole of the care recipients, caregivers who help someone age 50 or older say the main problem or illness the person they care for has is old age (15%) followed by diabetes, cancer, and heart disease. Caregivers who help someone between the ages of 18 and 49 say the main problem or illness the person they care for has is mental illness or depression (23%) (National Alliance for Caregiving & AARP, 2004). Caregivers of children are many times more likely than caregivers of adults to characterize their care recipients condition as a learning or educational issue or mental retardation or developmental delay, and they are at least twice as likely to indicate an emotional or mental condition or a behavioral issue (National Alliance for Caregiving & AARP, 2009). The age of a functionally dependent person and the age of the caregiver are both important from the point of view of the duration of caregiving and its impact on the caregivers life (WHO, 2000). Whether caring for infants, children, or adults with disabilities or for the increasing number of people who become activity-limited as they grow older, the caregiver is an important health component (Pugliese, Ingram, & Edwards, 1998). Although not all people with disabilities are dependent on the services of an unpaid (usually a family member) or paid caregiver, meeting the needs of those who benet from personal assistance cannot be easily separated from the needs of people who provide assistance (Singer & Irvin, 1989).

CAREGIVER ROLE PROFILE

Although one prole does not t all caregivers, a typical informal caregiver in the United States is a 46-year-old woman who has some college education, works, and spends more than 20 hours a week providing care to her mother (National Alliance for Caregiving & AARP, 2004). A higher proportion of caregivers are women (Family Caregiver Alliance, 2005; National Alliance for Caregiving & AARP, 2004, 2009).

CAREGIVING REWARDS AND CHALLENGES

The occupation of caregiving can be a rewarding experience (Moghimi, 2007). Many caregivers are motivated to help by feelings of affection and obligation and by a strong identity with culture, values, and beliefs (Aberg, Sidenwall, Hepworth, OReilly, & Littell, 2004). Numerous sources describe the caregivers experience as rewardingproviding meaning, spiritual satisfaction, companionship, and fulllment in

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giving of self and in helping others (Feeney & Collins, 2003; Sachs & Labovitz, 2004). Caregiving can be associated with either altruistic or egotistic motivations. In being altruistic, one intends to reduce the care recipients distress and improve upon his or her welfare. Egotistic motives include helping others to obtain a feeling of power, receive a reward, or have more social contact (Batson, 1991; Cialdini et al., 1987; Moghimi, 2007; Schroeder, Penner, Dovidio, & Piliavin, 1995). Caregivers overall satisfaction with their occupation was noted to be associated with several components. These factors included the existence of a previous affectionate relationship between the caregiver and the care recipient, fulllment of the occupation of caregiving by ones own initiative, and the ability of the caregiver to maintain some leisure time for self (Lpez, Lpez-Arrieta, & Crespo, 2005). In addition to providing potentially rewarding experiences, caregiving entails many challenges. Caregiving has been found to affect the overall health of the persons providing the care (National Alliance for Caregiving & AARP, 2009). An extensive body of research suggests that providing care to a chronically ill family member can have negative effects on the caregivers psychological health and physical well-being over time (Pinquart & Srensen, 2003; Schulz, OBrien, Bookwala, & Fleissner, 1995). In addition to depression and other forms of psychological distress, reductions in social participation and other indicators of poor quality of life have been found in various caregiving studies (Brummett et al., 2006; Haley et al., 1995; Mausbach, Patterson, & Grant, 2008; Roth, Perkins, Wadley, Temple, & Haley, 2009). Furthermore, although caregivers of children with special needs are younger than caregivers of adults, they give lower ratings to their health (Pleis & Lucas, 2009). Neugaard, Andresen, McKune, and Jamoom (2008) conducted a study structured to understand the public health impact of caregiving on health-related quality of life (HRQoL) using population-level data. They found that caregivers 55 years had a 35% increased risk of having fair or poor health (odds ratio [OR] 1.35, 95% condence interval [CI] 1.28, 1.43) compared with noncaregivers in that age group, whereas caregivers 55 years had a 3% decreased risk in having fair or poor health (OR 0.97, 95% CI 0.92, 1.03) compared to noncaregivers of the same age. In the adjusted models that examined the association of caregiving and healthy days, younger caregivers similarly showed larger decits in both mental and physical HRQoL compared with older caregivers. Additional ndings from this study implied a stronger association with mental HRQoL, suggesting that caregivers mental health is affected more than their physical health from caregiving duties. These results support ndings of two previous meta-analyses that examined the difference between caregivers and noncaregivers in psychological and physical health (Pinquart & Srensen, 2003; Schulz et al., 1995).

In these meta-analyses, caregivers were found to have more of a decrease in psychological health than physical health. Caregiving can be a time-consuming occupation that leaves little room for other family members, social activities, hobbies, and interests. Unsurprisingly, caregivers who are employed often have difculty concentrating on job-related tasks and experience diminished job performance (Curry, Walker, & Hagstel, 2006). In addition, the type of care receiver affects the caregiving challenges. For example, the demands of caring for a child are different than those of caring for an elderly person with dementia. Furthermore, when the care recipient suffers from a mental health illness, the caregiver has to cope with additional challenges not always evident in other types of conditions that require caregiving. The onset of a mental illness in itself is a traumatic and shocking experience for the family. The devastating impact of mental illness on families has been documented consistently by researchers (Marsh, 1999). Emotional reactions to the psychiatric illness of a relative may include fear, guilt, disbelief, denial, sadness, grief, and empathy. Being a close relative of a person dealing with a psychiatric illness may create an especially difcult position for healthy family members, who might suffer from stigma and discrimination simply by being related to a mentally ill person, resulting in negative feelings, depression, pessimistic attitudes, and decreased hope regarding recovery potential of the relative (Leey, 1987). Family caregivers have to deal with burden, both subjective (e.g., personal suffering) and objective (e.g., practical problems and hardships associated with the illness) (Marsh, 1999).

THE MOTHER AS CAREGIVER TO CHILDREN WITH SPECIAL NEEDS

Although caregiving and time providing child care among married, employed fathers are gradually on the rise (Hook, 2006), mothers spend more time providing care, offer more types of support, and perceive more caregiving burden. Subsequently, the behaviors and health of the offspring have a greater impact on mothers than on fathers (Heller, Hsieh, & Rowitz, 1997). Because female caregivers give more care, it is not surprising that women are more likely than men to report experiencing emotional stress as a result of caregiving (40% vs. 26% in the highest levels of stress rating) (National Alliance for Caregiving & AARP, 2004). Furthermore, in contemporary postindustrial societies, there are few social rewards and occasional disapproval when women invest their lives in what is generally perceived as a self-sacricing role with constricted boundaries. Moreover, more resources and services may be available for persons with disabilities, but caregivers often have reduced natural support systems and inadequate respite (Leey, 1997).

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Parents who have a child with a disability such as an intellectual disability or mental illness face a lifetime of caregiving responsibility. Unlike family caregivers for ageing parents or spouses, the length of active caregiving by parents who have a child with a disability often extends for many decades (Kim, Greenberg, Seltzer, & Krauss, 2003). During this long time span, parents must cope with a variety of challenges, including those emanating from caregiving as well as other life stressors that have the potential to produce psychological distress, such as their own health problems and becoming divorced or widowed (Greenberg, Seltzer, Wyngaarden Krauss, & Kim, 1997; Noh & Avison, 1988; Seltzer, Greenberg, & Krauss, 1995). These caregiving and other life stressors may affect mothers in multiple ways, including increasing their experience of caregiving burden, elevating their risk of depression, and diminishing feelings of closeness to their child with the disability (Greenberg et al., 1997). In an era in which the majority of women work, there are doubtless many women whose career aspirations have been truncated by the caregiving needs of a child with a disability (National Alliance for Caregiving & AARP, 2009). In contrast to developmental disabilities that are often evident from birth or early childhood, mental health disabilities typically emerge at a later stage in life. Families with children with special needs tend to limit expansion of the family by limiting childbirth. This reduction stems from mothers recognition that children with disabilities have extensive needs and that to meet those needs and maximize their potential, they need to make strategic choices such as delaying subsequent childbearing (MacInnes, 2008).

UNRECOGNIZED CAREGIVER SKILLS AND KNOWLEDGE

The family caregiver is often the person who spends more direct time than any other person involved in the therapeutic aspects of the recipient of care. The caregiver has the most intensive daily direct contact with the caregiver recipient. Many caregivers lack the knowledge and skills to perform all of the tasks associated with their caregiving occupation (Weiss, 2010). Thus, feelings of prociency and mastery are compromised in regard to the caregiving role. In a focus group conducted with participants who attended Keshet, a course for parents who are caregivers of children with mental health disabilities (described later in this chapter), parents expressed their desire to master the ability to deal effectively with their childs condition. As one mother so eloquently expressed, I wish I were a psychiatrist . . . . Who can treat our children, if not the parents? Its unreasonable that parents shouldnt knowparents have to learn, really learn on an academic level, because parents [m]ake therapeutic decisions. My son respects me when he sees that I know to ask the correct questions, when he sees his parents acting professionally. Caregiving by a family member, especially by a parent, is perceived to be based on natural knowledge. However,

analysis of caregiving as an activity reveals that it involves many levels of performance. Emphasis is typically on the physical requirements of caregiving to various care receiver populations. Although many of the activities related to caregiving demand the use of motor skills, caregiving also involves physical, cognitive, psychological, emotional, and interpersonal components. Because of the changing needs of care receivers, caregiving requires ongoing cognitive processing of thinking and problem solving while doing in the concrete world of real-life situations (Rudick, 1989). It can be complex to nd ways of giving care that will satisfy both the caregivers needs for effective action to resolve situations or achieve goals and the needs of the person being cared for (Hasselkus, 1998). Because caregiving is related to interpersonal relationships, it requires special sensitivity and attentiveness to the care receivers needs. Devotion to the fostering of the care receivers growth and development may cause one to experience the other person both as part of you and as apart from you (Moroney et al., 1998, p. 8). On the interpersonal level, caregiving is not only a skill but also an art. The art consists of developing a mutual interpersonal relationship with someone who needs care and being sensitive to the verbal and nonverbal cues with which he or she communicates emotional and physical needs (Sachs & Labovitz, 2004). An important aspect of caregiving burden is the lack of thorough caregiver training and education from health care professionals, including occupational therapists (Moghimi, 2007). Research on formal caregivers to persons with developmental disabilities found that lack of knowledge and skills results in stress and dissatisfaction in work (Sachs & Giladi, 2010). Caregivers can benet from interventions directed at supplying them with knowledge, support, and applicable tools to make improvements in their caregiving role (Weiss, 2010). Additionally, these interventions should emphasize the need for maintaining and improving caregivers health as well as that of the care recipient. For all of the previously mentioned reasons, ideally, homebased care should be an integral component of all health and social systems. Within this context, caregiver needs should be addressed. To start with, however, at least health promotion, disability postponement, and disease prevention programs should be implemented (WHO, 2000).

HEALTH PROMOTION, OCCUPATIONAL THERAPY, AND INFORMAL CAREGIVING

The prevalence and effects of family caregiving as described previously give emphasis to its public health dimensions. Health promotion has been described as the process of

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enabling people to increase control over, and to improve, their health (WHO, 1986). It is one of the ve intervention approaches of the Occupational Therapy Practice Framework (American Occupational Therapy Association [AOTA], 2002, 2008). As early as the 1970s, calls were made for occupational therapy to become active in health promotion (Weimer, 1972). More recently, the AOTA articulated a role for occupational therapists in health promotion (AOTA, 2001), charging therapists to promote health and wellness in both individuals and communities through engagement in human occupation to promote healthy lifestyles. A public health focus is needed to facilitate wider adoption of health promotion practices in the profession (Mallinson, Fischer, Rogers, Ehrlich-Jones, & Chang, 2009). In the United States, Healthy People is a set of health objectives that provides science-based, 10-year national objectives for promoting health and preventing disease. Since 1979, Healthy People has proposed and monitored national health objectives to meet a broad range of health needs, encourage collaborations across sectors, guide individuals toward making informed health decisions, and measure the impact of . . . prevention activity (U.S. Public Health Service, 1980). Currently, Healthy People 2010 is leading the way to achieve increased quality and years of healthy life and the elimination of health disparities (U.S. Public Health Service, 2000, p. 1). Promoting caregiver health and wellbeing has been identied as a focus area and health objective in Healthy People 2010, under the objective of disability and secondary conditions. Caregiver needs are viewed as a eld to be addressed by public health activities such as health promotion programs.

CAREGIVING AND OCCUPATIONAL THERAPY WITHIN A HEALTH PROMOTION PERSPECTIVE

With every occupation, however acquired, multiple activity demands exist. These demands are physical, cognitive, mental, and emotional functions that are needed to carry out the activity (AOTA, 2002, 2008). It is clear from this review that caregiving is one such multifaceted occupation that has been recognized in the professional literature as being sensitive to potential occupational imbalance (Bass-Haugen, Henderson, Larson, & Matuska, 2005; Baum & Chrtiansen, 2005; Sachs & Labovitz, 2004). Mallinson et al. (2009) proposed areas that need to be addressed while making a paradigm shift from a focus on individuals to a vision of occupational therapy practice that addresses population health. They encouraged occupational therapists to identify the people with health risks, comorbidities, occupational proles, and performance skills and patterns that put them at risk for activity limitations, reduced quality of

life, and health concerns and suggested designing intervention models to treat communities. This proposal is consistent with the AOTA Occupational Therapy in the Promotion of Health and the Prevention of Disease and Disability Statement (Brownson & Scaffa, 2001). Yerxa and Shavrath (1986) further described that occupational therapy can benet all persons. Occupational therapys knowledge base requires an understanding of medical conditions, but it is not the medical condition, per se, that is the greatest signicance; rather it is the occupational nature of the human being. Thus, although our knowledge, in practice, is primarily applied to people who are ill and disabled, the science of occupation and its concern with the work-play continuum, adaptation and competence development, applies to all people, disabled or not (p. 158). Occupational therapists can play a central role in health promotion, including that of caregiver populations within a public health perspective (Figure 5.1). Caregiver interventions, whether in group or individualized settings, that address occupational imbalance and provide caregivers with pathways that can help reconstruct a more balanced lifestyle can contribute to enhanced caregiver wellness and health. Occupational therapists have many professional beliefs and skills that can enable them to structure interventions for family and informal caregivers, including the professions underlying philosophical presumptions that emphasize occupational well-being, client-centered approaches, and expertise in task analysis, to name a few (Weiss, 2010). Fried (2010) views the occupational therapist as a mediating advocate and interpreter of life who can help a person to help him- or herself in spirit, mind, and body, thus restoring the experience of being. The therapists responsibility lies in suggesting a meaningful life and mediating between illness, disabilities, possibilities, and internal concealed powers that a person, in times of stress, can become unaware of. Occupational therapists have an obligation to help caregivers, who are vulnerable to occupational interruption and occupational imbalance, to shape their caregiver occupation in a meaningful and balanced manner. Maintaining balance between physical, mental, social, and rest needs of caregivers is a public health need that the profession of occupational therapy should address.

CAREGIVER INTERVENTIONS
Family interventions can best be viewed as treatments that mobilize family resources rather than treat family dysfunction (Eisler, LeGrange, & Asen, 2003). In prior research, caregivers who were least prepared for their role as caregiver were found to have more problems maintaining their health (Scott, 2005). Programs for family caregivers are usually structured to address

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Figure 5.1 A MODEL OF INTERVENTION FOR OCCUPATIONAL THERAPY WITH THE CAREGIVER POPULATION WITHIN A PUBLIC HEALTH PERSPECTIVE

Population of caregivers

Public health objective

Burden, stress

Lack of training

Occupational therapy

Diminished health and well-being

Individualized/group interventions for informal caregivers

Improved health and well-being

specic needs according to condition and type of disability of the care recipient. Several programs have been found to be benecial for different caregiver populations, such as caregivers of persons with dementia, stroke survivors, children with intellectual disabilities, persons with schizophrenia, and others (Akkerman & Ostwald 2004; Brereton, Carroll, & Barnston, 2007; Brodaty, Green, & Koschera, 2003; Dixon et al., 2001; Eldred & Sykes, 2008; Forster et al., 2009; Gitlin et al., 2003; Glynn, Cohen, Dixon, & Niv, 2006; Hastings & Beck, 2004; Mahoney, Tarlow, & Jones, 2003; Neugaard et al., 2008; Pierce et al., 2004; Pitschel-Walz, Leucht, Buml, Kissling, & Engel, 2004; Sal, Ploeg, & Black, 2005). Although there is strong empirical support for using some form of family intervention with a wide range of conditions (Stratton, 2005), evidence is nonconclusive regarding the effectiveness of family interventions for certain conditions, such as bipolar disorder (Justo, Soares, & Calil, 2007). Dementia, mainly Alzheimers disease, is the illness group for which there are the most caregiver studies. The next most studied groups are caregivers of persons with mental illnesses, head injury, developmental disabilities, cancer, and stroke (Mittleman, 2005). Interventions differ in whether they are conducted with individual families or groups of families and whether they are in vivo, in the home, or out of the home. They also differ in whether the patient is included or excluded, the length of

the intervention, and the phase of illness of the patient at the time of the intervention (Dixon & Lehman, 1995). Public and private programs provide numerous interventions and supports for informal caregivers, although few countries focus on the caregiver in their long-term care policies (Weiner, 2003). In addition to target population and format, the literature discusses different types of interventions and intervention focus for informal caregivers. The focus of these interventions include respite care; education; counseling; emotional support; psychosocial interventions; psycho-education interventions; skills training, such as training in personal care techniques, in use of medical equipment and devices, in accessing services such as tax benets by using information packages; family therapy; crisis management; cognitivebehavioral therapy; recovery; behavioral problem solving; communication skills; time management skills; use of relaxation and stress management techniques; and an emphasis on continuous participation in leisure activities. Most interventions include a combination of various techniques, all in some way relevant to caregiver needs. Although the literature on caregiving is growing, very few Level I studies have been done on family interventions (Mittelman, 2005). The most frequently used intervention strategies focus on some kind of caregiver education or psycho-education (Mittelman, 2005), yet cognitivebehavioral therapy interventions have the strongest empirical support

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(Gallagher-Thompson & Coon, 2007). Examining the literature on family interventions provides a multifaceted picture. Respite care and support groups are interventions in which the participants are relatively passive. These types of interventions are structured around unloading the caregivers feelings of burden, either by respite or by sharing of experiences. Some respite care programs offer temporary relief to those who are caring for family members who might otherwise require permanent placement in a facility outside the home. Several studies have found respite programs helpful in sustaining family caregiver health and well-being (National Alliance for Caregiving & AARP, 2009), avoiding or delaying of out-of-home placements, and reducing the likelihood of abuse and neglect (Abelson 1999; Sherman, 1995; Theis, Moss, & Pearson, 1994). An outcome-based evaluation pilot study has shown that respite may also reduce the likelihood of divorce and help sustain marriages (Wade, Kirk, Edgar, & Baker, 2003). Yet, results from three randomized controlled trials provided no evidence of any benet of respite care for persons with dementia or for their caregivers for any outcome, including rates of institutionalization and caregiver burden (Lee & Cameron, 2004). Support groups offer counseling and emotional support for family caregivers. A review of 29 evaluative studies on interventions for caregivers of the elderly revealed no clear link between participants satisfaction and other important outcomes for caregivers such as improving coping skills, preventing psychological disturbances, increasing caregiver support systems, and improving caregivers ability to care for themselves (Toseland & Rossiter, 1989). Increased social support has been found to have positive associations with caregivers mental and physical health (Markowitz, Gutterman, Sadik, & Papadopoulos, 2003), and professional support was found to reduce caregiver burden in families of persons with mental illness (Neugaard et al., 2008). Moreover, in a study that was conducted with formal caregivers for institutionalized persons with developmental disabilities, the variables that explained caregivers stress and satisfaction were professional support and role clarity, knowledge and skills, autonomy, and work load (Sachs & Giladi, 2010). Other types of interventions include a more active approach by participants, with the expectation of transference of skills from intervention to caregiving situation. Hepburn, Tornatore, Center, and Ostwald (2001) described a study that tested role-training intervention as a way to help family caregivers of persons with dementia appreciate and assume a more clinical belief set about caregiving and thereby ameliorate the adverse outcomes associated with caregiving. They found a signicant positive association among the strengthened mediator; the caregivers having less emotional beliefs about caregiving roles and responsibilities; and the outcome, namely, improvements in burden and depression.

Wilkins, Bruce, and Sirey (2009) assessed the caregiving activities and training interests of family caregivers of medically ill older adults without dementia who receive home health care. They found that family members of these patients provide a wide range of caregiving tasks and have clear interest in improving caregiving skills through training. When examining the developing literature on family caregiving interventions with reference to evidence-based criteria, it becomes apparent that including instructional and educational components is crucial for the success of family caregiver programs. For example, psycho-educationoriented programs prepare families for dealing with a mental illness (Bayer, 1996; Gubman, Tessler, & Willis, 1987; King & Dixon, 1995). These programs provide families with information on the illness, illness management, and community services. Some programs instruct participants on social and cognitive skills such as problem solving and development of communication skills. Additionally, psychosocial caregiver interventions that are individualized and exible and provide long-term support appear to be the most efcacious (Mittleman, 2005). From their point of view, a large majority of caregivers of children with special needs feels they need more help or information about at least one topic related to caregiving (85%), more so than those caring for an adult (77%). Caregivers of children are more likely than caregivers of adults to want information about their own well-being (stress management, family-work balance, time for self); communication (talking with doctors, non-English materials); and child recipient behavior (easy activities, managing challenging behaviors). Consistent with their greater desire for help or information, caregivers of children are more likely to have obtained formal caregiver training (36% vs. 16% caregivers of adults) (National Alliance for Caregiving & AARP, 2009). Several qualitative studies focusing on the caregiving experience (Hogan et al., 2004) and the experience of caregivers in psycho-educational and psychosocial interventions appear in the literature (Chein, Norman, & Thompson, 2006; Golberg-Arnold, Fristad, & Gavazzi, 1999). Chein et al. (2006) identied positive themes attributed to the family intervention experience, such as positive personal changes, enhanced self-identity, acceptance of the caregiving role, and positive experience of the mutual support found within a group, such as empowerment.

CAREGIVER INTERVENTIONS IN OCCUPATIONAL THERAPY

Moghimi (2007) examined the role of caregiving and its implications for the profession of occupational therapy. She called for incorporation of the professions philosophical foundation, evolving science, holistic approaches, and treatment techniques as part of training programs for caregivers. Moghimi

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viewed empowerment, a client-centered focus, cultural diversity, and health literacy as part of the basic tenets of occupational therapys education and practice. In her opinion, caregivers can become more equal members of the health care team, and more satised and successful in caring for themselves, by further development and focus of the profession. Although the literature on caregiver interventions by occupational therapists is sparse, several studies have focused on this area of practice. Programs developed by occupational therapists typically do not include respite and psychosocial support but rather a more active approach, one that encourages transferring of skills acquired during intervention to the caregiving situation. Occupational therapists also address the caregiving issue in specic caregiver populations and interventions. For example, in early intervention with children, they stress modeling or joint interaction with children to create indirect opportunities for caregivers to learn (Colyvas, Brook Sawyer, & Campbell, 2010). For adults, occupational therapists often design programs that include intervention with care receivers and caregivers. Gitlin, Corcoran, Winter, Boyce, and Hauck (2001) conducted a randomized controlled trial to assess an intervention for family caregivers of patients with dementia. In this study, 171 families were randomized to an intervention group or a usual-care control group. The intervention involved ve 90-minute home visits by occupational therapists that provided education and physical and social environmental modications. The researchers compared nine outcome variables at baseline, and 3 months after baseline, they measured three variables specic to the functioning of the person with dementia and six specic to caregiver well-being. Compared with controls, intervention spouse caregivers reported reduced upset (P 0.049), women reported enhanced self-efcacy in managing behaviors (P 0.038), and women (P 0.049) and minorities (P 0.037) reported enhanced self-efcacy in managing functional dependency. Graff et al. (2008) found that training caregivers in coping skills and supervising skills for older adults with mild to moderate dementia resulted in an improved sense of competence for caregivers. Occupational therapy improved patients daily functioning and reduced the burden on the caregiver, despite patients limited learning ability. Effects were still present at 12 weeks, which justies implementation of this intervention. The main cost savings from this program were from reduced informal care. Community occupational therapy was found to be a successful and cost-effective intervention for persons with dementia and their caregivers. Furthermore, it is likely that much of the sustained benet of occupational therapy at 12 weeks can be attributed to caregivers application of learned strategies (Hirsch, 2007).

In examining caregiver perceptions of occupational therapists working with persons with Alzheimers disease, Toth-Cohen (2000) made four critical recommendations for occupational therapists. They needed to (1) join forces with patients, families, and other professionals; (2) recognize the knowledge of others; (3) consider the family point of view; and (4) comprehensively meet client needs in the home environment. She suggested that such actions would do much in ultimately alleviating caregiving burden. They would also contribute to improved quality of life for clients and their families through a broader and more holistic health care program. Levy and Burns (2005) emphasized the importance of caregiver assessment and involvement in developing effective treatment plans for people suffering from cognitive decline along the spectrum of settings: acute care, sub-acute care, and the community. She suggested referring family and caregivers to occupational therapy services at the beginning stages of dementia for education, made recommendations concerning placement issues, and offered guidance regarding appropriate living environments. Baum (1995) identied the importance of caregiver training in the accommodation of executive decits to sustain higher levels of activity for persons with Alzheimers disease. A cognitive educational intervention program based on positivistic cognitive communication and recovery for parents of children with mental health illnesses contributed to improved attitudes in knowledge, beliefs, and self-action items of participants (Hadas-Lidor, Hasdai, & Jarus, 2006). Another study that focused on the hopefulness of parents pointed to a signicant change in feelings of hopefulness toward the affected family member after course completion (Redlich, Hadas-Lidor, Weiss, & Amirav, 2009). This intervention, called Keshet (rainbow in Hebrew), is discussed in detail later in the chapter. Based on the evidence from the literature, ideally, a family caregiver intervention would Mobilize family resources; Contain educational and instructional components; Include cognitivebehavioral therapy components; Include psychosocial components, which are exible and individualized; Provide social and professional support; Relate to caregiver well-being; Use modeling of professionals to enhance caregiver performance; Provide instruction on accommodation of cognitive and executive decits of care recipients; Join together forces of clients (patients), families, and other professionals; Address communication; and Provide an empowering setting for participants.

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The Keshet model, a cognitive educational intervention for family caregivers of persons with mental disorders, is introduced next. This model attempts to address and include the majority of the components mentioned previously as being potentially central to a successful family intervention.

Communicating Cognition: A Family Intervention in Mental Health Applicable to Other Populations

Families of persons with mental illness want and need to be involved in caregiving but lack the skills and knowledge of experienced therapists to deal with the difcult situation imposed upon them (Kuipers, Leff, & Lam, 2006). One of the crucial components that denes a successful therapeutic encounter, or that gives support to the prediction of successful intervention, is the rapport established between the therapist and the client. Constructive communication skills are one of the therapists toolkits for successfully achieving therapeutic goals (Gingerich & Mueser, 2007; Kuipers et al., 2006; Ryan, Epstein, Keitner, Miller, & Bishop, 2005). One way to improve communication abilities is by consciously giving thought to the interactive components of verbal (and nonverbal) interactions. According to the DCI theory (see detailed review in Chapter 15), this can be accomplished with the use of Feuerstein et al.s (1980) mediated learning experience (MLE) parameters (Weiss, 2010). Feuersteins structural cognitive modiability (SCM) theory (Feuerstein et al., 1980; Feuerstein, Rand, & Hoffman, 1979; Feuerstein, Rand, & Feuerstein, 2006) maintains that cognitive modiability can be enhanced through the use of MLE. DCI takes this a step further by maintaining that MLE can be used as a methodology to analyze communication, thus enabling a person to plan in advance or analyze encounters that include a verbal component together with ones that contain body language as a central component. Keshet has taken this idea even a step further by using occupational therapy expertise in task analysis, applying it to communication analysis, and structuring this application as an intervention technique to improve family caregiver communication skills. Family caregivers who have been exposed to this way of thinking have reported improved communication, knowledge, and hope. For example, the mother of a son with schizophrenia for many years expressed I was patient with him before as well, but now I really understood that this is his truth, and from this understanding, I have to help him nd meaning, from where he is at, that is, truly understanding another person can promote hopefulness. Today, I understand what Im doing, and I can do it even better . . . . We spoke about being attentive to meaning, [and] I have a meeting today with my son with

the doctors and I know that I will make contact with him in regard to what is meaningful to him. I think that the essence of the course is in the belief in the ability to change. This hope for recovery can really not be taken for granted. We often believe in the proposition that the person is sick, and thats that. Here, we were exposed to many things that can be accomplished differently, one step at a time, with an aspiring belief that a change is possible. During our last group meeting, each one of us spoke, and we all had experienced little positive changes happening parallel to the course as if with no connection to the instruction we received. But in almost all of the families, a positive process took place, together with our faith and hope that recovery is possible. I think that that is the center of all. Occupational therapists expertise lies in their knowledge of occupation and of how engaging in occupations can be used to support health. Analysis of occupational performance includes analysis of performance skills, specically, cognitive skills and communication and social skills, within performance patterns. Therapists use task analysis abilities to try to understand a clients lacking or existing cognitive skills and intervene using internal and external learning strategies to compensate for decits. Occupational therapists must be aware of the need to use metacognition with clients to promote occupation and participation. Knowledge translation can be applied as a means of providing caregivers with practical tools traditionally used by therapists, to help them translate components proven to be effective in research and therapeutic practice to the family caregiving surroundings. Knowledge translation is a dynamic and iterative process that includes synthesis, dissemination, exchange, and ethically sound application of knowledge to improve health, provide more effective health services and products, and strengthen the health care system (Sudsawad, 2007; WHO, 2005). Knowledge translation has gained visibility among health care professionals and between researchers and knowledge users. The loose connection between research and clinical practice has revealed itself in recent years, demanding that strategies that accelerate the use of research ndings run alongside knowledge creation agendas. To achieve evidence-based health care means to also pursue evidence-based implementation (Grimshaw, 1998, p. 20). Bridging the gap is a phrase that refers to the 10-year gap between the time an evidence-based practice is dened and published and its clinical application. An additional gap existsthat between clinicians knowledge and caregiver and consumer knowledge of management of their illness and issues surrounding their special individual health condition. This gap is bridgeable, and the Keshet model presents a direction

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Figure 5.2 KNOWLEDGE TRANSLATION IN ACTION

Professional knowledge & experience

Research Ten-year gap

Gap Caregiver needs & knowledge Care receiver needs & knowledge

Practice

Caregiver intervention to bridge gap

for bridging the gap for caregivers (Weiss, 2010). This model is a way of putting health promotion into practice (Figure 5.2).

Four central themes of Keshet

1. Development of positive cognitive communication skills
The development of positive cognitive communication skills is based on Feuersteins SCM and MLE theories (Feuerstein et al., 1979, 1980, 2006) and DCI (Hadas-Lidor & Weiss, 2005). SCM focuses on using MLE to develop and attain cognitive modiability. Feuerstein dened cognitive modiability as the ability to benet from a learning experience and to subsequently change ones cognitive performance in similar or more advanced learning situations. According to the SCM theory, cognition is a readily accessible avenue for environmental intervention (Feuerstein et al., 2006). The family environment, identied as an inherent part of the recovery process (Liberman, Kopelowitz, & Ventura, 2002) is essentially a primary social environment in which a persons cognition and cognitive modiability develop. The basic assumption in the SCM theory is that the major factor causing cognitive differences among people is the MLE. This process is an interactional one in which parents, substitute adults, or peers interpose themselves between a set of stimuli and the learner and modify the stimuli for the developing child (Tzuriel, 2001), for example. Feuerstein and Feuerstein (1991) outlined 12 parameters that describe the quality of the MLE. The three crucial and universal parameters of the MLE are (1) intentionality and reciprocity, (2) transcendence, and (3) mediation of meaning (see Chapter 15). Competence, another parameter, evokes a sense of reward and elaborates the interpretation of success. It has been adopted by Hadas-Lidor (1996) as being crucial to the success of the MLE, especially in the eld of mental health, because the latest research in the eld of recovery has shown that a feeling of competence is a dominant feature of the recovery process. In this process, the therapist plays a crucial

Keshet
Keshet is an intervention designed for family caregivers of persons with mental health disorders (Hadas-Lidor et al., 2006). It is an instructional, structured, standardized cognitive educational course, conducted in academic environments, that helps family caregivers appreciate and develop skills for positive communication (Hadas-Lidor, Weiss, & Redlich, 2008). It is based on several theoretical entities: Feuerstein theory of SCM and MLE (Feuerstein et al., 1979, 1980, 2006); DCI (Hadas-Lidor & Weiss, 2005) (a detailed outline of these theories can be found in Chapter 15), and recovery (Anthony, 1993; Deegan, 1996; Liberman & Kopelowitz, 2005). One of the central aspects of Keshet is knowledge translation providing caregivers with practical tools traditionally used by therapists to help them translate components proven to be effective in therapy to everyday life. The Keshet course does not focus on illness and illness management. Rather, it is based on a universal outlook on cognitive modiability and the use of mediation for positive communication applications. This outlook differs from that of family interventions based on the association between psychoeducation and the concept of expressed emotion, which implies blame on families for the ill relatives relapses (Solomon, 1996). Donovan and Corcoran (2010) claimed that most occupational therapy interventions for caregivers are designed to reduce negative consequences of caregiving by building skills to manage problem behaviors and dependence. However, therapists may be missing an opportunity to provide interventions that directly help caregivers emphasize and act on positive aspects of care. This approach is in line with the concepts of Keshet.

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role in establishing in the client the feeling of competence (Lachman & Roe, 2003). Basically, Feuersteins emphasis is educational and didactic. SCM and MLE theory do not relate directly to communication, dialogue, and emotional aspects of the interactional context, although the MLE generally involves verbal communication and enhances it. In addition to the MLE as a basis for cognitive modiability, it can be viewed as a positive way of communication. Using the MLE as a measure for communication within a family in which one of the members has a mental illness presents a recovery-oriented positivistic approach to family communication. The main area of DCI application is therapeutic relationships in health-related elds, with a direct emphasis on emotional-related issues and the way they affect cognitive development (Hadas-Lidor & Weiss, 2005; Chapter 15). DCI views the client as an equal partner in the therapeutic process. In DCI, not only do therapists work together with clients to select methods and goals, but they also convey to clients the central concepts of cognition, the steps involved in cognitive development and processes, and the clinical reasoning behind intervention techniques. Clients are exposed to the ways the cognitive communication skills based on mediation can enhance learning, adaptability, and recovery. This attitude leads to the empowerment of everyone involved in the therapeutic process (Hadas-Lidor & Weiss, 2007). DCI also incorporates intervention principles based on the cognitivebehavioral model (Beck, A. T., 1975; Beck, J. S., 1995; Vallis, 1991). In this model, it is not the situation that directly affects how a person feels emotionally but rather his or her thoughts in the situation (Beck, J. S., 1995). Thoughts, emotions, and actions are examined and reevaluated, thus enhancing the therapists role in encouraging, promoting, and enabling change. Traditionally, in cognitivebehavioral therapy only the therapy recipients way of communicating, interacting, feeling, and thinking is analyzed. However, it is crucial to look at all partners involved in an encounter, although the focus here is on supplying the mediator with the tools for change. In addition, the dissemination of this type of knowledge to family caregivers in mental health can also be viewed as knowledge translation. These components support the process of caregivers becoming critical thinkers, which is identied by Mogahimi (2007) as an asset that occupational therapists can help caregivers develop.

these MILEs takes place in either small groups or in front of and interactively with the entire class. The moderators react to the written descriptions, commenting on various communicative aspects of the episodes depending on the stage of learning that the participants have reached (see Box 5.1). All descriptions are returned to participants with analytic commentary, and during every course of Keshet, several MILEs serve as exercises for small groups or the whole class. Participants claim that MILEs facilitates their learning and understanding of the theories taught in class and are benecial in applying links between theory and practice (Shor, 2008). The idea to implement the use of MILEs in Keshet originated in supervision workshops intended for occupational therapy students. Students were requested to hand in written dilemmas encountered during their eldwork placements. It became apparent that the dilemmas had unique potential as written material describing real-life situations and sources of conict. One of the mechanisms that try to explain why expressive writing works is cognitive processing: It is likely that the development of a coherent narrative helps to reorganize and structure traumatic memories, resulting in more adaptive internal schemas (Pennebaker, 2004; Sloan & Marx, 2004; Smyth & Helm, 2003). Writing is a form of expression that involves presence, structure, and substanceelements that are not always integral parts of speech. Writing demands doing not just talking and conversing. Occupational therapy, as a doing profession, can benet from the use of this expressive mode to promote acquisition of therapeutic goals.

3. Cognitive task analysis

Most people are aware of the visible steps needed to carry out a task, but they are usually unaware of the cognitive processing and effort that go into the smooth carrying out of even everyday tasks and activities. The cognitive components needed for completing tasks are subtle and invisible. However, family caregivers in Keshet have a better understanding of what is involved for a family member with a mental illness to, for example, just get up and get organized in the morning. The cognitive components of this seemingly automatic routine include comparisons, classifying objects, spatial organization, making choices, eliminations, speed processing, sequencing, decision making, problem solving, the need to attend, and concentration. Therefore, even what are considered simple tasks for a person without mental illness may become overwhelming for someone with limited cognitive capacities as a result of mental or emotional stress. The instruction of task analysis focuses in Keshet primarily on cognitive components. For example, caregivers were asked what the steps are for setting a table, and the answer relayed the concrete motions of setting a table: getting plates from the

2. Use of meaningful interactional life episodes to enhance learning and communications development
One of the central methods used in Keshet to promote knowledge translation and bridging the gap is (MILEs). MILEs is a written description of an actual life experience involving a dialogue between at least two people (Box 5.1). Analysis of

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Example of MILEs
Participants: My daughter and me Context: Phone call Time: I dont recall Description of the episode: I called my daughter on the phone. I asked her, How are you? She replied, The same, not well. Nothing helps me to get over this depression. I dont have any strength, and I dont want to go on living. I replied, Youre not making enough of an effort to get out of it, youre not keeping yourself busy with things you enjoy that will help you overcome the depression. She replied, OK, you dont understand, and she slammed down the phone. I felt guilty that I hurt her, that I dont understand that shes incapable of leaving her house and doing things that she enjoys. Analysis 1: Different cognitive analysis techniques are used in Keshet to help gain insight and develop procient pathways to deal effectively with communication difculties. Using different perspectives, one can point out that the mother and daughter understood the situation differently, which is why they couldnt understand each other. Different points of view tell different stories, which enables us to show the differences between one perception and another. These differences can cause misunderstanding in conversations. Different standpoints are legitimatethere isnt always a right and a wrong. This idea is important for broadening participants perspectives on various topics under discussion.

Example of MILEs

Analysis 2: Another technique analyzes thoughts, emotions, and actions. Froma thought-focused perspective, we can try to understand the mothers state of mind: What are her thoughts? What are her emotions? What did she do? How did she act? This discussion is followed by an identical analysis of the daughter. The following shows the analysis of mother and daughter: Mother Thoughts: Telling my daughter what she should be doing will be helpful. Emotions: Fear, sadness, pain, frustration, anger, loneliness, and guilt. Actions: Im trying to help her get out of the depression. Daughter Thoughts: My mother doesnt understand me. Emotions: Frustration, anger, pain, fear, loneliness. Actions: I slammed down the phone. This analysis promotes the understanding that the emotions of the mother and daughter are similar, even thoughon the surface it appears that no similarities exist between them. These emotional similarities are commonly observed in many of the MILEs handed in during Keshet groups. Consequently, Keshet participants are encouraged to share these identical emotions with their family members. This sharing of emotions helps to overcome negative emotions and establishes awareness of reciprocal feelings, thus making the encounter less complicated.

5.1

cupboard and setting them on the table. The cognitive skills necessary for setting the table or any other task are usually automatic and taken for granted, and caregivers may not be aware of how complex everyday activities can be for the care recipient. The Keshet instructor noted that setting the table involves making choices and decisions about what cutlery or tablecloth to use, analyzing visual stimuli, using spatial organization and time, comparing, sorting, and classifying. This analysis provided caregivers with a better understanding of cognition and the relevance of the cognitive impairment on the ability of the cognitively impaired care recipient to carry out everyday life activities and participate in occupations.

As one Keshet participant observed, [Certain tasks] used to be automatic, [but now] we think about what we are doing. Its not automatic anymore. Another Keshet participant relayed the story of how she used the knowledge gained in Keshet to help her daughter condently take the bus: My daughter has to travel by bus from one city to another. She developed a fear of traveling on her own over the last few years. I didnt understand why my 29-year-old daughter couldnt take a bus ride on her own, and she didnt explain to me exactly

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what her difculty was. But, I realized I had to use a cognitive approach to analyze and understand precisely what her problem was. So, I went on a bus ride with her and discovered that she was afraid of missing her stop. So, we simply went over the steps of how it should be done with no mishaps, and then she traveled her route a couple of times by herself, without my help. Once I understood that her difculty was orientation in space, it made it suddenly very easy. And this is what Ive learned [through Keshet]: At rst, why she was having a problem didnt cross my mind, and she didnt explain it to me, but then I understood this small componentshes afraid of missing her stop. And after we went over the bus route together, she remembers. Thats it, no more need for help from me.

example, parents as a focus of intervention are encouraged to develop interests and make time for activities they consider to be important. For example, one parent in Keshet wrote: I feel it as a type of empowerment. Not to let the illness despair me . . . its a type of human experience. And to remember all the humanistic principles, which at timesdue to the anger, disparity, and the wearing down from coping with everythingdisappear, and to have a very humane experience. Thats what we parents received here . . . to not let the whole household sink into the abyss . . . . Every member of the family should search, should remember to go to the theatre, the movies, life goes on, even more life. At a recent conference on recovery in mental health, one speaker called for acknowledging that not only is recovery a relevant process for people with mental health conditions, but it is also a universal phenomenon (Friedli, 2010). Figuratively, the following denition of recovery can be easily applied to every persons life journey: Recovery is being able to live a meaningful and satisfying life, as dened by each person, in the presence or absence of symptoms. It is about having control over and input into your own life. Each individuals recovery, like his or her experience of the mental health problems or illness, is a unique and deeply personal process (Scottish Recovery Network, 2009, p. 1).

4. Instruction of recovery concepts

Initiated within the eld of mental health with implications for many other populations, the vision of recovery is based on the belief and recognition of the person as a whole, with hopes, dreams, aspirations, and accomplishments. The illness is just one part of the person. This concept differs from the approach held by many in the medical health services, who tend to view the illness and not the person suffering from it (Deegan, 1990, 1996). Recovery from mental health views illnesses as a process and journey toward a satisfying and meaningful life despite the illness, instead of recovery as a cure (Anthony, 1993; Deegan, 1996; Liberman & Kopelowitz, 2005). Recovery places an emphasis on therapeutic relationships, demanding that providers collaborate closely with each consumer to discover his or her unique path to healing. Although coping with mental illness may be a lifelong experience, family members can experience their own recovery journey, just as their family member with the illness can experience recovery (Davidson, Harding, & Spaniol, 2005, 2006; Spaniol, Zipple, Marsh, & Finley, 2000). Keshet makes use of client-centered concepts (Law, Baum, & Baptiste, 2002) and shares common dimensions with recovery concepts, such as sharing, empowerment, and hope (Anthony, Cohen, Farkas, & Gangne, 2002; Deegan, 1996). These concepts promote the therapists ability to actively change his or her perception of the client from passive to active, and to embrace a perspective that encompasses illness within a normal healthy lifestyle. Family interventions, intended primarily to reduce burden of care on families and educate them about psychiatric illness and principles of treatment, can benet from the inclusion of a recovery perspective that emphasizes and supports a persons potential for growth, despite illness, thus putting a healing process of the family caregiver into motion (Glynn et al., 2006). For

Two models to elucidate Keshet

Two models (Figures 5.3 and 5.4) show the relationships between various theories (mentioned briey above), interventions, and concepts used in Keshet. The rst model (see Figure 5.3) elucidates the relationship between occupational therapy and SCM through the development of the DCI principles. Consequently, DCI enables professionals, caregivers and care receivers exposed to the theory to analyze communication, teach, develop, and change communication skills through MILEs. For this process to occur, professional core concepts must be used interconnectedly: task analysis from the eld of occupational therapy and MLE from SCM. The model displays the various strategies used to analyze the MILEs: cognitive behavioral theory, MLE, different points of view, recovery, transference and counter-transference, and guiding questions. The model displays the underlying belief behind DCI and SCM, that is, that all persons have the ability to learn and change. The second model (see Figure 5.4) illustrates how professional and parental Keshet moderators use recovery concepts and DCI and MLE principles to bridge the gap, using knowledge translation to effectively promote caregivers communication capabilities, and thus, their health and well-being.

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Figure 5.3 FROM OCCUPATIONAL THERAPY TO COGNITIVE COMMUNICATION: DCI THEORY

Occupational therapy
DCI

SCM
MLE

Cognitive modifiability

Task analysis

Communication analysis Surface level interpretations, below surface level, i.e., typical role typing of communication

MILEs

CBT

Cognitive Communication analysis

Guided questions

Different points of view

Recovery elements

Transference, counter transference MLE

Key SCM, structural cognitive modifiability MLE, mediated learning experience DCI, Dynamic Cognitive Intervention CBT, cognitivebehavioral therapy MILEs, meaningful interactional life episodes

Figure 5.4 KNOWLEDGE TRANSLATION FROM PROFESSIONAL COMPETENCY TO CAREGIVER COMPETENCY: THE KESHET EXPERIENCE

Occupational therapy & other professional competency, & parental Keshet moderator competency

Cognitive communication using MLE & DCI principles

Recovery

Caregiver competency & well-being

Key MLE, mediated learning experience DCI, Dynamic Cognitive Intervention

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Keshet research evidence

Since Keshet was initiated by Hadas-Lidor in 2001, more than 300 family caregivers have participated in the 45-hour biweekly program, with one to two participants from every group becoming facilitators of future Keshet groups. Seventy-ve percent of the participants are women, and 93% of participants are parents. Average education is 14.7 years. Regarding housing of family members with a mental illness, 46% report that the family member resides with them. Keshet courses have taken place in Haifa and Tel Aviv and have also been inaugurated in special communities, such as within the culturally closed community of ultra-orthodox Jewish mothers. Initial research has been conducted on Keshet. The participants of the rst Keshet group (n 11) completed an attitude questionnaire relating to knowledge, beliefs, and behavior in relation to their children, before and after the course. Participants reported a higher level of knowledge, a change in beliefs, and an improvement in their behavior after the completion of the course (Hadas-Lidor et al., 2006). An additional quasi-experimental study (Redlich et al., 2009) examined whether the program effectively increases hope in family members in regard to themselves versus their hope for their relative with an illness. Keshet was found to signicantly increase hope in families concerning the person with mental illness, while decreasing the gap between hope of family members regarding themselves and the affected person. The program was found to contribute to the increase of the families hope in the recovery journey of family members with mental illness. Shor (2008) conducted an evaluative single case study of ve Keshet courses (n 88) that focused on the perceived value of participation in Keshet for caregivers. One of the central conclusions of this study relates to the changes in the ways participants perceive and think about diverse life situations with which they have to cope. Participants implied that analysis of MILEs was benecial and useful in applying links between theory and practice. Among the changes experienced following

Keshet was a feeling of improved communication with the family member with mental illness. Evaluation questionnaires of Keshet lled out by participants at the conclusion of the courses pointed to a perceived change in ability to cope with different situations (78.4% reported a high to very high capability in their belief in their ability to promote change). Currently, additional research projects are being carried out on Keshet to strengthen the intervention as an evidencebased practice developed on rm theoretical grounds.

SUMMARY
The focus of the Keshet model is family caregiver health promotion and well-being. The model has been implemented successfully with parents of children with psychiatric illness, attention decit hyperactivity disorder, and learning disorders. It a generic intervention that, with adaptations, can be implemented for caregivers of persons with other disabilities. This intervention is still under development, and it is in the process of becoming an evidence-based practice as dened by U.S. The Substance Abuse and Mental Health Services Administration.

CONCLUSION
Informal caregiving is a growing worldwide phenomenon and a social necessity that has the potential to cause occupational imbalance. Structuring interventions for family caregivers is crucial and can be viewed as a public health priority. The importance of emphasizing the familys role in the process of consumer recovery can be enhanced by broadening the research focus to include systematic changes that promote making family members a part of the treatment team (Glynn et al., 2006). Occupational therapists have a professional obligation to address the various aspects of caregiver needs.

REVIEW QUESTIONS
1. 2. 3. 4. In what way is the role of caregiving an occupational therapy intervention goal and a public health agenda? What are the rewards and challenges of the caregiving role? How does cognition potentially relate to the various aspects of the caregiving perspective? How does the Dynamic Cognitive Intervention model encompass an intervention suitable for caregiving populations?

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ACKNOWLEDGMENT
Material in this chapter is partially based on the rst authors doctorate proposal being carried out at Haifa University under the supervision of Dalia Sachs, PhD, OT, and Avi Weitzman, MD.

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