STIGMA IN ACCESS TO ANTIRETROVIRAL

TREATMENT IN ABUJA, NIGERIA: THE

IMPORTANCE OF SOCIAL CONNECTIONS

KINGSLEY OTURU

A thesis submitted in partial fulfilment of

the requirements for the degree of Doctor
of Philosophy

QUEEN MARGARET UNIVERSITY

2013

Abstract
Access to anti-retroviral drug (ARV) therapy in Nigeria has been a big challenge. Despite the
fact that ARVs have been demonstrated to improve quality of life, reduce AIDS prevalence
and AIDS deaths, many people in Nigeria still do not have access to ARV therapy. At the
time this study was started, the ARV access rate was 16.6%. This Grounded Theory study
examines the experiences of HIV positive people accessing ARVs in Abuja, Nigeria. 30
Patients living with HIV/AIDS were interviewed in an iterative manner. The results of the
Grounded Theory analysis were triangulated with the documentary analysis of preliminary
and secondary literature. As reported by the participants of the study, patients initially found
it very difficult to access treatment. Stigma emerged as the main concern of the research
participants. Although access to anti retroviral treatment has improved over the years,
different forms of stigma still pose important barriers to access in this group of participants.
The results of this research suggest that stigma occurs at individual, familial, community,
organisational and national levels. The main concern of research participants was resolved
mainly through the use of social connections. The contribution to knowledge is the
development of the Social Connection Theory. 5 main stages that patients pass through
when they attempt to access ARVs were identified in this study. During each of these
stages, the patient may experience barriers through stigma or other forms of structural
issues such as poverty. They may also move from one stage to another through social
connectors who assist them to access ARVs. In the Social Connection Theory, it is argued
that in African settings, social connectors play a vital role in influencing the way that patients
access antiretroviral treatment. Social connectors are social acquaintances of the patient
who help shape their health care seeking decisions. They play a vital role in supporting and
linking HIV positive persons to where they can access ARVS. Social connection serves as a
useful tool for empowering HIV patients to overcome different obstacles and access
treatment. However, these processes do not occur in a structural vacuum. Structural factors
such as religion, gender, politics and the economy were also found to shape the way stigma
is experienced in Nigeria and how people access HIV treatment. To improve access to
ARVs, it is suggested that while taking cognisance of structural forces, multidisciplinary
strategies should be developed that integrate social connectors at different critical points in
the access continuum.

Declaration
I hereby declare that this submission is my own work and that to the best of my
knowledge, it contains no material previously published or written by another person
nor material which to a substantial extent has been accepted for the award of any
other degree of the university or other institute of higher learning, except where due
acknowledgement has been made in the bibliography, references and text of the
thesis.

Student:
Kingsley Oturu

Acknowledgement
I have to give thanks to God through my Lord Jesus Christ for seeing me through the
PhD process. I will like to thank the Holy Spirit for strengthening me and giving me
the inspiration and wisdom to complete the PhD. This thesis is not the work of only
one person. A lot of people put in a lot of effort and support to ensure that it is a
success.
Special thanks to my Director of Studies, Oonagh OBrien for her constant nudging
and encouragement. I must appreciate my second supervisor, Prof. Barbara McPake
for her critical analysis and direction. Both supervisors are from the Institute for
International Health and Development, Queen Margaret University, Edinburgh,
Scotland, United Kingdom). Dr Philomena Ozo-Esson (Head of Sociology
Department, University of Abuja, Nigeria) is acknowledged for her supervisory
support while I was in the field in Nigeria collecting and analysing the research data.
I have to also thank Dr Pat Matemilola for his help in the field.
I appreciate Dr Tom Carline from the School of Health Sciences (QMU) for his
objective analysis of some of my drafts. Carola Eyber is acknowledged for her
independent advice and encouragement. Other lecturers at the Institute for
International Health and Development who need to be acknowledged include
Margaret Leppard, Suzanne Fustukian, Alison Strang and Bregje de Kok.
I need to thank Erza, Sulisia for helping me in designing some of the tables and for
her political insights. Gael Robertson is appreciated for her assistance on reflecting
on action. I need to thank my colleagues for also providing support during the PhD
process. These include Elvis Gama, Jimmy-Gama Dixon, Araujo Edson, Abe Kimiko,
Bermudez Keven, and Kachale Blessings. I appreciate Jirawattanapisal Thidaporn
for her assistance in the quantitative analysis of the socio demographic features of
the research participants. Professor, Peter I. Ozo-Esson (A Nigerian Professor of
economics) is appreciated for his insights on the economic problems of Nigeria. I
also appreciate Olga Golichenko for her assistance in editing the early drafts of the
research proposal. I would like to thank Jardine Kyoko and Janice Burr for their
administrative support during the research process.

Special thanks to Queen Margaret University for offering me a full PhD scholarship.
QMU also provided a research grant for training and funding for dissemination of
results in seminars and conferences. I have to also thank UK Department for
International Development (DFID) commonwealth shared Scholarship scheme that
provided the commonwealth scholarship for my masters at QMU. I am grateful to
Barney Glaser, Judith Holton and Helen Scott of the Grounded Theory Institute for
their useful support on the practicalities of doing grounded theory. Faith Mission
Bible College Edinburgh, is appreciated for their Theological lectures and access to
religious library books on Theology and African traditional religion.
I must thank my parents, Rev. Dr Mark Oturu (dad), Mrs Kate Oturu (mum) for their
support. I need to thank my siblings Chris Oturu, Nkiru Azodoh, Dave Oturu and Alex
Oturu for their support and prayers. My Uncle Gabriel Azubuike, Aunty Benedicta
Azubuike (for their books on financial management and introduction to sociology
which were useful in the thesis). My cousins Ugonne, Chidera and Junior are also
appreciated for providing a safe and stress free haven for me to rest in America
whenever I was on my annual leave. Special thanks have to go to my wife, Mrs.
Glory Anulika Oturu for her support and sacrifice during times when I had to
transcribe and read many publications. I am also grateful to my son (Joshua Oturu)
for his joyful distractions during the research.

Dedication
This thesis is dedicated my Lord, King and Saviour Jesus Christ, the Anchor of my
soul, the Author and Finisher of my Faith. The Way, Truth and the Life (John 14:6).

International Award linked to current PhD Research

New Investigator in Global Health Scholarship Award 2011 (NIGH):
A competitive scholarship prize awarded by the Global Health Council (USA) based
on global relevance of the PhD study (2011)
'This year we received a large and robust pool of applicants and, as a result, the
selection process was particularly competitive. You should be proud of your
achievement and the high quality of your work and submission'. Global Health Council USA

Acronyms and abbreviations

AIDS ACQUIRED IMMUNE DEFFICENCEY SYNDROME
ARH ADOLESCENT REPRODUCTIVE HEALTH
ART

ANTI-RETROVIRAL THERAPY

ARV

ANTIRETROVAL DRUGS

BCC

BEHAVIOUR CHANGE COMMUNICATION

CBOS COMMUNITY BASED ORGANISATION

CIDA CANADIAN AGENCY FOR INTERNATIONAL DEVELOPMENT
DFID UK DEPARTMENT FOR INTERNATIONAL DEVELOPMENT
FBO

FAITH BASED ORGANISATION

FP

FAMILY PLANNING

GFATMGLOBAL FUND TO FIGHT TUBERCULOSIS, AIDS AND MALARIA

HIV

HUMAN IMMUNE DEFICIENCY VIRUS

IIHD

INSTITUTE FOR INTERNATION HEALTH AND DEVELOPMENT

MOH MINISTRY OF HEALTH

NACA NATIONAL ACTION COMMITTEE ON AIDS
NDH

NATIONAL DEMOGRAPHIC AND HEALTH SURVEY

NGO NON-GOVERNMENTAL ORGANISATIONS

PEPFAR PRESIDENTS EMERGENCY PLAN FOR AIDS RELIEF
PLWHA PEOPLE LIVING WITH HIV/AIDS
PMCT

PREVENTION OF MATERNAL TO CHILD TRAMISSION OF HIV

QMU QUEEN MARGARET UNIVERSITY EDINBURGH SCOTLAND

RHS

REPRODUCTIVE HEALTH SERVICES

STIs

SEXUALLY TRANSMITTED INFECTIONS

UNAIDS UNITED NATIONS JOINT PROGRAMME ON HIV/AIDS

USAID UINTED STATES AGENCY FOR INTERNATIONAL DEVELOPMENT
WHO WORLD HEALTH ORGANISATION

TABLE OF CONTENTS
Abstract........................................................................................................................................................... 2
Declaration...................................................................................................................................................... 3
Acknowledgement .......................................................................................................................................... 4
Dedication ....................................................................................................................................................... 6
International Award linked to current PhD Research ...................................................................................... 7
New Investigator in Global Health Scholarship Award 2011 (NIGH): ................................................................ 7
Acronyms and abbreviations ........................................................................................................................... 8

CHAPTER 1 .................................................................................................................................... 16
Introduction ................................................................................................................................................ 16
1.0 Background of research study.................................................................................................................... 16
1.1 Rationale of study ...................................................................................................................................... 22
1.2 Purpose of the study .................................................................................................................................. 24
1.3 Research question ...................................................................................................................................... 27
1.3.1 Research Aims ................................................................................................................................ 27
1.4 Organisation of thesis ................................................................................................................................ 27
1.4.1 Search strategy........................................................................................................................................ 29
1.5 HIV/AIDS in Nigeria .................................................................................................................................... 30
1.5.1 Introduction ........................................................................................................................................ 30
1.5.2 Socio-cultural factors and HIV/AIDS in Nigeria ....................................................................................... 32
1.5.2.1 Causes of HIV related Stigma ........................................................................................................... 34
1.5.2.2 Current conceptualisations of stigma .............................................................................................. 36
1.5.2.3 Critique of current stigma frameworks ........................................................................................... 38
1.5.3 Socio-cultural factors and access to healthcare ...................................................................................... 40
1.5.4 Specific socio-cultural issues in access in Nigeria ................................................................................... 40
1.6 Comparable work in other parts of Africa.................................................................................................. 41
1.7 Access to ARVs in Nigeria: a comparative analysis .................................................................................... 42
1.7.1 Individual level factors ........................................................................................................................ 42
1.7.2 Resource factors ................................................................................................................................. 43
1.7.3 Socio-geographic factors .................................................................................................................... 44
1.7.4 Health Care System factors................................................................................................................. 44
1.8 Conclusion .................................................................................................................................................. 46

CHAPTER 2 .................................................................................................................................... 47
Review of Health Care Access Theories ............................................................................................... 47
2.0 Introduction: The usefulness of theory ...................................................................................................... 47
2.1 What is access? .......................................................................................................................................... 48
2.2 Social Cognition Models ............................................................................................................................. 49
2.2.1 The health belief model ...................................................................................................................... 49
2.2.2 The theory of planned behaviour ....................................................................................................... 51
9

2.3 Sociological access models ......................................................................................................................... 52

2.3.1 Aday and Andersons access framework ............................................................................................ 52
2.3.2 Andersons (1995) utilisation model................................................................................................... 54
2.3.3 The dynamic response framework ..................................................................................................... 55
2.3.4 Penchansky and Thomas (1981) Framework ..................................................................................... 56
2.3.5 The model of the 4 As ......................................................................................................................... 56
2.3.6 Pathway models ................................................................................................................................. 57
2.3.7 Ethnographic decision-making models ............................................................................................... 57
2.3.8 The Institute of Medicine Framework ................................................................................................ 58
2.4 Limitations of current theoretical frameworks on access.......................................................................... 58
2.5 Interpersonal theories ............................................................................................................................... 60
2.6 Community level theories .......................................................................................................................... 61
2.6.1 Organisational change theory............................................................................................................. 61
2.6.2 Diffusion of innovation theory............................................................................................................ 63
2.6.3 Communication theory ....................................................................................................................... 64
2.6.4 Community Organisation theory ........................................................................................................ 67
2.7 Theories on structural factors and HIV ...................................................................................................... 68
2.7.1 Barnett and Whiteside theoretical model .......................................................................................... 69
2.7.2 Sweat and Denisons model................................................................................................................ 71
2.8 The socio ecological framework ................................................................................................................. 74
2.9 Conclusion .................................................................................................................................................. 76

CHAPTER 3 .................................................................................................................................... 77
Methodology: Using Grounded Theory in an Access Study ............................................................................ 77
3.0 Introduction ............................................................................................................................................... 77
3.1 Reflections of a Grounded Theorist ........................................................................................................... 77
3.1.1 Role of my religiosity on research ...................................................................................................... 81
3.1.2 Influence of medical practice/background on research ..................................................................... 84
3.2 Using Grounded Theory as a methodology................................................................................................ 86
3.2.1 Glaserian Grounded Theory................................................................................................................ 87
3.2.2 Straussian Grounded Theory ........................................................................................................ 87
3.2.3 Charmazian Grounded theory ....................................................................................................... 89
3.2.4 Grounded theory: Is it aphilosophical?............................................................................................... 90
3.3 The literature challenge in Grounded Theory ............................................................................................ 92
3.4 Role of the researcher in the research....................................................................................................... 93
3.4.1 Cultural and linguistic competency of the researcher ...................................................................... 100
3.4.2 Acquisition of skills needed for the research .................................................................................... 100
3.4.3 Social connections of the researcher ................................................................................................ 100
3.5 Research stages and setting ..................................................................................................................... 101
3.5.1 Qualitative-quantitative debate ....................................................................................................... 102
3.5.2 Project Site ........................................................................................................................................ 105
3.5.3 Sampling ........................................................................................................................................... 105
3.5.4 Target Population ............................................................................................................................. 105
3.5.5 Sample characteristics ...................................................................................................................... 106
3.5.6 Recruitment Procedures ................................................................................................................... 109
3.6 Type of Interview ..................................................................................................................................... 110
3.6.1 How the interviews were conducted ................................................................................................ 112
3.6.2 Power balance during interviews ..................................................................................................... 113
10

3.7 The stages of analysis ............................................................................................................................... 114

3.7.1 Grounded theory analysis: The process of coding ............................................................................ 114
3.7.2 Open coding ...................................................................................................................................... 115
3.7.3 Selective coding ................................................................................................................................ 116
3.7.4 Theoretical Coding ............................................................................................................................ 117
3.7.5 Explorative interaction with Nvivo8 ................................................................................................. 118
3.7.6 Ethical considerations ....................................................................................................................... 120
3.7.6.1 Coping strategies of the researcher .......................................................................................... 121
3.8 Conclusion ................................................................................................................................................ 122

CHAPTER 4 .................................................................................................................................. 123

Stigma in access to ARVs in Nigeria ................................................................................................... 123
4.0 Introduction: The Discredited attribute of HIV infection and stigma ...................................................... 123
4.1 Stigma, prejudice and discrimination....................................................................................................... 124
4.2 A typological conceptualisation of stigma ............................................................................................... 126
4.2.1 Self Stigma............................................................................................................................................. 128
4.2.2 Familial Stigma ...................................................................................................................................... 131
4.2.3 Community stigma ................................................................................................................................ 134
4.2.3.1 Projectory stigmatisation............................................................................................................... 137
4.2.4 Structural stigmatisation .................................................................................................................. 138
4.2.4.1 Institutional stigmatisation ....................................................................................................... 139
4.2.4.2 Organisational stigmatisation ................................................................................................... 142
4.2.4.3 Functions of stigma ................................................................................................................... 148
4.2.5 The Fear of stigma: the main concern .................................................................................................. 150
4.3.1 Effects of stigma and the power of institutions .................................................................................... 154
4.4 Conclusion ................................................................................................................................................ 156

CHAPTER 5 .................................................................................................................................... 157

The Social connection theory ...................................................................................................................... 157
5.0 Introduction ............................................................................................................................................. 157
5.1 Social connections and Social Capital ...................................................................................................... 157
5.1.1 Disclosure strategies in the literature............................................................................................... 164
5.2 Disclosure to social connectors ................................................................................................................ 166
5.2.1 Selective disclosing ........................................................................................................................... 166
5.2.2 Supportive disclosing ........................................................................................................................ 168
5.2.3 Compassionate non-disclosing ......................................................................................................... 169
5.2.4 Open disclosure ................................................................................................................................ 170
5.2.5 Indirect disclosures ........................................................................................................................... 171
5.3 Individual and Institutional social connectors ......................................................................................... 172
5.3.1 Social connection tools ..................................................................................................................... 176
5.3.1.1 The note .................................................................................................................................... 176
5.3.1.2 The Letter .................................................................................................................................. 176
5.3.1.3 The Phone call ........................................................................................................................... 177
5.4 Stages of access to ARVs in Nigeria .......................................................................................................... 178
5.4.1 The stage of rejection ....................................................................................................................... 178
5.4.2 The stage of alternative access ......................................................................................................... 181
5.4.3 The stage of desired access .............................................................................................................. 184
11

5.4.4 The stage of realised access.............................................................................................................. 184

5.4.5 The stage of disrupted access ........................................................................................................... 185
5.4.6 The stage of continued access .......................................................................................................... 188
5.5 Conclusion ................................................................................................................................................ 190

CHAPTER 6 .................................................................................................................................... 192

Structural forces affecting access to ARVs in Nigeria ................................................................................... 192
6.0 Introduction ............................................................................................................................................. 192
6.1 Organisation of chapter ....................................................................................................................... 193
6.1.1 Structural factors and HIV................................................................................................................. 194
6.3 Economic forces ....................................................................................................................................... 196
6.3.3 Poverty and access to ARVs .............................................................................................................. 198
6.4 Political forces .......................................................................................................................................... 203
6.4.1 Political Actors and Global Forces .................................................................................................... 203
6.4.2 Global Actors .................................................................................................................................... 206
6.4.3 Local politics and access to ARVs ...................................................................................................... 208
6.5 Gender and access to ARVs ...................................................................................................................... 212
6.5.1 Socialist feminism and access to ARVs ............................................................................................. 213
6.5.2 Masculinities matter ......................................................................................................................... 217
6.6 Religion and spirituality............................................................................................................................ 222
6.6.1 Role of faith in God in access to ARVs .............................................................................................. 228
6.6.2 Religion and health ........................................................................................................................... 233
6.6.3 Religion as a coping strategy to access ARVs .................................................................................... 237
6.6.4 Mandatory HIV testing in Nigerian churches .................................................................................... 239
6.6.5 Religious dualism and access to ARVs .............................................................................................. 241
6.7 Conclusion ................................................................................................................................................ 243

CHAPTER 7 .................................................................................................................................... 245

Discussion and conclusion: Stigma in access to ARVs in Nigeria .................................................................. 245
7.0 Introduction ............................................................................................................................................. 245
7.0.1 Research contribution ...................................................................................................................... 247
7.1 Reflections on experiences of research participants ............................................................................... 249
7.1.1 Reflections on stigma ....................................................................................................................... 249
7.1.4 Reflection on structural issues .......................................................................................................... 254
7.2 Conclusion ................................................................................................................................................ 257

REFERENCES/BIBLIOGRAPHY ................................................................................................ 259

APPENDICES............................................................................................................................... 309
Appendix 1 Interview guide used in research .............................................................................................. 309
Appendix 2 Information Sheet .................................................................................................................... 311
Appendix 3 Consent Form ........................................................................................................................... 313

12

Appendix 4 Ethical approval letter from Queen Margaret University .......................................................... 314
Appendix 5 Publications/conference presentations linked with research ................................................... 316
Publication in international journal ............................................................................................................... 316
Poster presentation (Switzerland): ................................................................................................................ 316
Oral presentations: ........................................................................................................................................ 316
World AIDS Day Presentations (UK) .......................................................................................................... 316
Queen Margaret University PhD conferences (UK) ................................................................................... 316
Kwalon Conference in the Netherlands (The Netherlands) ....................................................................... 316
Health and education seminar on Gender and HIV (Nigeria) .................................................................... 316
National Hospital Abuja, Nigeria................................................................................................................ 317

TABLE OF TABLES
13

Table 1 ARV access rates by country in low and middle income countries from UNAIDS (2011) ........17
Table 2 Key words used in search strategy ...........................................................................................30
Table 4 Definition of health promotion concepts, adapted from Croyle (2005) ..................................66
Table 5 Structural HIV prevention frameworks from Sweat and Denison (1995) ................................73
Table 6 Interpretation of the different Grounded Theory terminologies ............................................91
Table 7 Research framework adapted from Crotty, M. (1998) .............................................................95
Table 8 A summary of the role of the researcher in current PhD research ..........................................99
Table 9 Fustukians (2005) Donor Strategic Framework for Global Actors .........................................208
Table 10 A limited conceptualisation of the God concept developed in current research ................232
Table 11 Stigma intervention framework developed in current PhD research ..................................250

14

Table of figures

Figure 1 Map of Nigeria with ARV treatment sites (HERFON 2007) .....................................................21
Figure 2 Aday and Andersons (1974) Access Framework ....................................................................53
Figure 3 Anderson and Newmans (1973) Model of Access .................................................................54
Figure 4 Andersons (1995) Model of Access to health care.................................................................54
Figure 5 Frenks Access Framework ......................................................................................................57
Figure 6 Multi-level Socio-ecological framework from Croyle (2005) ..................................................74
Figure 7 Diagrammatic representation of research adapted from Bovill (2005) ................................104
Figure 8 Graphic representation of residential location of research participants ..............................107
Figure 9 Graphic representation of marital status of participants .....................................................108
Figure 10 Graphic representation of gender of research participants ...............................................108
Figure 11 A Typological Stigma Theoretical Framework .....................................................................127

15

Chapter 1

Introduction
1.0 Background of research study
This PhD research sets out to examine the socio cultural factors that affect access to
antiretroviral treatment in Nigeria. This grounded theory study examines the
experiences of people living with HIV/AIDS in Abuja, Nigeria as they attempt to
access anti-retroviral drugs (ARVs). This introductory chapter is organised in 6
sections. In the first section of this chapter, the context of the research study is
introduced. In the second section, the rationale, purpose, aims and objectives of the
study are discussed. In the third section, the organisation of the thesis and search
strategy is explained. In the fourth section, the current literature on HIV in Nigeria,
stigma and other socio cultural issues related to HIV are discussed. In the fifth
section, literature on access to health care and ARV therapy are discussed. In the
last section, conclusions are made. Stigma is an important cross cutting theme that
runs throughout the thesis and related to the findings in chapter 4 of this thesis.
With the advent of anti-retroviral drugs, people infected with HIV infection are able to
live longer. They have also been demonstrated to have better quality of life (Jordan
et al. 2002). However many HIV infected patients in resource poor settings do not
have access to ARVs partly due to socio-cultural and economic reasons such as
stigma, poverty, religious beliefs and politics (Abadia-Barrero and Castro 2006). The
Nigerian Government ARV access programme originally started in January 2002
with the Nigerian government starting treatment for 10,000 adults and 5,000 children
for less than $1 daily (Oturu 2006). However, the drugs could not reach everyone
that needed access. Although this is still low, it has to be appreciated that the
situation has improved since 2005, when this study started. At the time this research
started, the ARV access rate was estimated to be 16.6% (UNGASS 2007; NACA:
NNRIMS Database 2008). Recent statistics from UNAIDS suggest that the access
rate of ARVs in Nigeria has increased. It is currently estimated to be about 35%. The
estimated number of people on ARVs in Nigeria is 359,181 (UNAIDS 2011). Table 1
below, depicts the ARV access rates in Nigeria and compares this with different low

16

and middle income countries 2010. It is difficult however, to have accurate access
rates as new projects are constantly being developed by religious organisations and
non-governmental organisations and many of these are not captured by the Nigerian
government or UN (United Nations) statistics.
Table 1 ARV access rates by country in low and middle income countries from UNAIDS (2011)

17

This research was carried out in the capital city of Nigeria, Abuja. Due to Abujas
close connections with the Nigerian Federal Government operational structures, it is
a multicultural centre where there is convergence of people from the different tribes
and political regions of Nigeria.
The Human Immunodeficiency Virus (HIV) is the causative agent of the Acquired
Immune Deficiency Syndrome (AIDS). HIV infection is a global health issue that
affects 34 million people worldwide. This number is up 17% from 2001. The total
number of AIDS related deaths in 2010 was 1.8 million, down from 2.2 million in the
2005. The number of people newly infected with HIV in 2010 was 2.7 million
(UNAIDS 2011). Globally, the proportion of women living with HIV is 50%. However,
a greater proportion of women (59%) are infected with HIV in Sub-Saharan Africa.
Sub-Saharan Africa bears the main brunt of the epidemic accounting for 68% of HIV
infections and contributing to 7% of all HIV infection in 2010 (UNAIDS 2011). With an
HIV prevalence rate of 4.4%, Nigeria has the third highest number of PLWHA
(PLWHA) worldwide (UNAIDS 2011).
ARVs are medication that give PLWHA better quality of life, increase life expectancy
and reduce progress to AIDS or death by 40% (Jordan et al. 2002, Adedimeji and
Odutolu 2005). There is also evidence in the so called Swiss Report published in
the Bulletin of Swiss Medicine which suggests that ARV therapy may reduce risk of
heterosexual transmission of HIV if the HIV viral load is suppressed for at least six
months (Quinn et al. 2000; Porco et al. 2004; Castilla et al. 2005; Benard 2008;
Vernazza et al. 2008). This suggests that ARV therapy may also be useful in
secondary prevention of HIV transmission. The first HIV (ARV) drug AZT, was not
very effective in the clinical treatment of HIV infection and was prone to drug
resistance. However, with the introduction of combination therapy (The combination
of different reverse transcriptase inhibitors and protease inhibitors) the effectiveness
of HIV therapy improved remarkably (Forsythe 1997).
Combination therapy involves combining two or more ARVs for HIV treatment. Initial
therapy with one ARV (monotherapy) or 2 (dual therapy), was ineffective. Later
studies showed that combining 3 or more (triple or highly active antiretroviral
therapy) antiretroviral drugs in treating HIV was effective in suppressing HIV infection
to undetectable viral levels. These antiretroviral drugs include reverse transcriptase
18

inhibitors and protease inhibitors that work on different parts of the HIV infection
pathway. Highly active antiretroviral therapy also led to better quality of life for HIV
positive patients. At the time of this study, ARV therapy was started when the CD4
count was less than 200 cells/mm3. However, the World Health Organisation (WHO
2009) revised the ARV therapy guidelines in 2009 and this was raised to 350
cells/mm3. This is in keeping with guidelines from other developed countries such as
the British HIV/AIDS Association ARV guidelines. This revision of CD4 count levels,
has led to an increase in the number of people infected with HIV who are eligible for
ARV therapy.
More studies in the Western world (Europe, USA and Australia) suggested that the
Highly Active Anti Retroviral Therapy (HAART) was very effective (Ho 1995).
Alongside an improvement of diagnosis and prevention of opportunistic infections,
outcomes for people infected with HIV improved in wealthier countries. The biggest
shift came at the 1996 International AIDS conference in Vancouver. At the
conference, convincing evidence was presented to show that highly active
antiretroviral therapy could drastically reduce HIV viral load to undetectable levels
over a long period of time and did not cause resistance in majority of patients
(Williams and De Cock 1996).
This contributed to the rapid reduction of AIDS prevalence in the developed world.
This occurred through rapid roll out of ARV therapy in hospitals in wealthy countries.
However, the high costs of the drugs made it difficult for patients in middle and low
income countries to have access to the HIV therapy (Oturu 2006). In 2000, activists
in Durban had a global march for universal access to ARVs during the 13th
International AIDS conference (Treatment Action Campaign 2000). This was the first
global call in Africa. It was not until 2005 that the World Health Organisation began to
champion the need for ARVs to be rolled out in developing countries as well.
In Brazil, improved access to ARVs led to reduced rates of hospital admissions,
decrease in treatment of opportunistic infections and savings in economic and social
costs (Galva 2001; Teixeira et al. 2004; Harling 2007). Galva (2001) also asserts that
access to ARVs in Brazil reduced the number of AIDS deaths by as much as 73% in
the municipality of Rio de Janeiro.

19

Based on these benefits, there has been an increased call from key stakeholders for
countries to incorporate HIV treatment into HIV implementation programmes
(Oliveira-Cruz et al. 2004). Therefore, Farmer et al. (2001) and Mukherjee et al.
(2003) suggest that it is imperative that highly active anti-retroviral therapy be scaled
up in resource-poor countries, as the therapy contributes to a 90% reduction in
mortality. The need for scaling up ARV access in resource poor settings is also
reflected in Creese et al.s (2002) review of implementation programmes in which
they suggest that it is cost-effective to incorporate HIV treatment in prevention
programmes.
With increasing research evidence of the benefits of ARVs and pressure from civic
groups, it became difficult for global stakeholders not to take action in making ARVs
more accessible in poor countries. These factors contributed to the initiation of
projects such as the World Health Organisations (WHO 2003) 3 by 5 initiative, in
which 3 million people worldwide were to be placed on ARVs by the end of 2005.
(The Global Fund to Fight Aids, Tuberculosis and Malaria (GFATM) and the United
States Presidents Emergency Plan For AIDS Relief (PEPFAR) provided sources of
funding for the Nigerian ARV treatment programme which started in 2001 (Kim and
Gilks 2005; Oturu 2006).
For the first Nigerian Government ARV access programme, an initial $3.5 million
worth of generic ARVs were procured from Indian pharmaceutical companies. Under
the Nigerian government ARV access programme, Lamivudine, Nevirapine and
Stavudine were included in the programme (HERFON 2007). Over recruitment
resulted in shortage of medication and stock of drugs ran out. In 2003, patients had
their drug regimens halted for up to 3 months as the programme was hit by this
shortage. Eventually, $3.8 million worth of ARVs were procured and the programme
continued. The Nigerian Federal government then announced that it aimed to put
240,000 patients on ARVs by 2006. However the efforts were hampered by a poor
health care system and lack of funding (HERFON 2007).
Efforts to increase the number of PLWHA on ARVs in Nigeria have been assisted
greatly by the commitment of international donor agencies. The United States
PEPFAR programme aimed to provide 350,000 patients with ARVs over 5 years
(Oturu 2006, HERFON 2007). In a bid to overcome duplication of efforts, the donor
20

agencies agreed to collaborate. It was agreed that PEPFAR should be one of the
main funders for the ARV access in Nigeria. The PEPFAR ARV programme is being
implemented with other partners (namely, AIDS Prevention Initiative, Action Project,
Catholic Relief Service (AIDS Relief), The Global HIV/AIDS Initiative Nigeria
(GHAIN) and the Columbia Universitys International Centre for AIDS Care and
Treatment Programmes) (HERFON 2007).
The GFATM also provides funding in the Nigerian Government ARV sites. However,
the fund of the GFATM appears to favour using the National Action Committee on
AIDS for the major disbursement of its funds (NACA 2011). Other sources of funding
for ARV treatment programmes include Bill and Melinda Gates Foundation and the
UK Department for International Development (DFID). Other important donor
agencies involved in reproductive health include the United States AID agency
(USAID), United Nations Childrens Fund (UNICEF) and the World Health
Organisation (WHO) (Oturu, 2006, HERFON 2007). A map of Nigeria showing ARV
sites including Abuja (research study site at the centre) and HIV prevalence rates is
shown in figure 1.
Figure 1 Map of Nigeria with ARV treatment sites (HERFON 2007)

21

There has been a fall in the HIV prevalence rates in Nigeria from 5.8% in 2005 to
4.4% in 2009 (NACA 2011). However, apart from possible reduction in numbers of
new HIV infections, people dying from the infection may have also contributed to the
fall in HIV prevalence. Preventive initiatives such as use of condoms, public
enlightenment and media campaigns on HIV, sex education in schools and
availability of treatment of sexually transmitted diseases may also have contributed
to the reduction in HIV prevalence (Connor et al. 1994; Markowitz et al. 1995;
Harrington and Carpenter 2000). It is also difficult to compare different prevalent
rates by year due to the use of different test kits and sample populations. During
some sentinel surveys, only rural populations were tested while others tested both
urban and rural populations.
The statistical projections only take samples from women going for antenatal tests in
to consideration. These are then extrapolated to the entire population. The non
inclusion of males in the sentinel surveys and the inclusion of only women in the
reproductive age may limit the accuracy of generalisation of the extrapolation of the
results of the HIV sentinel surveys. However, what is clear is that there is a reduction
in the prevalence rate of HIV in Nigeria as in other sub Saharan countries. This may
be due to HIV enlightenment campaigns and improved access to ARVs. Current
statistics from sentinel surveys provide a guide as to the levels and trends of HIV
infection in Nigeria.

1.1 Rationale of study

Nigerias high HIV prevalence rate provides part of the rationale for this study.
Although there are many ARV access initiatives, people living with HIV in Nigeria still
do not have access to ARVS. There were about 215 ARV treatment sites in Nigeria,
around the time that this research started and this number has increased. It is
however, difficult to estimate the current total number of ARV sites as the private
sector, non-governmental organisations and faith based groups have started
providing ARVs with help from donor funding (Oturu 2011). The National Action
Committee on AIDS was also set up nationally in 2001 to coordinate the fight against
the AIDS epidemic using a multi-sectoral approach (Oturu 2006). However
procurement and distribution of the drugs to Health facilities is undertaken by the
Federal Ministry of Health (Ibid).

22

While work has been done looking at access to health care generally with emphasis
on evaluating the health care systems, there is a need for researchers to also
consider demand side factors that may influence how patients access HIV treatment
(Colebunders et al. 2000; Goddard and Smith 2001; Reynolds et al. 2003; Ensor and
Cooper 2004; Egger et al. 2005). As Ashnie (2006) asserts, most studies on ARV
access focus on evaluating various health care systems components without looking
at socio-cultural factors on the demand side. Therefore, this research aims to
examine this aspect, so that socio-cultural barriers can be identified and addressed
in ARV programmes. This study also considers socio-cultural interactions between
patients and healthcare workers within the health care system.
Although there is substantial literature on access to health care, most studies that
were carried out in Africa were conducted about a decade ago (Caldwell 1993;
Mwenesi and Harpham 1995; Molyneux et al. 2002). While they may still be relevant,
contemporary research on socio-cultural influences and access to ARV may be vital
as culture is dynamic and shaped by changing political influences and globalisation.
It may also be important to analyse if results of research carried out in the past are
still relevant today.
Most of the studies have tended to rely on quantitative methodology which has
limited capacity in exploring the complex attitudes of health seeking behaviour and
cultural construction of disease as well as the strategies patients use to overcome
the barriers to treatment. Hence, this study examines access to ARV treatment using
a qualitative approach. This research aims to add to the body of qualitative research
that does exist, looking at use of ARVs and draws on samples from semi-urban
areas in Nigeria.
Erinosho (1996) from the Nigerian Sociology Council argues that health research in
Nigeria which can provide the basis for developing middle range theories is required.
He argues that most health sociologists focus mainly on operational research for
policy purposes. Ware and Wyatt (1999) similarly argue against the inculcation of
theoretical frameworks in settings other than those where they were developed
without taking cognisance of the socio-cultural context where they are being
imported from.

23

1.2 Purpose of the study

A Grounded Theory methodological design was used to explore the socio-cultural
factors that affect access to ARVs as people living with HIV enter or attempt to enter
the health care system in Nigeria. Grounded Theory is utilized as it is designed to
examine the experiences of social actors to explain basic social processes within a
particular phenomenon. This approach is useful in this research which investigates
the process of access to ARVs.
This methodological approach is useful in teasing out socio-cultural issues that may
be difficult to obtain using structured quantitative approaches. Qualitative
approaches are particularly appropriate for explaining complex phenomena and
developing theoretical understanding. Due to the sensitive nature of the infection, indepth interviews were preferred and utilized as the primary method of data
collection. This was supplemented with analysis of preliminary and secondary
literature.
In this Grounded Theory study, theories that relate to access to healthcare are
critiqued and related to each other. However, the theory of social connection is
generated from the data. The social connection theory is hence a product of the
research and not used extensively in the process of the research. Nevertheless, the
developed theory is compared and contrasted with related theories and employed in
explaining how social connections can be used to improve access to ARVs in
resource poor settings. Further information on the methodological considerations
and philosophical assumptions underpinning this research are provided in chapter 3.
A sociological approach is used as an entry point into the debates surrounding
stigma and access to ARVs in Nigeria. From this entry point, a multi-disciplinary
perspective is utilised to investigate access to ARVs in Nigeria. A multi-disciplinary
approach is defined in this thesis, as a strategy that draws from different disciplines
(such as psychology and health promotion). This strategy is very useful in this kind of
research as it is broad and flexible enough to embrace multiple perspectives and
theories from different disciplines. Using multi-disciplinary perspectives recognises
the role of structural and/or contextual forces in a complex rapidly changing
environment that may influence health seeking behaviour.

24

In this thesis, it is argued that structural factors (such as politics, religion and gender)
influence the way people access HIV treatment as these forces impact on peoples
health care seeking behaviour as a consequence of global, national and local
structural pressures. Auerback et al. (2010) from the Aids2031 Social Drivers
Working Group, argue that social forces (or drivers) influence HIV transmission and
offer possible points of intervention at the societal level. In this thesis, it is argued
that there are different intervention points linked to these structural factors which can
be targeted in order to improve access to ARVs in resource poor settings. There is
an increasing acceptance of the fact that structural issues such as poverty and
political instability have a profound impact on the HIV risk and vulnerability of HIV
positive patients (Rhodes and Simic 2005; Barnett and Whiteside 2006). A detailed
discussion on structural forces and HIV is provided in chapter 6 of this thesis.
For the purpose of this research, access is defined as the capacity of patients to
command appropriate healthcare resources in order to safeguard or improve their
health when needed (Gulliford et al. 2002). This suggests that the degree to which a
patient population gains access depends on its ability to overcome other sociocultural and organisational barriers. This means that access does not necessarily
begin at the health care system. Even before the patient gets to the health care
system, there are social and structural barriers in the community that need to be
overcome. Even when they are in the health care system, the patients still need to
overcome the organisational obstacles within the health care system to access HIV
treatment.
Abadia-Barrero and Castro (2006) state that theoretical research which investigates
the complex role that socio-cultural issues play in access to HIV treatment is
desperately needed. Parker and Aggleton (2003) also assert that there is an
inadequacy of theoretical tools to investigate stigmatization within social processes.
Although some of the findings may be applicable to other African settings, this
research is specific to Nigeria. MacDonald (1996) proposes that what is needed in
ARV access studies is country specific research that will take into consideration the
unique socio-cultural context of the nations.

25

This research is useful in validating whether the socio-cultural factors that affect
access to HIV treatment in other African settings are similar in Nigeria using a
different sample and method. Furthermore, it highlights unique socio-cultural and
policy influences that affect access to ARV treatment in Nigeria. Issues that are
important in one context may be less important in another context because of
differences in policies and health care funding mechanisms. For example, Petchey et
al. (2000) cite level of doctor expertise, confidentiality and security as part of
concerns of PLWHA who access state programmes for HIV treatment in England
and Wales. However, other factors may be found in other contexts that have a
different funding mechanism or cultural context. Health care systems are specific to
national and regional socio-historic contexts.
Different countries have diverse funding mechanisms, organisational structures and
processes. For example, in Nigeria, funding for ARVs is mainly through donations
from international donor agencies. The ARVs are now provided free of charge to all
those who attend the state HIV programmes in Nigeria. However, patients may need
to pay consultation and laboratory fees in order to access HIV treatment (Oturu
2006). This kind of structural scenario may lead to other factors having an impact on
access to ARVs. Due to differences in political and health care systems, applicability
of research done in other settings in the Nigerian context is limited. Consequently,
this current research examines access to ARVs by taking the specific socio-cultural
context of Nigeria into consideration.
The design of this research and the research questions are framed around sociocultural issues that may impact on access to ARVs and which are dynamic and may
change with time. These concerns were used as entry points or spring boards into
the study. However, in using the principles of Grounded Theory, there was flexibility
in the research to follow the main concerns of the participants that emerged in the
study. Further information on the methodological considerations that were utilised in
this study is provided in chapter 3.

26

1.3 Research question

The research question is What are the socio-cultural factors that affect access to
antiretroviral drugs in Nigeria? These aims cover socio-cultural issues in the
community and also within the health care system.

1.3.1 Research Aims

The aims of the research are:

To examine the experiences of people living with HIV accessing ARV therapy
in Nigeria

To investigate HIV related stigma as people living with HIV access ARV
treatment in Nigeria

To generate a theoretical framework for analysing HIV related stigma as

people access ARVs

To investigate structural factors that affect access to ARVs in Nigeria

1.4 Organisation of thesis

This thesis is organised in seven chapters. In the first chapter, the Nigerian context is
described. The rationale for the study and the current theoretical debates
surrounding access to ARVs are discussed. In the second chapter, a theoretical
review of different access frameworks is undertaken which can help provide
understanding of some of the issues encountered in the data on access to HIV
treatment in Nigeria. In the third chapter, a methodological reflection of the research
process is undertaken, which describes the way in which grounded theory shaped
the data collection and the generation of conceptual frameworks. The chapter
examines the epistemological perspective undertaken in this study (social
constructionism). An analysis of the Grounded theory methodological variants is
undertaken and an argument made as to why the modified Classic Grounded Theory
methodology was utilised. In the fourth chapter, the argument for the importance of
structural theories in influencing health seeking behaviour is made drawing on
evidence from the literature and data from the research.

27

In the fifth chapter, the social connection theory is explained and related with social
capital and other theories at the interpersonal, organisational and institutional level.
In the sixth chapter, the main concern of the participants (fear of stigma) is
discussed, analysed and linked with other stigma theories. A typological stigma
framework is also developed out of the findings, which conceptualises stigma as
occurring at different interrelated levels. In the seventh chapter, a discussion on how
a multi-disciplinary approach to tackling stigma can be developed is undertaken. In
the last chapter, the findings of the research are summarised and final
recommendations are made.
Due to the qualitative nature of this thesis, findings, theories and literature are
compared and contrasted throughout the whole thesis. As Glaser (1998) argues, all
is data. This means that everything in the path of the researcher (including research
field experience, findings, news and literature) are all collated and contribute to the
emerging theory. Consequently, the findings of the study are interspersed and
related with the literature and theory throughout the whole thesis to back up the
arguments. The social connection theory and the stages of access theories emerge
in this study as products of this research. In this thesis, a review of the different
access

theoretical frameworks

is

undertaken.

Using a

Grounded Theory

methodology, the social connection theory is developed as a social theoretical

framework that works at the interpersonal level of health seeking behaviour.
In the discussion, it is argued, that there is no one size fits all theory that can
improve access to ARVs. In contrast, using a multi-disciplinary approach, I suggest
that it is a combination and conglomeration of different theories being utilised at
different levels that can work synergistically in order to investigate the problem of
poor access to ARVs. Drawing from advances in sociology, health promotion, social
psychology and theology, I argue that in order to improve access to ARVs a multidisciplinary approach needs to be utilized that takes cognisance of theoretical
developments at the individual, familial (or interpersonal), community, institutional
and organisational level. This will require multiple stakeholder collaboration and
interpenetration of different strategies from different disciplines and perspectives.
Stigma and social connections are cross cutting themes that are found throughout
the thesis. For the purpose of this thesis, social connections are social links that a
28

person is able to mobilise to enable them to access health care. The social links
(social connectors) may be categorised into detractors (who link the patient to
alternative health care services) and facilitators (who link the patient to the orthodox
health care system). Due to the interdisciplinary nature of the research, there is
cross referencing of links to the data and themes across the chapters.

1.4.1 Search strategy

The literature searches were conducted using the databases of MEDLINE,
SCOPUS, Cumulative Index to Nursing and Allied Health Literature and Google
Scholar search engine. The databases provided a broad view of related articles from
leading scientific journals in sociology, anthropology, public health, nursing and
psychology. Key words in the literature search were based on the research question
and sections of the thesis. Key words were also included in the I-link tool of Queen
Margaret University Edinburghs and University of Edinburghs on-line libraries. A
summary of the key words used for the various sections of the thesis are
summarised in table 2. The reference lists of selected articles were also reviewed for
further articles. Relevant articles from these lists were then reviewed.
Thousands of potential articles were identified for the thesis. Articles were selected
which provided information on the state of ARV therapy in Nigeria, the social context
of Nigeria and its impact on HIV, information on access theories and relationships
between predisposing, financial/economical, need, health care factors and access to
health care/ARVs. Abstracts were checked initially. If they implied that the article was
relevant then the whole article was reviewed. The review centred on studies that
provided insight on the social aspects of access to health care. The review also
focused on contemporary studies conducted within the last two decades.
Various combinations of keywords were used to limit searches using Boolean or
and and reasoning. Both preliminary and secondary literatures were considered as
well as studies of any design that dealt with access to health care and ARVs.
Literatures selected were mainly restricted to those in English.

29

Table 2 Key words used in search strategy

Section of thesis
General background.

Key words
Nigeria, country profile, World Bank,
NACA, UNDP, UNAIDS, HIV, AIDS,
antiretroviral drugs
Socio-cultural factors and access to Social factors, cultural factors, stigma,
health care/ARVs.
access,
infection, health
care,
antiretroviral drugs, Africa, Africa,
Nigeria, structural, gender, politics,
religion.
Rationale of study.
Nigeria, antiretroviral drugs, ARV
treatment, benefits ARV(s), scaling
up.
Review of theoretical frameworks on Theory, model, framework, access,
access.
health care, antiretroviral drugs, HIV,
AIDS.
Review of studies on access to health Nigeria, Africa, Predisposing factors,
care and ARVs.
age, education, gender, access,
accessibility,
enabling
factors,
finances, cost, economics, access,
utilization, barrier, barriers, health
care,
need
factors,
access,,
antiretroviral drugs, ARVs.

1.5 HIV/AIDS in Nigeria

1.5.1 Introduction
Nigeria is located in the Western part of Africa. Nigeria was colonised by the United
Kingdom but gained independence on October 1st 1960. This has been followed by a
civil war and successive military dictatorships. However, Nigeria is currently under
democratic rule. Nigeria runs a Federal political system and has 36 states including a
Federal Capital Territory (Abuja). 49% of the population are Muslim and 49% are
Christian with a few indigenous religions (2%). Nigeria is a diverse country with
about 200 tribes and 250 languages. These different tribes have different religious
and cultural practices. The Northern part of Nigeria is predominantly Muslim, while
the Southern part is predominantly Christian. The three dominant tribes are the Igbo,
Yoruba and Hausa tribes. (Isiugo-Abanihe 2006).

30

The first case of HIV infection in Nigeria was recorded in 1986 in a sexually active
female teenager. This was during the military dictatorship era. There was a period of
denial of HIV/AIDS as a national problem. AIDS was interpreted socially to be an
American invention to discourage sex. The South, Eastern and Middle Belt regions
appear to have higher HIV prevalence rates, while the Northern and Western regions
tend to have lower HIV prevalence rates. It could be speculated that the strict Muslim
practices in the Northern part of the country and the high literacy rate in the Western
part of Nigeria could account for these observations. However, with under reporting
and under diagnosis, the HIV prevalence data may not accurately reflect the HIV
trends in the country.
Although Nigeria is the 8th largest producer of oil worldwide, 54% of the population
still live on less than $1 a day (World Bank 2007). Nigeria has a population of 154
million. The potential impact of an unchecked HIV epidemic is huge (WHO 2011).
The infant mortality rate in Nigeria was 100 per 1000 live births while Life expectancy
at birth fell from 53 in 1990 to 47 in 2007. This is mainly due to the effects of
HIV/AIDS. However, there are other factors such as larger earlier prevalence rates
(e.g. 5.8% in 2005), poverty, low immunisation rates, recrudescence of tuberculosis
and emergence of chronic non infectious diseases such as diabetes and
hypertension which may also contribute to the reduced life expectancy (Population
Reference Bureau 2007; UNICEF 2007). Recent statistics from some organisations
suggest that the infant mortality rate in Nigeria has fallen to 75 per 1000 live births,
while life expectancy has risen marginally to 47.7 years in 2009 (Population
Reference Bureau 2009; UNGASS 2010; UNICEF 2011).
In children under five years of age, HIV/AIDS accounts for 7.7% of mortality in
Nigeria (Tindyebwa et al. 2006). Together with factors such as declining
immunization, HIV/AIDS is threatening recent gains in infant and child survival. The
impact of AIDS has reversed the gains of 30 years of health interventions (World
Bank 2007). There is a wide variation in the HIV prevalence rate in different states in
Nigeria. The latest national HIV prevalence technical report suggests that Benue
state, Nigeria has a prevalence rate of 10%, Abuja 6.1% while Ekiti State has a
prevalence rate of just 1.6 % (UNGASS 2010). The relatively small national HIV
prevalence rate of 4.4% masks the fact that with Nigerias huge population, Nigeria
has the third largest number of PLWHA worldwide, behind India and South Africa
31

(UNAIDS 2011). For the purpose of this research PLWHA are defined as People
infected with the HIV virus that may or may not have progressed to having AIDS
disease (UNAIDS 2011).
In 2009, 3,300,000 people were estimated to be living with HIV in Nigeria. Of these,
48.5% were male while 51.5% were female (UNAIDS 2011). The number of Nigerian
deaths due to AIDS has reduced from 310,000 in 2003 to 220,000 in 2009 (UNAIDS
2004; UNAIDS 2011). However, the estimated number of AIDS orphans under the
age of 17 years in Nigeria has risen from 1,800,000 in 2003, to 2,500,000 (UNAIDS
2004; UNAIDS 2011).
Part of the socio-cultural consequences of HIV/AIDS includes the increasing need for
assistance for orphans whose parents have died from AIDS in the area of schooling
and health care which is not provided by social services in Nigeria (NACA 2002).
Other effects of HIV/AIDS include the bearing of funeral costs, loss of experienced
workers, increased hospital admissions, reduced economic productivity and stigma
(NACA 2002; UNAIDS 2002; Oturu 2006). Hilhorst et al. (2006) demonstrate that in
Benue state Nigeria, where HIV prevalence rates had risen to as high as 10%, HIV
has contributed to negative economic outcomes. These include high costs in terms
of expenditure and time spent on care, funerals and mourning. The demand on time
also affects income as resources are diverted from working to the care and treatment
of the HIV infected persons.

1.5.2 Socio-cultural factors and HIV/AIDS in Nigeria

Most cases of HIV infection in Nigeria are spread through heterosexual intercourse
(UNGASS 2010). Cultural practices such as girl child marriages, polygamous
marriages and wife hospitality (where wives of Benue state natives sexually entertain
their husbands guests) could facilitate the spread of HIV infection (POLICY 2003;
Folayan 2004; Oturu 2006).
Poverty has also been reported to contribute to the spread of HIV in Nigeria
(UNAIDS 2004). In a resource poor setting with absence of social support, credit or
loans, young girls occasionally enter sexual relationships with older men in exchange
for favours, gifts or money in what has been described as the sugar daddy syndrome
(Doyal 2001; POLICY 2003; Folayan 2004; Oturu 2006).

32

Social migration patterns are also reported to contribute to the spread of HIV as
some men leave their families in rural areas in search of employment and eventually
use the services of commercial sex workers (MacDonald 1996; Oturu 2006; UNAIDS
2008). Folayan (2004) argues that wives in the rural areas of Nigeria, on hearing
about their husbands sexual practices in the city often retaliate by having
extramarital affairs. As Farmer (2005) and Barnett and Whiteside (2006) argue,
migration has been identified as a high risk factor for driving the HIV epidemic.
Gender issues also influence the spread of HIV. Ikechebelu et al. (2008)
demonstrate in their quantitative study involving 186 female street hawkers, that poor
women in Nigeria are prone to sexual abuse during the course of their trade. 28.1%
of those that engaged in penetrative sexual intercourse were forced while 56.3%
said they had sexual intercourse willingly.

Enwereji (2008) using a mixed

methodological research design demonstrates that women in the Eastern part of

Nigeria are denied access to family resources. He suggests that this is one of the
factors that motivate women to engage in risky sexual practices, for example
transactional sex.
Even when women know of the risks of HIV transmission, Enwereji (2008) found that
they do not use condoms on the basis that men do not like them. Women have little
or no decision making power over the use of condoms. However, it must be
recognised that there are women who also do not like using condoms as it is
perceived as not being as intimate as unprotected sex (Surez et al. 2008). In some
Nigerian cultures, women have to prove their fertility by getting pregnant when in
sexual relationships (Mbakwem 2010).
As Surez et al. (2008) suggests, flesh to flesh sex is socially constructed as being
a sign of faithfulness between two partners. In contrast, using the condom is
occasionally construed as an artificial intruder that suggests that the relationship is
an unfaithful one and tends to limit the pleasurable experiences of sexual
intercourse. Folayan (2004) also suggests that the societal sanctioning of husband
infidelity during post-partum abstinence provides evidence that gender has a role to
play in the spread of HIV in Nigeria. As reflected in the structural chapter (6) of this
thesis, gender also plays an important role in influencing how people access HIV
treatment in Nigeria.
33

1.5.2.1 Causes of HIV related Stigma

Another consequence of HIV infection is HIV related stigma. Stigma associated with
HIV/AIDS is one of the important barriers to HIV treatment as individuals fear
accessing HIV test results because of the consequent stigma they may experience if
found to be HIV positive. Using analysis of policy, sentinel surveys and secondary
literature, Alubo et al. (2002) reported high levels of stigma in Nigerian communities.
Fear of contracting an incurable disease was cited as the major cause of the stigma.
Similarly, following analysis of preliminary and secondary literature, Ogunbodede
(2004) argues that HIV/AIDS stigma is still a major problem in Africa.
The people living with HIV stigma index was developed for people living with
HIV/AIDS to attempt to measure stigma in communities by the Global Network of
People living with HIV/AIDS, the International Community of Women living with
HIV/AIDS, the International Planned Parenthood Federation and the Joint United
Nations Programme on HIV/AIDS (GNP+, IPPF, ICW and UNAIDS 2011). The
survey questionnaire is designed to be analysed with Epi-info. The questionnaire
attempts to capture elements of stigma at the individual, community and policy levels
(GNP+, IPPF, ICW and UNAIDS 2011). However, there are limitations in using the
stigma index. For example, it is difficult to get a representative probability sample of
all people living with HIV/AIDS in the community.
Until recently, there was very little written in the literature on HIV and ARVs in
Nigeria. As Ogunbodede (2004) argues, although Africa has the largest proportion of
people living with HIV worldwide, only 4.7% of the 140,736 scientific publications on
HIV/AIDS, from 1981 to 2000 are directly related to Africa. This has changed since
then. Recently, a large number of studies have been published. For example, based
on their survey research in Lagos Nigeria, Adeneye et al. (2006) suggest that
patients are unwilling to access ARVs at a hospital close to where they live because
of fear of stigmatization. In contrast to this study that utilised interviews in North
Central Nigeria, Adeneye et al.s (2006) study focused on the Western part of Nigeria
and utilised surveys. In their study, participants were recruited from the health care
system, while participants from this study were recruited from the community.

34

As Smith and Mbakwem (2010) argue, using data from their ethnographic research
in Nigeria, ARV access programmes need to consider the stigma associated with
non child bearing and non breastfeeding on patients accessing ARVs if they are to
be effective. They investigated the links between fertility, marriage and ARV access.
In another recent study conducted in Western Nigeria, Ogbuji and Oke (2010)
investigated the quality of life of patients living with HIV, who were on ARVs in a
health care centre in Ibadan, Nigeria. They demonstrate that most patients living with
HIV experience low psychological quality of life despite being on ARVs. Again, their
study focused on participants accessing treatment in Western Nigeria in contrast to
the study sample of this study. This was due to the fact that they experienced
stigmatisation from family, friends and the community. As a result of HIV related
stigma, many people living with HIV experience discriminatory reactions from the
community (Alonzo and Reynolds 1995; UNAIDS 2002; Parker and Aggleton 2003).
Parker and Aggleton (2003) argue that due to the nature of HIVs associations with
loose morals, shame, and death many people living with HIV may experience
discriminatory processes. These are social judgemental values about how people
have become infected. Stigma of HIV is also due partly to the association with
socially constructed deviant behaviour, such as intravenous drug use, homosexual
relations and promiscuity (Alonzo and Reynolds 1995; UNAIDS 2002). There is an
implied moral wrong that has been done by the individual that violates the usual
norm, evokes fear and demands that the individual be put out and isolated (Keusch
et al. 2006; Yang et al. 2007). The HIV related stigma persists as the stigmatised
label is viewed as being caused by the individual infected. The perceived
infectiousness and threat of death coupled with the unsightly manifestation of AIDS
all contribute to the process of stigmatization.
Where people have been infected by receiving infected blood transfusion or through
a marriage relationship, this has not consequently translated into sympathetic
reactions by the community (Keusch et al. 2006). One of the participants (Shekira, a
20 year old female student) in this study was infected at the age of 13 after receiving
HIV infected blood transfusion following a road traffic accident. Nevertheless, she
was discriminated against by her own mother who attempted to drive her away from
the family house.

35

The media further helps in fostering stigma by associating HIV with negative
stereotypes and producing sensationalist reports on HIV transmission. Sontag
(1991) further suggests that the metaphorical association of HIV/AIDS with death by
the media also contribute to stigmatisation. She was an eminent writer who took an
early lead in criticising the west for blaming Haitians and Africans for the HIV
infection. She argues that there is a link between imagining the disease and
imageries of foreignness. The feeling of it is not us. It is foreign further helps in
escalation of the process of stigmatization.
Farmer (2006) similarly criticises Westerners for blaming Haitians for the AIDS
epidemic. This blame does not assist in stigma reduction or tackling the AIDS
pandemic. It only helps in worsening it. As Mead (1934) argues, words evoke visual
imagery through conditioning of reflexes from social stimuli. Through association of
HIV/AIDS with negative connotations and foreignness, there is a reflex social
prejudice and discrimination that occurs. There is need to reverse this through
sustained long term innovative social strategies.

1.5.2.2 Current conceptualisations of stigma

Goffman (1963) was an influential sociologist whose early work provides a
foundation for much of the discourse on stigma. For the purpose of this research,
stigma is defined as a socially stereotyped category construction in which some
people are labelled as carriers of discredited characteristics within a particular social
interaction (Goffman 1963).
Jones et al., (1984) suggest that stigma occurs along six stigmatizing marks. These
include concealability (whereby the patient attempts to hide the stigmatised label),
course (whereby the stigmatised label becomes more open (such as progression
from HIV positive status to AIDS)), disruptiveness (whereby the open label disrupts
relationships), aesthetic qualities (whereby unsightly manifestation of the stigmatised
label occurs) and origin and peril (whereby the society fears the stigma label that
manifests in the person and discriminates against them). However, this analysis has
a psychological bias and is individualistic. It focuses on relations at the interpersonal
level. It does not recognise internalisation of stigma. Neither does it recognise the
contextual and the structural nature of stigma. This conceptualisation suggests that
stigma is modified as the disease progressed through different stages.
36

In contrast, Link and Phelan (2001) argue that stigma is composed of different
components. These components include labelling differences, association with
negative attributes, separation between the stigmatised person and the society and
status loss and discrimination. Similarly, Phelan et al (2008) suggest that stigma and
prejudice are like two sides of the same coin. While not writing specifically about
HIV, these concepts could be useful in understanding stigma. However, artificially
lumping them together may be counterproductive. It may be more expedient to
differentiate the labelling difference (stigma) from the reactions of the society to the
person with that difference (prejudice and discrimination). This differentiation will
make it easier to target the different actors that influence stigma.
Focusing on HIV in particular, Parker and Aggleton (2003) have made important
contributions to the discussion of stigma. They similarly look at interpersonal
relationships in stigma. They argue that the current complex and diverse
conceptualization of stigma, makes it difficult to grasp in a programmatically useful
way which could be used in the field of HIV. They attempt to link stigma to power
differentials. This argument may be valid if the possession of the discredited
stigmatised attribute is considered to disempower the individual.
However, suggesting that stigma only comes about when a group of people with
power exhibit authority over those without power is simplistic. Nevertheless, this
assertion may be useful in contexts where people infected with HIV also have some
disempowered

characteristics

such

as

being

poor

or

uneducated.

This

conceptualization could have implications in stigma reduction programmes. Instead

of focusing solely on the population at large who discriminate against the person with
the discredited label, efforts could be made to empower the people living with HIV to
overcome stigma.
Kurzban and Leary (2001) propose an evolutionary model to explain stigmatization.
Instead of focusing on the properties or stages of stigma as described in earlier
theories, they focus on the reasons behind societal reactions to the person with a
stigmatised attribute. They argue that stigmatisation comes about as the society
uses psychological processes designed by natural selection to avoid people with a
stigmatised attribute and join forces with normal people for competition and
exploitation purposes. In other words, stigmatisation is an evolutionary response for
37

the strong to survive. This can be seen when society tends to avoid people with
deadly communicable diseases in order to protect itself. However, a lot of
stigmatised diseases such as cancer or incontinence cannot be easily contracted.
HIV is also mainly spread through blood contact or intimate contact (such as sexual
intercourse).
Pescosolido et al (2008) made an ambitious attempt to merge all the former
theoretical frameworks from psychology, social science disciplines as well as stigma
and prejudice literature. The attempt provided a complex representation of a truly
complex problem. However, this kind of framework is not very helpful in developing
programmes which tackle stigma because of the level of complexity. However, their
approach is helpful in highlighting how the national and cultural context influences
stigma.
As Yang et al. (2007) suggest, public involvement in the moral obligation not to
stigmatize may assist in stigma reduction. This is however, only part of the strategy
to tackle stigma. Their insinuation that stigma feeds upon inequalities of class, race,
gender and sexuality is fraught with gaps when considering the fact that people may
have prejudiced attitudes to members of their own class, race or gender.

1.5.2.3 Critique of current stigma frameworks

As Parker and Aggleton (2003) and Genberg et al., (2008) argue, most of the studies
on stigma have focused on the individual and cognitive processes. They suggest that
there is a need for greater linkage of the social and political science to stigma. This
research attempts to do this. The link between stigma and the political, religious,
gender and economic context is further explained in chapter 6.
As Parker and Aggleton (2003) and Yang et al. (2007) argue, current stigma
frameworks need to take cognizance of the myriad of social forces that shape the
stigmatized process. Social institutions and the individual have a social symbiotic
relationship where one thrives on and affects the other. The institution is a structural
organisation of social responses. The institution represents the common response of
the community with regards to a particular phenomenon. In a community based
African context, it is difficult for the individuals to express themselves outside this

38

social framework. The family is the primary social institution. It is necessary and
expedient to target this institution if headway in stigma reduction should be made.
The conceptualisation of stigma developed in this research goes beyond the
individual level to examine the familial (interpersonal), community and organisational
domains of stigma. It looks at the structural and contextual dimensions of stigma and
the impact of not only the relationships, but also of the national context on stigma.
Mead (1934) suggests that societal reactions are not based solely on individual
forces. Rather, people tend to imitate social reactions from the media, families,
friends and other members of the community. He argues further that the individual is
shaped by the social institution in which s/he belongs. The mind can only express
itself under the influence of the social environment. As individuals adjust to the social
environments, they become different persons. Conversely, the community and social
environment is affected by the new person that the person becomes.
Different programmes can be planned to tackle different levels of stigma at different
points. As Brown et al., (2003) point out, current stigma reduction strategies tend to
focus on the individual level on the one hand or on the community level on the other
hand. These are often done in a non coordinated manner. The stigma framework
developed in this study, suggests a simpler and potentially more effective approach.
It is suggested that different strategies should be targeted at the individual, familial
(interpersonal), community, organisational levels. More information on how this
framework could be applied in tackling stigma is highlighted in chapter 7.
To my knowledge, no one has attempted to bridge or link progress in prejudice and
discrimination spheres, social marketing and health promotion to bear on tackling
stigma. Multiple approaches are advocated at different levels in the stigma typology
to tackle stigma. This strategy is different from others who have tried to coalesce or
amalgamate all the different aspects of stigma into a one size fits all framework.
More information on different strategies that can be used to tackle stigma is provided
in chapter 7 of this thesis. Below are renditions of stigma findings of the research.
They are organised along the lines of the stigma framework developed through
Grounded Theory analysis of research interview transcripts.

39

For success to occur in ARV treatment programmes, amongst other socio-cultural

factors, stigma needs to be taken into careful consideration. An extensive discussion
on stigma theories, the stigma related findings of this research and the stigma
framework developed in this research is undertaken in chapter 4.

1.5.3 Socio-cultural factors and access to healthcare

For the purpose of this research, social factors are defined as a complex whole
consisting of politics, economics, history and social interactions between actors and
society (Theodorson and Theodorson 1969:95). Social and cultural factors are
related to each other as social processes can be influenced and shaped by cultural
beliefs and practices. At the same time, culture is dynamic and can be transformed
over time with changes in social processes such as religion, political climate and
globalisation.

1.5.4 Specific socio-cultural issues in access in Nigeria

The unique influence of socio-cultural forces with regards to HIV treatment in Nigeria
needs to be further explored. Nigeria is a highly patriarchal society where women are
subordinated to men. The mix of culture, gender and HIV transmission is
demonstrated in the Eastern part of Nigeria. In this part of the country, a large sum of
money needs to be paid to the family of the bride before a marriage ceremony can
take place. This sum of money is known as the bride price. It could range from
around 450 to 5000 depending on factors such as the birthplace of the bride, the
socio economic status of the brides family and the educational attainment level of
the bride. Young men who are unable to afford the bride price have to work longer
and marry later in order to save up enough money (Isiugo-Abanihe 1995). During
this waiting time, they may engage in sexual intercourse with multiple partners and
increase their risk of contracting and/or transmitting HIV infection.
Cultural norms in some parts of Nigeria suggest that a woman must prove her fertility
before any marriage ceremony can be initiated. This form of natural fertility testing
means that women need to have sex with their potential marital partners in order to
get married. The woman will need to prove her fertility during the time scale of their
relationship. If there is a delay in the woman getting pregnant, the woman may be
abandoned for another fertile partner. Having different relationships with different
men in order to prove fertility increases the risk of HIV infection. Similarly, men who
40

move from one sexual relationship to another in search of a fertile partner, increase
their risk of acquiring and transmitting HIV infection.
Social expectations of patients to marry and reproduce need to be taken into
consideration in the planning of ARV access programmes. Hence, a more holistic
scope of management of HIV patients is needed. This needs to go beyond the
prescription of drugs or mechanically taking social history of patients to addressing
the structural barriers to accessing ARVs. Support should also be provided to
couples affected by HIV on how they can have healthy children.
The impact of culture on access to healthcare is complex and having insight into
these intricacies will help ensure better success in implementation programmes and
these socio-cultural issues are taken into consideration in this research (Agyepong
1992; Caldwell 1993; Szczepura 2005; Willard and Angelino 2008).

1.6 Comparable work in other parts of Africa

Considerable work has been done on social and cultural factors that affect the
accessing of treatment for children who have febrile illnesses such as malaria in
Africa. Intra-household relations between couples and extended family members
affect the decisions on the type of health care women use when their children have
malaria in Kenya and Ghana (Caldwell 1993; Mwenesi and Harpham 1995;
Molyneux et al. 2002; Tolhurst et al. 2008).
In these settings, authority on where to receive treatment is often a male prerogative
while support to care falls in the female domain. In the absence of the husband, the
mother-in-law and other elders frequently determine the type of healthcare
accessed. Other socio-cultural factors that may limit womens choices on health care
include lack of access to cash needed for treatment. It is important to consider the
influence of these socio-cultural practices in the planning of health programmes.
Tanner and Vlassor (1998) argue that health programmes should be tailored to the
unique local situation, considering the social and political context of a given area.
They also assert that failure of health programmes stem from inability to incorporate
multidisciplinary perspectives that take the socio-cultural context into consideration.

41

Earlier research offers valuable findings on intra-household bargaining in shaping

decisions to access treatment in Africa. Most of these studies focus on acute
illnesses. Infections such as malaria can be treated with over the counter medicines
from pharmacies or can be treated at primary health care centres. They often require
one-off contacts with the health care system. This is in contrast to HIV which is a
chronic, stigmatizing condition with specialist treatment provided at tertiary health
care centres. Patients also require continuous contact with the health care system.
Personal experience working as a physician in Nigeria, suggests that HIV treatment
is not currently available in most primary health care centres because of the lack of
staff training on ARV management, perceived risk of infection to health care staff,
high costs of the ARVs and poor prognosis of HIV infection.
It is important in ARV implementation programmes to identify how decisions to
access treatment are formed. Unlike acute febrile illnesses where extended family
members are informed about the illness and consulted on the type of treatment
received, it will be crucial to understand the socio-cultural dynamics that come into
play in shaping peoples decision on where to access health care considering the
need for confidentiality. The presence of these factors justifies the need for a study
on socio-cultural dynamics and access to antiretroviral treatment in Nigeria that is
lacking in the literature.

1.7 Access to ARVs in Nigeria: a comparative analysis

In this next section of the thesis, a review of current studies that investigate access
to health care in general and ARV therapy in particular is provided.

1.7.1 Individual level factors

Individual level factors include intrinsic factors which include age, sex and formal
education. Anderson et al. (2000) and Ntata (2007) demonstrate that most patients
that access ARVs are below the age of 40. This may be related to the
epidemiological trend whereby HIV infects mainly people of reproductive age
(UNAIDS 2004).
Being female has been shown to be a significant determinant of health care
utilisation (Kutzin 1993; Verbrugge 1985). In Pakistan, Shaikh and Hatcher (2005)
argue that where females are educated and have access to resources it is easier for

42

them to seek treatment early. On the other hand, where they are uneducated and
are dependent on their husband for resources, permission has to be sought before
they can seek treatment (Nanda 2002). In the USA, Anderson et al. (2000) suggest
that having formal secondary school education or more is associated with improved
access to ARV amongst African Americans. They also suggest that African
Americans are less likely to have early access to ARV therapy than Latinos and
whites.
Msellati et al. (2003) discovered that in Cote dIvoire, being male and having low
level of education is associated with restricted access to ARV treatment. Although
most of the studies describe the role that intrinsic factors play in affecting access,
they do not explain how and why they affect access. For example, Msellati et al.
(2003) do not explain why males have less access to ARV therapy than females in
Cote dIvoire. In Africa, women tend to access ARV therapy through Prevention of
Maternal to Child Transmission of HIV (PMTCT) programmes (Msellati 2009). When
ARVs are free, the numbers of women who access ARVs tend to increase. More
information and findings on why women access ARVs better than men are provided
in chapter 6.

1.7.2 Resource factors

Resource factors are means which patients can use to facilitate access. These
include access to money, transport, time to attend clinic, health insurance, family and
community support. There are studies that suggest that in USA, Thailand and Cote
dIvoire, patients with health insurance have improved access to ARV treatment
compared to those without (Keruli et al. 2002, Kitajima et al. 2005; Msillati et al.
2003).
Similarly, Desclaux (2004) and Mshana et al. (2006) suggest that inability of patients
to cater for drug costs remains a major barrier to ARV treatment in Senegal and
Tanzania respectively. Lack of financial resources for expensive laboratory testing
and purchase of drugs for opportunistic infections also impact negatively on access
to ARVs (Katzenstein et al. 2002; Msillati et al. 2003; HERFON 2007; Tamen et al.
2008). In a recent study, Agbonyitor (2009) suggests that poverty, as evidenced by

43

lack of access to money for food and transportation to health care still remains a
barrier to accessing antiretroviral treatment in Nigeria.
Rosen et al. (2007) in South Africa assert that even where cost of treatment is free,
cost of transportation may act as a barrier to access. Other reasons for impaired
access to healthcare include lack of means of transportation and the inability to take
time off work. Various strategies to mobilise funds for treatment include selling of
farm products/animals and borrowing of money from relatives (Attawall and Mundy
2003; Falkingham 2004; Ogunro et al. 2006).
A number of studies point to the important role that the economy and financial status
of patients play in influencing access to treatment. Ideally those who are eligible for
treatment and have the greatest need based on their symptoms and advanced HIV
infection staging should be given greater access to treatment. However studies show
that many vulnerable people who need ARVs do not necessarily have access to the
health care system (Anderson et al. 2000; Cunningham et al. 2000).

1.7.3 Socio-geographic factors

Charurat et al., (2010) argue, using retrospective analysis of patient records in
Nigeria, that it can be seen that many patients drop out of accessing their ARVs due
to non availability of ARV centres at the community level. The implication of break in
ARV treatment on individual health includes worsening of the patients health and
well being as a result of ensuing drug resistance (Forsythe 1997; USAID 2011;
UNAIDS 2011). Long distance to treatment centres serves as a disincentive for
accessing ARV therapy.

1.7.4 Health Care System factors

Most of the provision of ARVs is free at the tertiary health care level in Specialist
Teaching Hospitals located in urban areas in Nigeria. However, 62.3% of the
population live in rural areas (NCPCN 2003). Health facilities in rural areas do not
have ARVs or an acceptable number of adequately trained heath personnel (Oturu
2006). Hargeaves (2002:2030) similarly argues that there is need for basic health
care facilities in rural areas of Nigeria to be upgraded as autocratic, repressive
dictators and military rule, coupled with widespread corruption, have resulted in
large-scale neglect and deterioration of public services.

44

Unless ARV access centres are active and efficient in rural areas, ARV access for
all in Nigeria may continue to be a mirage. Abimiku et al. (2010) argue that there is
need to upgrade the laboratory facilities in Nigeria to cater for the increase in
demand for monitoring treatment of HIV positive patients.

Monjok et al. (2010)

similarly suggest that non availability of HIV drugs at ARV centres discourages
patients from being adherent to their drugs.
Part of the barriers to scaling up of ARVs in developing countries is the issue of
weak health care. Referral systems, human resource capacity, laboratory capacity,
supply chains and links with the community are undermined by weak, under funded
health care systems at national, district and local levels (WHO 2005). However,
increased global funding for AIDS programmes provide an opportunity to strengthen
health care systems and cater for other diseases. Innovative strategies are needed
to ensure that the funds are not used only for AIDS programmes in the short term,
but also to strengthen other aspects of the health care system.
Many public health initiatives are channelled through the public hospitals to the
exclusion of private clinics and hospitals which are closer to the community. As
Alubo (2001) suggests, the private health care sector may fill the gap left by low
quality public health services at the primary health care level. Although the private
sector could provide support for providing ARVs in Nigeria, studies conducted by
Ihekweazu and Starke (2005) and Olaleye et al. (2006) suggest that there are
significant gaps in the knowledge and practice of private health practitioners in the
management of HIV/AIDS. They suggest that there is need for proactive training of
private health care practitioners to treat HIV so as to reduce the pressure on tertiary
health care centres. This could go some way in reducing the pressure on state
funded programmes. Most of the donor funded programmes tend to favour working
with government hospitals. This may be due to negotiating stance of the Federal
Ministry of Health, which tends to favour government public funded hospitals than
private ones.
Schneider et al. (2006) report that lack of skilled health personnel in South Africa
negatively impacts on access. The complicated drug regime needs competent health
personnel who may need to change drugs when complications or resistance to

45

treatment occur. Hence there is need for training of health workers on administration
of ARVs especially in the rural areas (Pontali et al. 2003).
Boisseau et al. (2004) demonstrate that in French speaking Africa interrupted drug
supply impacts on access negatively. What is required is training of health personnel
in the management, logistics and distribution of medicines. Free ARVS should also
be made available in rural areas as well as pooled procurement and rational
prescription of drugs (Chaudhury 2000; Tarvene 2003).
The quality of care received at the health facility is also important as patients can
bypass nearby, free health facilities for more expensive ones of perceived better
quality (Donabedian 1980; Akin and Hutchinson 1999). Similarly, McPake et al.
(1999) argue that poor health service quality and informal charging of patients by
health workers was associated with poor utilisation of health facilities in Uganda. In
Nigeria, discriminatory behaviour by a minority of health professionals may also
contribute negatively to ARV access (PHR 2006).

1.8 Conclusion
In this thesis, various contemporary socio-cultural factors that impact on access are
discussed and suggestions are made as to how these factors can be taken into
consideration in implementation projects. These factors are linked to the emergent
social connection theory derived from the data which attempts to explain how people
mobilise social capital to access HIV treatment in Nigeria.
While much research focuses on the availability of health care structures and
personnel, it is also important to look at socio-cultural factors. The presence of
adequate health facilities may not necessarily result in improved access due to social
and cultural barriers. This research aims to examine this area and acknowledges the
role of socio-cultural issues in influencing access to treatment.
These studies point to the fact that access is a complex concept that has multiple
dimensions and determinants. In order to reduce HIV related stigma, it is important
that a good theoretical foundation is laid. This theoretical foundation will need to be
able to take cognisance of different structural factors that impact on access to ARVs.
In the next chapter, an analysis of the current access theories and frameworks is
undertaken.
46

Chapter 2

Review of Health Care Access Theories

2.0 Introduction: The usefulness of theory
In the previous chapter, the case was made as to the limitations of theories that
explain how patients access HIV treatment. In this current chapter, it is argued that
new theoretical approaches are needed to investigate access to HIV specifically.
There is a body of theoretical literature that examines access to the health care
services in general. In the first section of this chapter, the different theories on
access to the general health care system are reviewed and discussed. In the second
section of this chapter, the access theories are critiqued and it is explained why there
are limitations in applying them to data collected for this research. In the third
section, new theories developed from health promotion and structural literature are
analysed.
In the last section, it is argued that a socio-ecological framework (adapted from
health promotion discipline) may be more useful in improving access to ARVs as it
tackles health behaviour from different intervention points and takes cognisance of
external structural factors that can influence health behaviour. Although some of the
interpersonal level, community level and structural level theories are known across
different disciplines, to my knowledge they have not been specifically applied in a
coordinated manner on the issue of access to healthcare.
Kerlinger (1979) argues that a theory is a set of interrelated constructs that present a
systematic view of the phenomenon in question by specifying relations amongst the
various concepts with the purpose of explaining it. In this study, the phenomenon is
that of access to antiretroviral treatment. The use of theory in quantitative research
differs from its use in qualitative research. In quantitative research, the researcher
tests theories as an explanation of their research question (Cresswell 2003;
Rosenthal and Rosnow 2008). There is often an attempt to identify and find
relationships between independent variables that affect dependent variables.
Sometimes mediating variables interfere with the way independent variables affect
dependent ones (Cresswell 2003). In contrast, in qualitative research, theory may
potentially be used as a lens for investigating a study or it may be generated from
47

the data. As Ricketts and Goldsmith (2005) argue, policy oriented research on
access should give greater consideration to the adaptation of individuals and
populations who access treatment. Hence, in this study the characteristics of the
population that access treatment are selected and investigated intensely to develop
theory on how people in semiurban settings in resource poor settings (such as
Abuja, Nigeria), access HIV treatment. The effects of various structural factors such
as religion and politics on access are also taken into consideration in this research.

2.1 What is access?

Access is often viewed as an important concept in the study of organisations and
their delivery of health care services (Ricketts and Goldsmith 2005). Different access
frameworks have tended to focus on the health care delivery system and how it
interacts with the patients seeking care. In this thesis it is argued that there is a need
to investigate the demand side of access issues. Adequate health care systems may
not necessarily translate to increased access if the patients do not access treatment
for socio-cultural issues.
Dixon-Woods et. al. (2006) describe the synthetic construct of candidacy. They
define candidacy as a concept that describes how patients eligibility for healthcare is
determined by the patients and the health care system. Although they take
cognisance of context in health care access, they do not recognise the limitations of
generalising their synthetic construct of candidacy to other settings or different types
of diseases (For example, chronic versus acute, treatable versus incurable).
Although the synthetic construct is developed from UK based literature and may
apply to the UK, certain aspects may not necessarily apply to African settings such
as Nigeria. For example, unlike in the UK where the patient and health care
professionals collaboratively consider management options, in Nigeria the health
professional is seen as the expert, while the patient is supposed to accept whatever
management options are given to him/her. Although they suggest that critical
interpretive analysis can generate theory, they are not clear on proposing a theory
generated from their data.

48

An influential contribution of context in health care access has come from

Donabedian (1972) and Anderson (1974). They suggest that the proof of access is in
the use of the healthcare system. It does not matter if the health care structure and
processes are in place or available. As they argue, if patients do not utilise the health
care system, then they clearly do not have access. Donabedian (2003) suggests that
access is linked with the degree of ease with which people obtain health care
services. He attempts to cover the contextual aspect of access by suggesting that
there are two dimensions of access.
These are the socio-geographical and the organisational. The socio-demographic
includes, the socio-economic condition of the patients and the distance to the health
care facility (including the cost of travel). The organisational dimension includes the
organisational arrangements in the health care system that facilitate or impede
access. However, based on literature and data collected for this research, it appears
that the depth of analysis into the issues that stimulate patients to access health care
treatment are not dealt with sufficiently. He limits the concept of access by
suggesting that the proof of access is in use because the needs of the patients
adjust to the health care services. These concepts form the basis for some of the
access theories that explain how people access treatment. Access theoretical
models may be classified into social cognition models and sociological access
models.

2.2 Social Cognition Models

Social cognition models are access models that are based on the assumption that
health behaviours are determined primarily by cognitive factors. It is assumed that by
manipulating cognitive variables shown to be determinants of health, there can be
corresponding changes in health seeking behaviour. Social Cognition models include
the theory of planned behaviour and the health belief model. These models are
analysed in the next subsections.

2.2.1 The health belief model

With the health belief model, it is argued that health seeking behaviour is influenced
by the perceived threat of the disease, the motivation to worry about the disease and
the belief that the health care system can provide relief to the illness. Beliefs and
health motivations are influenced by socio-demographic variables, personality and
49

peer group pressure (Sheeran and Abraham 1995; Hausmann-Muela et al. 2003).
The first health belief model research is attributed to Hochbaum (1958). Hochbaum
(1958) discovered that patients who believed they were susceptible to acquiring
asymptomatic tuberculosis were more likely to attend chest x-ray screenings than
those that believed they were not (Sheeran and Abraham 1995). The model was
important for understanding the variation in health seeking behaviour and was an
early contribution to the debate on access.
However, the health belief model is simplistic as the threat of illness does not always
lead to a positive health seeking behaviour. There are also concerns about social
desirability bias with studies using the health belief model. When participants are
aware of the purpose of the study, they may exaggerate their stated beliefs and
behaviour to suit what is socially accepted. Rosenthal et al. (1992) also demonstrate
that there was no association between health belief model measures and young
mens HIV risk behaviour in Australia.
As Conner and Norman (1995) suggest, the model is static with no distinction
between a motivational stage dominated by cognitive variables and a volitional
phase where action is planned, performed and maintained. However, I suggest that
in the case of HIV, non cognitive emotional issues may override usual health
sustaining behaviour. For example in this PhD study, sero discordant couples chose
to remain together even though they knew that one partner was HIV positive, citing
love as a reason. Two other variables added to the model are clues to action. These
could be internal (such as disease symptoms) or external (such as media
campaigns, and advice from others). The precise way in which the variables
combine to produce behaviour has never been specified.
The health belief model tends to focus on the cognitive determinants of behaviour to
the exclusion of social determinants. It does not take the role of emotional factors in
influencing health seeking behaviour into consideration. It fails to take cognisance of
the importance of intention formation and the influence of other peoples approval on
participants health seeking behaviour (Conner and Norman 1995). I suggest that the
social determinants are also important and may have a stronger influence on health
seeking behaviour than cognitive beliefs.

50

2.2.2 The theory of planned behaviour

The theory of planned behaviour gives another perspective and suggests that
change of attitudes lead to specific behaviour change which in turn gives way to
good health outcomes. Like the health belief model these are based on sociodemographic variables and personality traits. The theory of planned behaviour
suggests that individuals make behavioural decisions based on cognitive processing
of available information. Rational cognitive processes are considered with the
exclusion of emotional processes that may have a more profound effect in
influencing behaviour in some individuals.
Conner and Sparks (1995) who are proponents of the theory suggest that if
individuals are intent in engaging in a particular behaviour, then that is the proximal
determinant of the behaviour. However, people may not always follow their
intentions. Other extra cognitive factors such as access to resources, skills and
opportunities may be needed as well for intention to translate to behaviour.
Intentions may also be changed when faced with the opportunity to practice a
particular behaviour. For example, a person intending not to engage in unprotected
sex may not follow the intention if she is emotionally involved with someone who
asks her to prove her fertility or love by having unprotected sex.
An important factor that needs to be included in the theory of planned behaviour is
the use of social support networks and peer pressure to stimulate positive behaviour
change (Conner and Sparks 1995). As Gillies (1998) argues, behaviour and
behaviour change does not occur in a social vacuum. Just as health is influenced by
social and/or structural drivers, so too are behaviours. The theory of planned
behaviour does not however, recognize the role of culture and social factors such as
religion and politics in shaping peoples health seeking behaviours.

51

2.3 Sociological access models

Sociological access models are those models that attempt to take the environmental
determinants which the patient passes to access treatment into account. These
models are analysed in the next subsections:

2.3.1 Aday and Andersons access framework

Aday and Andersons (1974) access framework appears to be the most cited
framework in access studies (Wolinksy and Johnson 1991; Phillips et al. 1998;
Hyman et al. 2001; Kataoka et al. 2002; Ricketts and Goldsmith 2005). They argue
that the study of access may be conceptualised as proceeding through five nodes
(Figure 2). These include health policy, characteristics of the health care system,
characteristics of the population at risk, consumer satisfaction and service utilisation.
Health policy denotes the strategies set in place to facilitate health care access. The
characteristics of the health care system consist of those health care components
necessary for service delivery. Characteristics of the population at risk denote those
variables that impact on the populations need and means to use the delivery
system.
The utilization mode denotes patient passage through the health care system. Aday
and Anderson (1974) suggest that consumer satisfaction is a key component to
access. Consumer satisfaction refers to the attitudes of the patients towards the
health care system. However, a patient may continue using the system although not
satisfied with the system. At the same time, a patient may be satisfied with the
system but may not use it due to other factors in the political, religious or cultural
context. In attempting to bridge the gap between the demand and supply side of
access, they developed a very broad framework of access.

52

However, the analysis of the various nodes becomes diluted with more emphasis on
actual utilisation of the health care service. Utilisation of health care especially for
HIV treatment (which is for life) may be continuous and so a single incident of
utilisation may not fully inform the issue of access. Aday and Anderson (1974) take
cognisance of political influence and policy on access.

Figure 2 Aday and Andersons (1974) Access Framework

Aday and Andersons (1974) Framework for the study of access

Although Anderson and Newman (1973) attempt to use a similar framework in
examining the role of families in access, this line of inquiry has not been followed in
other access research studies (Figure 3). This model is similar to Millmans (2003)
model. Millman (2003) argues that there are barriers in the community that the
individual overcomes in order to access treatment. Although this model is useful, it
still has an individualistic framework and does not recognise the role of socio-cultural
factors in influencing access to health care services.

53

Figure 3 Anderson and Newmans (1973) Model of Access

2.3.2 Andersons (1995) utilisation model

Anderson (1995) suggests that access is composed of predisposing, enabling and
need factors. Anderson revisits the earlier Aday and Andersons 1974 model which is
highlighted in Figure 4. Predisposing factors are intrinsic factors that can affect
access which include age, gender and education. Enabling factors include the
means such as financial resources and health insurance required to access
treatment (Howell and Trenholm 2007). Need factors denote the perceived need of
the individual to access health care.

Figure 4 Andersons (1995) Model of Access to health care

54

Recent versions have included new elements to reflect the role health care systems
play in influencing access. There have been attempts to identify process indicators
such as regular source of care, travel time to care, ability to get an appointment in
reasonable time and office waiting time (Ricketts and Goldsmith 2005). However,
findings from this research suggest that there are individuals that travel far for
treatment so that people close to them will not know that they are HIV positive. They
do not mind waiting long hours in the clinic to see a doctor and might continue using
a service even though they are not satisfied with it.
In the model, patients are assumed to be rational people who perceive symptoms as
threats and accept the health care system as the appropriate agency to remove the
threat. However, some studies have shown weak relationships between beliefs and
attitudes with health care behaviour (Patrick et al. 2006). This model also places a
narrow focus on individual states and disregards the role of the political and socioeconomic context. It does not consider the role of civic engagement in facilitating
health care access (Hendryx et al. 2002). More information on the role of civic
engagement in facilitating access to ARVs is provided in the chapter on social
connections (Chapter 5).

2.3.3 The dynamic response framework

McPake et al. (2004) conceptualises access as a set of dynamic responses that sits
between the de- jure health services and de-facto outcomes which are observed.
The de- jure system comprises of organisational structures, intended incentives and
management procedures. The de- facto outcomes include the services actually
experienced by vulnerable patients and the quality of service.
The dynamic responses include informal structures such as community groups,
informal behaviour and informal relationships. This framework is useful in
recognizing the way in which decision making is socially embedded. However, it
does not give enough weight to broader socio-cultural practices that affect access to
treatment. Additionally, it could be argued that the access process starts even before
the patient gets to the hospital to utilise the service. Social connections that occur
outside the hospital are equally as important as those within the hospital. However,
some strands from this framework link with the general argument about the effects of
social networks on access.
55

2.3.4 Penchansky and Thomas (1981) Framework

Penchansky and Thomass (1981) framework was developed to link patients
demand for health care and health care supply in the definition of access. They view
access as occurring when there is a fit between patients health needs and the
health care systems ability to meet those needs. They argue that access occurs
when there is a fit of the interaction of the various access dimensions. They argue
that there are five (5) dimensions of access. These are availability (volume of health
care service), accessibility (geographic relationship between providers and users of
care), accommodation (clinic hours, waiting time), affordability (financial ability of
patients to use care provided) and acceptability (attitudes of patients and providers
of health service). In other words, using economic terms, when there is a fit between
demand and supply, there is access. When supply outstrips demand or vice versa,
then the integrity of access is affected. They do not recognise the role of social
factors, power differentials and the influence of different cultural beliefs on access.
The role of family members and social contacts also need to be acknowledged.

2.3.5 The model of the 4 As

The 4 As model views health seeking behaviour as dependent on accessibility
issues (such as good roads), availability (location of health centres), affordability
(including cost of treatment and transportation) and acceptability which relates to the
acceptance of health service (Hausmann-Muela et al. 2003). The model helps
identify of obstacles to treatment. These concepts are similar to those advocated by
Aday and Anderson (1981) who differentiate potential access (which is the presence
of adequate health care systems to cater for the needs of patients) and realised
access (which is the actual utilisation of the health care system). However the model
does not recognise the role of politics, religion and cultural influences that are
present in influencing access to treatment. It also focuses more on barriers rather
than on positive factors that could facilitate access to treatment.
Frenk (1992) draws on 4As framework and tries to clarify the various poorly defined
domains for access (Figure 5). He argues that access could be conceptualised along
a narrow immediate domain and a broader domain. He differentiates accessibility,
which is the possibility of a person receiving care that is needed, from availability
which is the existence of healthcare resources for patients. However, Frenk (1992)

56

focuses mainly on care and not on the impact of care and treatment. This model may
provide a foundation for introducing pathway models of access.
Figure 5 Frenks Access Framework

2.3.6 Pathway models

Pathway models monitor the pathways that people follow from the moment of
experiencing disease symptoms to the various health services that they utilize
(Hausmann-Muela et al. 2003). These could include traditional healers, over the
counter drug shops, self treatment and formal health facilities. The importance of the
influence of community norms, support groups, families, friends and peers in
decision making is acknowledged. Due to the chronic nature of HIV, the need for
confidentiality and the emotional trauma the patient may be passing through, it may
be difficult using this for ARV access studies prospectively. However, attempts were
made in this study to draw on this model and retrospectively trace the pathways that
participants in this study passed through in accessing ARVs. Possible stages that
participants pass through to access are identified in this research and organised in a
theoretical code in chapter 5.

2.3.7 Ethnographic decision-making models

The ethnographic decision-making model is a different way of examining access to
treatment. It involves the researcher living with the sample population and attempting
to predict health-seeking behaviour. The researcher creates different hypothetical
scenarios to test different factors that affect access to treatment (Gladwin 1989). The
researcher observes the participants of the study and how they react to different
health situations. Again, due to the chronic nature of HIV infection and the emotional
trauma the patient may be passing through, it may be difficult and ethically
challenging observing how HIV patients decide on different treatment options within

57

the timeframe of a PhD study. It may take years for patients to pass through the
different treatment options.

2.3.8 The Institute of Medicine Framework

The Institute of Medicine (IOM) of the USA proposes a recent conceptualisation of
access to health care that contrasts with earlier theoretical frameworks. They
propose that emphasis should be placed not just on patients utilising the health care
service, but also on positive health changes after the patient has utilised the service.
There is an emphasis on outcome and not just the process. The limitations of the
framework include the difficulty of assessing the effectiveness and technical quality
of the health intervention.
The framework does not take into consideration the variations of patterns of use
amongst different populations (Millman 1993; Travassos and Martins 2004). The
World Health Organization similarly argues that effective coverage is defined as the
proportion of the population that need a specific health care procedure and who
effectively receives this procedure. This opens up the debate of what need is and
who defines who is in need. Ironically, the information on who needs access may not
be easily available.

2.4 Limitations of current theoretical frameworks on access

Due to the sensitive nature of HIV/AIDS and social factors such as stigma, general
healthcare access frameworks may not readily apply. Most of the frameworks do not
include emotional and non rational behaviour as important factors that may underpin
access to health care. They also do not acknowledge the influence of political and
social factors in controlling health seeking behaviour. Most of the frameworks on
access have psychological underpinnings and do not focus on socio-cultural factors
that have an influence on access.
For instance in Aday and Adays (1974) broad framework, various nodes are used to
investigate access to health care. Applying this kind of framework in a study may
result in a broad array of descriptive results but with very superficial analysis. It is
usually used in quantitative studies where parameters are set to study the impact of
the various aspects on access (Kleiman et al. 1981; Leiu et al. 1993; Kasper 1998).
There is an overemphasis on the individual patient and individual encounters with

58

the health care system. They attempt to capture the patient-health care provider
interaction but do not acknowledge the role of other social actors in the community in
affecting access to the health care system. The frameworks also appear to have a
bias towards attempts to measure quantitatively rather than gaining in depth
understanding on the drivers of access. The frameworks have tended to focus on
outcome measures of utilisation and consumer satisfaction. Aday and Anderson
(1974) place more emphasis on the individual accessing treatment rather than on the
social capital that could enable peoples access to treatment. Although Anderson
and Newman (1973) attempt to capture the role of the family on influencing access,
focusing on the family alone limits the potential role of friends, peers, religious
leaders and even new acquaintances in access.
These studies do not capture the intricate interactions between patients, families, the
community and the interplay of socio-cultural factors in shaping the decisions made
in accessing health care (Kasper 1998; Marsha 1998; Hendryx et al. 2002; Davidson
et al. 2004; Mackian et al. 2004). Even if it is argued that cognitive beliefs could
influence behaviour, as Mirowsky and Ross (2003) demonstrate, psychological
responses are ultimately the result of the impact of social forces.
The current trend in health systems research also focuses on use of disease specific
studies that look at the issues related to particular diseases rather than using one
framework for all kinds of diseases (Kasper 1998). This kind of in-depth analysis is
needed in HIV treatment studies which have distinct features such as stigma
surrounding them. In this research, the focus is on the social drivers within the
characteristics of the population that influence access to HIV treatment in Nigeria.
Many of the frameworks have been developed using Western concepts which may
not necessarily be relevant to an African setting. Although they propose that changes
to cognition can lead to changes in behaviour, they do not identify the best ways for
cognitions to be changed.
Much of health care provision in Western countries is funded by private and/or public
health care insurance. This is in contrast with Africa where the bulk of health care
financing is through the use of user fees. Although public health insurance is
gradually being introduced, with the National Health Insurance Scheme (NHIS)
currently being piloted with some Nigerian civil servants, the majority of Nigerians do
59

not have health insurance. Federal Government employees appear to have greater
access to the Nigerian health care insurance than State and Local Government
employees as NHIS is included in the working conditions of Federal Government
employees (Agba et al. 2010).
Some of the theoretical frameworks focus on supply side of the equation. At the
other extreme, some frameworks attempt to focus on entry into the health care
system and outcome. Viewing access as an outcome measure makes the concept
multidimensional and difficult to operationalize. Also, focusing on outcomes alone will
conceal some of the important social interactions that occur in the process of access.
As Goddard and Smith (2001) and Gold (1998) argue, there is need to look at
demand side factors from the patients perspective against the background of the
socio-cultural context in which access takes place. They suggest that the ability for
people to obtain health information through community and social networks may
encourage people to access the health care system.
In order to improve access, it may be important to look beyond individual level
theories that focus on the individual to other theories (interpersonal), community
level and structural level theories. The individual based decisions are often shaped
by contextual factors over which the individual has no control over. It may be more
expedient to utilise other theories that have been demonstrated to influence health
behaviour. The next group of theories have been borrowed from health promotion
discipline. Some advances in health promotion fields have shown that influences at
the interpersonal and community level can influence health behaviour. This group of
theories may also be adapted to influence positive health seeking behaviour.

2.5 Interpersonal theories

There is need to harness the power of relationships between the patient and those
close to him/her to promote positive health behaviour. In the interpersonal domain is
the Social Cognition Theory. The Social Cognition Theory has been advocated as 3
way dynamic reciprocal explanation of how personal factors, environmental
influences and behaviour continually interact. It is seen as a process. The patient
passes through the stages of behaviour capacity, reciprocal determinism,
expectations, self-efficacy, observational learning and reinforcement. It was
previously known as the Social Learning Theory.
60

However, Bandura (1986) added the self-efficacy component and renamed it as the
Social Cognition Theory. The self-efficacy component again focuses on the
individuals sense of personal agency to change behaviour when faced with
obstacles

through

goals

and

outcome

expectancies.

Integrating

different

behavioural, cognitive and emotional constructs, it will be very difficult to use in an

African intervention programme where there is not much psychological support.
While it is a useful entry into the debate of undertaking health promotion at the
interpersonal level, it is deterministic. This suggests that the patient passively learns
behaviour from those around him/her and becomes self dependent in changing
his/her behaviour.
Although used in this thesis in the context of accessing the health care system, it
may be useful in other health interventions as well. In other words, the individual is
influenced by those around him/her to undertake positive health changes. The social
forces are not only important in helping the individual learn but also to support the
individual as s/he navigates the process of change. At a broader level are community
level theories that have potential to influence whole community using group effects.

2.6 Community level theories

Community level theories are theories that are able to influence members of the
community and organisations. They are able to make changes in current contextual
structures. They include organisational change theory, communication theory and
community organisation theory.

2.6.1 Organisational change theory

Organisational change theory is useful for understanding organisational and
institutional stigmatisation. It is involved with the formulation of processes and
strategies that provide positive changes in healthy policies and programmes within
organisations. The stages involved include problem definition (where awareness of
the change to be made is highlighted), initiation of action (where changes are
adopted), and implementation of the change and institutionalisation of the change.

61

There is need for organisational change from the donor level down to the ARV
centres that provide the ARVs. Lewin (1951) argues that for organisational change to
occur, changes need to pass through three phases. These include unfreezing
(whereby organisational change policies are made and communicated to the
healthcare workers), changing (whereby the workers begin to adjust and make the
changes) and refreezing (where new changes are made permanent). As he argues,
the refreezing component is important to prevent the workers in the organisation
lapsing back to old ways of doing things. Lewins model has been critiqued as being
slow and hence may be irrelevant in the current global trend of change happening at
a faster rate.
Hence, Leana and Barry (2000) write that what is needed are organisations that are
flexible and change quickly in response to global political and economic forces.
However, due to the far reaching impact structural changes may have and the
unknown unintended consequences of the changes, a slower approach may be
needed in terms of making changes in the health care system in Nigeria. As Robbins
et al. (2011) propose, drastic changes can lead to resistance from the health care
actors as a result of fear of the unknown, fear of losing perceived old valuable ways
of doing things and belief that change is not good. Lewin (1951) argues that in order
for change to take place, there needs to be driving internal and external forces for
change. These are often concerned with improving quality and effectiveness of the
health care system.
There are different opinions regarding the importance of change being driven
through a top-down strategic approach or from bottom-up (Leana and Barry 2000).
Undertaking changes from a top-down approach may fail if healthcare workers on
the ground are resistant to the change. Conversely, undertaking change from the
bottom-up without involving the policy makers and bureaucrats may lead to political
resistance. What may be effective is an approach that utilizes a combination of
bottom-up and top-down change strategies. This will firstly involve the policy actors
that formulate and enforce health care policy and health care workers that
operationalise the policies.

62

As Quinn (1988) argues, such changes should be incremental and require a lot of
political skills. The support of policy makers at the strategic level is needed for any
change to be effective operationally. Personal experience undertaking health care
research suggests that health care workers at the operational level tend to feel
fearful of undertaking any change that does not have support from the Federal
Ministry of Health. Consultations need to be made with senior managers and
operational health care workers regarding implementation and the impact of change.
As Thompson (2001) proposes, the presence of change agents at the worker level of
operations may be crucial in undertaking and sustaining change. This theory is in
contrast to the diffusion of innovation theory, where it is argued that changes in one
community can affect other communities. The impact of change across community is
important with globalisation and social networking.

2.6.2 Diffusion of innovation theory

Related to the organisational change theory is the diffusion of innovations theory.
With the diffusion of innovation theory, Rogers (1995) argues that new ideas and
social practices can be spread within a society or from one society to another. He
suggests that changes can be made in communities through the diffusion of
innovative knowledge from one community to another. There is need however, for
the ideas to be home grown taking the unique socio-cultural context into
consideration while learning from advances made in other similar societies.
Nevertheless, practices from programmes in one African country may be relevant in
another African country having similar culture. Allowances have to be made for
subtle differences such as political systems, health systems and health funding
mechanisms. As Croyle (2005) argues, in order for the innovative strategy to be
used in another social setting, some key attributes need to be present. These are
relative advantage (the innovation should be proved to be superior to whatever it
replaces), compatibility (it should be appropriate for the new social context),
complexity (it should be relatively easy to implement the innovation), trialability (it
should be able to be tried experimentally), and observability (the innovation should
produce tangible results).

63

Effective diffusion of the innovation requires both formal and informal communication
channels. Information from the mass media needs to move to the opinion leaders
who pay close attention to the media and convey their interpretations to others. Their
social connections may be important in determining who gets the information and
how the information is communicated.

2.6.3 Communication theory

Communication theory explores who says what, in which channels to whom and with
what effects (Miller 2005). Public health communication is concerned with the
strategic dissemination of understandable health information in such a way as to
advance the publics health. Most of the public health communication has been via
the print and mass media. Due to the high costs of airing public messages by the
media, these are usually focused on public service announcements and during news
coverage on public health issues.
These are often funded by governments or international donor agencies. Bill boards,
radio and television jingles are also used to communicate public health messages.
Current public health communication focuses on changing health behaviour.
However, other innovative communication techniques are currently needed that go
beyond the individual to effect changes in the environment and structural forces that
shape peoples behaviours. Examples include new social network sites such as
Facebook and Twitter.
The mass media is crucial in focusing attention to public health issues and bringing
them onto the policy agenda. Various processes through which the mass media
does this include agenda setting (where the media define, select and emphasize
issues), public agenda setting (where the issues are linked to the publics priorities),
policy agenda setting (where the media cover strategies to educate or pressurise
policy makers into making social or structural changes that promote health), problem
definition, (where different stakeholders and institutions identify the issue as an
important problem), and framing (whereby certain aspects of the policy are
highlighted with the exclusion of others).

64

As Croyle (2005, pp. 5) from the US National Cancer Institute suggests, using theory
as the foundation for programme development is consistent with current emphasis
on using evidence-based interventions in health. Apart from explaining the dynamics
of health behaviour, theories can also include processes that change them through
the influence of many forces at the individual, personal, community and structural
level.
A summary of the different theories underpinning health promotion is provided in
table 3. The table highlights the different health promotion theories and their areas of
focus. In table 4, the definitions of different health promotion concepts are also
provided.
Table 3 Health promotion theories from Croyle (2005)

65

Table 4 Definition of health promotion concepts, adapted from Croyle (2005)

Concept

Definition

Intrapersonal Level

Individual characteristics that

influence behavior, such as
knowledge, attitudes, beliefs, and
personality traits
Interpersonal processes and
primary groups, including family,
friends, and peers that provide
social identity, support and role
definition

Interpersonal Level

Community Level

Community meetings, focus group

discussions, film shows, drama, role
play, bill boards, music campaigns.

Institutional Factors

Rules, regulations, policies and

informal structures, which may
constrain or promote
recommended behaviours

Community Factors

Social networks and norms, or

standards, which exist as formal or
informal among individuals, groups
and organizations.

Public policy

Local, state, and federal policies and

laws that regulate
or support healthy actions and practices
for disease
prevention, early detection, control,
and management

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Accessing the health care system is a manifestation of health seeking behaviour.

Theory gives planners the tools for moving beyond intuition to construct effective
health interventions. This may require targeting different actors and social structures
at different levels. Using the context of reproductive health, Rice (1996) similarly
argues that for reproductive health promotion to be effective, multiple levels of
society and different audiences need to be targeted in a coordinated manner. In
order for ARV access programmes to be effective, theoretical positions underlying
the strategies need to be relevant for the context which they are being planned for.
However, a lot of strategies imported into Africa are based on strategies that have
worked in contexts that are different socio-economically and culturally from that of
Africa. In the African context, there are strong family and social networks. It is these
networks that help people cope in the face of poverty and poor health. Moving on to
another level of influence are community organisation theories that argue for the
mobilisation of communities for change. Social connections may still be needed to
link with various community groups that can be used as channels for change.

2.6.4 Community Organisation theory

Within community organisation theory, Croyle (2005) suggests that for positive
changes in the individual to occur, there needs to be an emphasis on active
participation and development of communities to enable them to better evaluate and
solve their health and social problems. As Parker (1996) argues drawing more
extensive experience and analysis of behavioural and social research articles,
community mobilisation is essential in the prevention of the spread of HIV. He
argues that there is a paradigm shift in programmes from those geared at changes in
individual risk behaviour to models aimed at community mobilization and
empowerment. He suggests that broader social changes aimed at addressing
structures of inequality, intolerance and injustices are important in the fight against
HIV.
As part of the strategies to tackle stigma and other barriers to access, community
participation should be encouraged. With community organisation theory, Rothman
(2000) argues that it is critical to learn about the communitys unique characteristics
which may go beyond geographical location. For example the different community
stakeholders may have different influences in different social contexts. Of importance
67

in the Nigerian context, are religious institutions. Religious leaders need to undergo
training on the need to support PLWHA at the individual and community level. A
discussion on the role that religious leaders play in influencing stigma and access to
ARVs is provided in chapter 5.
Related concepts at the community level are community empowerment (through
provision of information and resources for change) and community participation (in
issue selection and critical consciousness). Fetterman et al. (1996) suggest that
empowerment and participation are social action processes which communities gain
confidence and skills to improve their quality of life through their active participation.
With this empowerment, the community may be able to ensure that relevant issues
are placed on the intervention agenda based on shared needs and power. However,
the community may be conservative and narrow in choices (Wallerstein 1992;
Fawcett et al. 2000). They may need to be persuaded about the importance of
certain issues on the policy agenda. For example, informal interviews with some
politicians in Nigeria suggest that community members in their constituencies do not
care about HIV and are more interested in things that they can see (such as hospital
buildings).
It is important not to only to consult the community but to actively steer them in the
right direction (Fisher 1997). Personal experience working as a project manager for a
European Union health care project in Nigeria, suggests that community members
often do not know what change they want and tend to be dependent on donors to
steer where they should go.

2.7 Theories on structural factors and HIV

Structural forces are more subtle and constant with long term implications. Coates et
al. (2008) demonstrate that individual level behavioural strategies are limited in
influencing positive sexual health behaviour in a contextual environment where the
broader structural issues are not conducive. Geeta Rao Gupta is an important
contributor to the debate on structural factors and HIV and convener of the social
drivers committee of the AIDS 2031 organisation. Along with other researchers, she
suggests that deeply entrenched social, economic and political factors such as
income inequality and social marginalisation can increase risk and vulnerability to
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HIV infection (Gupta et al. 2008). Structural determinants such as gender based
violence and rural urban migration for work have been demonstrated to increase
contextual vulnerability and consequently individual risk to HIV transmission
(Anderson et al. 2000). Issues such as gender, power and policy can have a
stronger effect in influencing health behaviour compared to provision of behaviour
change messages.
As Rhodes and Simic (2005) argue, using Eastern Europe as a case study, the risk
environment (structural) approach to HIV could help develop prevention and coping
strategies that emphasise structural environmental change that may be more
effective than individualistic behavioural strategies. I argue that this argument is also
applicable in the area of HIV treatment. Taking structural issues into consideration in
the planning of ARV access programmes in particular and Health programmes in
general may lead to more effective programmes. Individual behaviours may be
shaped by structural norms and beliefs in the society. Structural forces can bring
about positive or negative behavioural changes, including access to ARVs. In the
next section, the different structural theories that are important to HIV are discussed.
Further information on how structural factors were found to influence access to
ARVS from this study is presented in chapter 6.

2.7.1 Barnett and Whiteside theoretical model

Barnett and Whiteside (2006) argue that countries with high social cohesion and high
wealth have low HIV prevalence rates. In contrast, countries with low social cohesion
and low wealth, have high HIV prevalence rates. This is demonstrated in countries
like the United Kingdom that have high wealth (in terms of gross domestic product)
and high social cohesion (in terms of relative peace and social stability). This is in
contrast to countries like Nigeria that have low wealth and low social cohesion
(evidenced by religious riots, tribalism and social unrest in oil producing states of the
country).
Barnett and Whiteside (2006) divide structural factors into distal factors and proximal
factors. They argue that the factors occur along a continuum. Distal factors are
macro environmental factors such as national economic context, gender inequality,
culture and governance. Proximal micro environmental factors include migration and
urbanisation. The micro environmental factors are linked to the macro economic
69

factors. Both need to be taken into consideration to analyse structural issues. For
example national housing policies at the macro environmental level, may influence
the building of new cities in localities at the micro environmental level, thus providing
a stimulus for migration. Conversely, rapid urbanisation at the micro environmental
level may influence national policy to provide funding for more housing or health
services in the urban areas.
Barnett and Whiteside (2006) differentiate vulnerability and individual risk of
contracting HIV. Vulnerability refers to contextual factors that make a person prone
to HIV infection. This is often linked to geographical location. This is in contrast to
risk which is dependent on individual behaviour. However, more important than the
behaviour is the context in which the high risk behaviour takes place. As Barnett and
Whiteside (2006) argue, health behaviour of people is shaped by contextual products
of history, culture, society and the economy.
To address health seeking behaviour without looking at the context that influences
the health seeking behaviour could be counterproductive. In other words, the context
under which risky sexual behaviour occurs may be more important than the risky
sexual behaviour itself. For example, Scotland (United Kingdom) has one of the
highest teenage pregnancy rates in Europe. According to the Information and
Statistics department of the National Health Care Service, the teenage pregnancy
rates for under 18s was 40.4 per 1,000 in 2008 (HPA 2010). The UK also has a very
high STI rate. According to the Scottish Health Protection Agency, the total number
of patients (males and females) presenting with sexually transmitted Infections
(STIs) has risen exponentially from 5000 in 1999 to 170,000 in 2008 (HPA 2010).
However, HIV prevalence rate in the UK is very low. There is an estimate of 91,500
people living with HIV in the UK. This translates to about 1.5 per 1000 of the UK
population (Avert 20011, HPA 2011).
However, the structural issues such as free health care provided by the National
Health Service (NHS), education and access to financial resources makes it is easier
for residents in the UK to access treatment for sexually transmitted infections (STIs)
compared to people in the developing world. The treatment of STIs reduces risk of
HIV infection (Laga 1995). This is in contrast to countries like Nigeria, where patients
with STIs may not go for treatment due to poverty or shame (Okonofua et al. 1998).
70

Mmari et al. (2010) similarly demonstrate in their retrospective study that poor
women in Nigeria were unable to access treatment for STIs or access reproductive
health information.

This increased their risk of contracting HIV. As Barnett and

Whiteside (2006) argue, vulnerable contexts provide a fertile ground for the spread
of HIV.
An exception to Barnett and Whitesides (2006) theory includes countries like
Botswana for example, which has high social cohesion and high wealth, but also
have a high HIV prevalence rate of 33% (UNAIDS 2009). As they suggest, this may
be due to inequality in access to wealth which drives rural urban migratory patterns
and risky sexual behaviour which increases vulnerability to HIV infection. Although
Botswana is one of the fast growing economies of the world, the richest 20% of the
population receive 59% of the income (Barnett and Whiteside 2006). South Africa, a
country with the largest Gross Domestic Product (GDP) in Africa also has an HIV
prevalence rate of 18.1% (UNAIDS 2009). Different cultural and health management
practices across different African and Western countries may also contribute to
differences in prevalence rates between countries. Although their theoretical
framework is helpful in demonstrating the link between poverty and HIV prevalence
rates, HIV prevalence rates are influenced by multiple factors and may not be
dependent on only two variables.
The appropriate use of health services is influenced by complex social and cultural
attitudes and practices. Other factors may be important as well. As Farmer (2001)
demonstrates using data from Haiti, it is inequality even in the midst of wealth, which
could provide an environment for the spread of HIV to thrive.

2.7.2 Sweat and Denisons model

Sweat and Denison (1995), offer a similar model where they advocate a typological
theoretical framework that organises HIV structural factors at four levels. These
include individual, environmental, structural and super structural levels. They argue
that super structural factors such as economic underdevelopment, sexism and
racism occur at the highest structural level. They influence national cultural norms
and macro political arrangements.

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Mann and Tarantola (1998) suggest that social vulnerabilities such as stigma and
discrimination facilitate the spread of HIV. Structural level interventions could include
programmatic considerations for education and social services within health care
systems. Structural interventions may also stand as a barrier to effective HIV
programmes. For example, structural interventions restricting travel of HIV infected
persons from vulnerable countries may increase stigmatisation of national groups.
Zierler and Krieger (1997) using epidemiological data of HIV infected women in the
United States of America demonstrate that gender inequality and racism contributes
in driving the HIV epidemic. Gould (1993) similarly demonstrates that income and
gender inequality influence migration and increase in HIV prevalence. Structural
factors include laws, policies and programmes (such as provision of education and
social services within health care systems). Many of the relevant institutions have
been resistant to changing such laws and policies, but mechanisms for change have
come through lobbying and human rights activism. For example, laws that make it
mandatory for commercial sex workers to use condoms in brothels have been
demonstrated to reduce HIV incidence in the United States of America (Sumartojo
2000).
Environmental factors include living conditions and resources of individuals. DiezRoux (1998) similarly argues that there is need to move away from individual level
variables to cover contextual or multilevel analysis to gain a better understanding of
the spread of disease. In the same vein, Tawil et al. (1995) argue that enabling
approaches that incorporate favourable policies and economic conditions may help
limit the spread of HIV (see table 5). In table 5, different structural elements as
defined by different researchers are highlighted and compared.
Environmental factors may also include work stations in urban areas that separate
men from their family and provide access to commercial sex. Individual level factors
include individual reactions from the individual as a result on the influence of the
other structural levels. For example, poverty and migration to a different
geographical location may lead an individual to become lonely and isolated with
increased sexual urges that increases risk of HIV infection (Sweat and Dennison
1995).

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Table 5 Structural HIV prevention frameworks from Sweat and Denison (1995)

Framework
author(s)

Individual
micro-level

Diez-Rouk

Structural
Intermediatelevel

Structural macro-level

Area-based
treatment
centre, and
neighbourhood
characteristics,
poverty and
deprivation

Socio-economic status of
populations

Super structural economic

underdevelopment, gender
inequality

Sweat and
Denison

Individual level
knowledge of
HIV risk and
prevention

Structural level
laws, policies,
standard
operating
procedures,
environmental
conditions and
resources of
individuals

Tawil et al.

Economic
conditions or
policies,
targeted in
prevention
programmes

Economic
conditions or
policies

Mann and
Tarantola

Personal
vulnerabilities
such as
knowledge and
skills

Pragmatic
vulnerabilities
such as
education and
social services

Zierler and
krieher

Societal vulnerabilities such

as discrimination of
HIV-positive

Class, race, gender,

sexuality inequalities

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2.8 The socio ecological framework

A broad theoretical framework that could be used in this manner, is the socioecological framework borrowed from health promotion. Stigma needs to be tackled at
both the individual and collective level. Structural issues need not be just mentioned
in passing and ignored. They need to be taken into consideration in the planning of
health care services. The private health care sector also needs to be included.
Influencing positive health seeking behaviour requires strategies that transcend the
individual domain to that of the interpersonal, community and structural levels of
intervention. Recent advances in health promotion have led to the development of a
socio ecological framework that takes cognisance of not only the individual patient
but also to the interpersonal, physical (living conditions) and social environmental
(institutional/organisational and public policy), context in which the patient lives
(Smedley and Syme 2000, Figure 6).
Figure 6 Multi-level Socio-ecological framework from Croyle (2005)

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The

ecological

perspective

emphasizes

the

interaction

between

and

interdependence of factors across the different domains. The two key concepts in
the ecological framework that influence health behaviour are multiple levels of
influence and reciprocal causation of human behaviour by the structural
environment. There is no one main level of influence. Instead, there is a multiplicity
of influences with the structural influences playing a stronger role.
At the individual level, a patient may refuse to access ARVs because of shame of
exposure. At the interpersonal level, family members or friends may advise the
patient to access herbs or spiritual therapy instead of ARVs. At the organisational
level, the scheduling of appointments very early in the morning and the loss of
confidentiality in the mass treatment of HIV patients may serve as a deterrent to
accessing HIV treatment. At the institutional level, the non comprehensive nature of
HIV treatment means that people that are on ARVs and need treatment for other non
HIV related diseases are tossed to and from the GP to the HIV specialist in an
uncoordinated manner that serves as a disincentive.
At the health policy level, the decision for patients to pay consultation fees or the
costs of HIV laboratory tests may stop people from accessing treatment. The
reciprocal component suggests that people influence their environment and in turn
are influenced by their environment. For example, a patient who is told to eat
healthily and access his/her ARVs may be unable to do this because of poverty. If he
is a civil servant, he may be unable to get some days off to attend to his ARVs if he
is accessing his drugs secretly.
An environment of stigmatisation and discrimination in the workplace may compel a
patient not to take or access his/her ARVs when due. More information on how
stigma affects access to ARVs is provided in chapter 4. Any effective response will
require a multi-disciplinary, multi-sectoral approach that includes the government,
the commercial sector, the media, faith based groups, civil society organisations and
community based groups. The importance of these groups in influencing access to
ARVs is provided in chapter 5. Strategies on how these different groups can work
collaboratively to reduce stigma and improve access is provided in chapter 7.

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An ecological approach suggests that instead of using one approach, a coordinated

multilevel

approach

that

combines

individual

behavioural

and

environmental/structural components may be more effective. Evidence of this has

been seen in anti smoking programmes where the formulation of non public smoking
policies, laws prohibiting sales of tobacco to minors and peer disapproval of smoking
contribute to successful anti smoking programmes (Croyle 2005).

2.9 Conclusion
The various access frameworks provide lenses through which access to health care
can be viewed. Some of them focus on the individual patient without taking
cognizance of the available social capital and broader social context. Although the
individual patient ultimately decides how and when to access treatment, this is often
influenced by social actors and the wider social context. This study attempts to
harness the power in interpersonal relationships and the external social context to
access ARVs and possibly support good health care behaviour. The socio ecological
framework is advocated as a broad framework that is able to combine the theories at
different intervention point to bear on improving access to ARV therapy. More
information on the operationalisation of this framework is provided in chapter 7.The
next chapter focuses on the Grounded Theory Methodology used in this research to
investigate how patients with HIV/AIDS access their treatment in the Nigerian
setting.

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Chapter 3

Methodology: Using Grounded Theory in an Access

Study
3.0 Introduction
In the previous chapters, the context under which the study occurred was explored.
In this chapter, I focus on the methodological considerations undertaken in this
research. This research on access to ARVs in Nigeria was conducted using a
Grounded Theory methodology. Grounded Theory is a methodology that takes
cognisance of the important role of context. The Grounded Theory methodology
allows innovative theories to be developed instead of fitting new data to pre-existing
theories and hence, not always able to explain complex, contemporary social
phenomena being studied. This chapter is organised in four main sections. In the
first section, an analysis of how the grounded theory was used, a discussion on the
different variants of grounded theory and the challenges of using grounded theory
are undertaken. In the second section, the role of the researcher in the research is
explored. In the third section, the sample setting and sample population are
described as well as the processes of conducting and analysing the interview data.
In the last section, ethical considerations observed during the research are
discussed. During the process of the research, time was allocated for constant
reflection.

3.1 Reflections of a Grounded Theorist

Schn (1983) suggests that there are two forms of reflection in which professional
practitioners should engage in. Firstly, reflection in action where (in my case) the
researcher is constantly thinking about his professional work, taking notes, making
references and positive changes throughout the research process. This approach
was undertaken during the research and enabled me to learn more and apply
lessons learnt which led to tailoring the research to take cognizance of changes in
context. Secondly, he proposes the process of reflection on action where the
researcher reflects on the work done at the end of the research.

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This is with the aim of helping one perform better in future work. As Habermas
(1974) argues, through reflection, the reflective practitioner is set free from the forces
that limit their ability to succeed and become fully powerful. Elliot (1991) suggests
that reflective practice is expedient and provides a foundation for learning while in
action. These suggest that the reflective route is a creative process where we ponder
on how our work had impacted on us and how we in turn and other factors in the
environment have impacted on our work. This is with the aim of learning and being
more productive in our work. As Weisneer and Merizow (1991. pp. 336) suggest, it is
important for the reflective practitioner to give voice to the community that has not
been heard before.
Dewey (1997) and Merizow (1991) argue that as a result of reflection, the reflective
practitioner needs to learn from the experience, leading to a transformation of the
reflective practitioners perspectives and subsequently positive changes to practice.
As Redmond (2006) argues, during reflection, observations and actions are
synthesised with conceptual ideas leading to higher-order practice. Argyris and
Schn (1974) and Redmond (2006) suggest that the reflective practitioner reflects on
former assumptions and theories in the light of his/her new experience and alters
his/her behaviour and perspectives in response to this may lead to a form of double
loop learning.
As Merizow (1991. pp.106) argues, reflection is more than an awareness of self. In
reflection, we need to go back to see if generalisations are based on a
representative sample or our logic is sound or our analysis discriminating. In other
words, the reflective practitioner may reflect -on action- in action with the aim of
enhancing process and meaning of the reflective practice. The reflective practitioner
may continue reflecting on the experience in the light of new experiences even after
the experience has been judged to be over in an open ended manner. However, a
point needs to come when the reflective practitioner learns from the experience,
forgets the details and move forward to the next new experience.
While working as a Medical Doctor in Nigeria in the early 2000s, I felt frustrated
when patients were prescribed ARVs only to find that the drugs were not available.
This was one of the motivating factors to engage in this study. Because the ARVs
are expensive and HIV patients are not seen very frequently in private practice, they
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offer lower returns on investment which are not attractive for private hospitals. This is
also coupled with the poor prognosis of treatment at the time. Personal experience
working in the Nigerian private sector and informal discussions with private medical
practitioners during the course of the study, suggest that private hospitals are very
reluctant to take on patients who are going to die as it provides a negative reflection
of the hospitals effectiveness in managing diseases.
At the time the research project was conceptualised in September 2005, the Nigerian
government had not yet started to actively roll out ARVs. Only about 10,000 adults
were placed on the Nigerian governments ARV access programme. A lot of patients
who could not afford to purchase the ARVs were dying (Oturu 2006,
WHO/UNAIDS/UNICEF 2010). ARV provision was mainly through the government
specialist hospitals. They still bear the major responsibility of providing ARVs in
Nigeria. Due to my previous professional experience, I paid particular attention to
influences on my data. For example, making sure that I was open minded regarding
new issues and reflecting on changes as well as similarities and differences with
previous work. I had to ensure that I kept an open mind to allow new issues and
concerns that the research may bring to emerge.
The research aimed to trace the pathway that the participants followed from pre
testing, testing, starting ARVs and remaining on ARVs. The linkage of HIV with sex,
stigma and the fatal nature of the HIV diagnosis at the time, makes it a sensitive
subject. Some of the participants did not want other family members or work
colleagues to be aware of their diagnosis. Disclosure of their HIV status could lead to
them being discriminated against, ostracized or even losing their employment. In
order to develop professionally as a researcher, I utilised reflective techniques.
Johns (2009) argues that the process of reflection is subjective and singular, under
the judgement of the reflective practitioner (pg. 22). Similarly, Boud et al. (2002)
suggest that only learners can learn themselves and only they can reflect on their
own experiences. They suggest that the learner is in control as s/he reveals what
thoughts or feelings that they choose to disclose. In the same vein, Stimson (2009)
argues that reflective practice cannot be taught, but is an innate capability inherent in
us all. It involves an intuitive sensitivity which the creative unconscious can attain to
infinitely better than the conscious deliberative mind. As Schn (1983) suggests, we
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often learn through non-logical processes which are present in effective practice,
leading to tacit knowing (Pg. 52). Examples of the various research experiences
and how the research was modified in response to these experiences are provided in
section 3.3 of this chapter.
The reflective practice is an active practice that requires some effort to escape from
the swirling action of the research to enter a cocoon of silence where the reflective
experience passes through the researchers mind. This assertion is echoed by
Redmond (2006) and Merizow (1991) who argue that a reflective environment is
needed so that the reflective practitioner creates a separate reality in time and
space. As the researcher engages in this process, there may be what I term
triggered memory points. These are points in the research experience where the
researcher remembers events that evoke feelings in the researcher and causes
him/her to learn from the experience. Although feelings are often regarded as soft
issues that should not cloud the reflective practitioners practice, as Wiessner and
Merizow

(2001. pp. 334) suggest, emotion and intuition are useful tools in the

arsenal of the reflective practitioner which assist in learning.

Boxer (2002) suggests that reflection is both a retrospective practice in which the
reflective practitioner reflects on the past (past reflection) but also a process where
the practitioner uses his past experience as a base to reflect prospectively about the
future (option analysis). The second phase is similar to what Merizow
(1991:107,108) describes as thoughtful action, in which the reflective practitioner
makes judgement as a result of past learning with the aim of changing his or her
practice (Reflective action).
The paradigm that a reflective practitioner chooses may be based on cultural,
philosophical or religious inclinations. Reflective practice has the potential of drawing
the reflective practitioner to spiritual practices to aid the process of reflection. For
example, Johns (2009) suggests that he wears spiritual symbols that represent
peace and tranquillity in his reflective practice. Similarly, as a result of my religiosity,
I may have utilised Christian religious tools subconsciously during the research
process.

80

In this research, my background as a Nigerian from a Christian community and my

training in biomedicine may have influenced the research as discussed in the
following sections.

3.1.1 Role of my religiosity on research

My Christian background may have had an impact on the research which can be
both an advantage and at times a challenge. Johns (2009) argues that reflection is
the process of learning through our everyday experiences towards realising ones
vision of desirable practice as a lived reality. He suggests that the idea of reflection is
spirit and that health care at its core is a spiritual practice. He argues that during the
reflective process, extra cognitive insights and hunches may occur through esoteric
influences rooted in ancient wisdom traditions (xi,8, 95). This may have happened in
this current research though revelations in dreams and during waiting periods of
pondering. As Stimson (2009) argues in his paper published in the Reflective
Practice journal, dreams are a useful tool in the training of the reflective practitioner
in making sense of reality.
For my reflective practice, I utilised the technique of waiting (Isaiah 40:30). Waiting
involves the process of sitting in silence that allows the reflective practitioner the
opportunity to allow the events of the lived experience to run through the mind in an
ostensibly unedited state such that any subconscious analysis contributing to
learning is able to come to the fore. Through waiting and reflecting, the reflective
practitioners perspective and practice is able to be transformed in the light of the
reflective practice (1 Corinthians 13:12, 2 Corinthians 3:18). These times of waiting
were occasionally followed by journaling in which the thoughts were put down on
paper, allowing for proper vision of future self development and practice (Habakkuk
2:2).
As Mills (1959) suggests, keeping of a journal in itself is an intellectual production
through which facts and ideas can grow and be developed. Similarly, Blake (2005)
argues that journaling is an active learning technique that enhances reflective
practice. Ortlipp (2008) also suggests that using reflective journals in qualitative
research encourages critical self-reflection and transparency in research. As
highlighted in section 3.7.6.1 of this thesis, journaling was a useful practice for

81

maintaining my physical/emotional wellbeing. Journaling also helped me cope with

some of the stressful aspects of the research (Pennebaker 1993, Purcel 2006).
For the purpose of this research, religiosity is defined as beliefs and practices of an
individual within the confines of a particular religion. Influence of religious belief is not
uncommon in theoretical based research. For example, Karl Marxs (one of the
founding fathers of sociology) concept of historic materialism in which he argues
that capitalist society was developed as a result of Christian beliefs and practices
may have been influenced by his experience of converting from Judaism to
Christianity and finally to atheism (Traverso 1994). Similarly in a counter argument,
another founding father of sociology (Max Weber) in his seminal work on The
protestant ethic and the spirit of capitalism argues that capitalist development in
Western society was fostered by the protestant work ethic and not developed as a
result of Protestant Christianity (Weber and Swedberg 1999). His thesis may have
been influenced by his mothers Christian religiosity and his membership of the
Evangelical Social Congress (Gerth and Mills 1948, Wolfgang 1984, Wolfgang
1992).
My religiosity may have influenced my motivation and passion to be involved in
research that aims to reduce discrimination of people living with HIV/AIDS and
improve their access to HIV treatment. A Christian Scottish nurse by the name of
Mary Slessor worked as a missionary in Nigeria. In the past, twin babies were killed
in Nigeria or left to die in the bush as they were thought to be evil. Mary Slessor
successfully harnessed her Christian religiosity to help put pressure on traditional
rulers in the Eastern part of Nigeria to banish the killing of twins (Taylor 1996,
Robertson 2008).
My Christian background may have made it easier for me to build rapport with
religious participants and connect with their spirituality. This may have made it easier
for them to open up as they realized that I was sympathetic to their religious beliefs.
As a New Generation Charismatic Christian, I had to be careful not to allow my
theological and doctrinal beliefs deter me from acknowledging the influence of other
religions within the ARV access field. As identified by the participants of this study in
chapter 6, the influences of the Catholic Action Committee on AIDS and the
Redeemed Christian Church of God on ARV access are acknowledged.
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My religiosity may have also made me comfortable discussing religious matters with
participants. Undertaking my medical education in the Northern part of Nigeria
(Usman Dan Fodio University, Sokoto), and being conversant with the Muslim
religion may have made it easier to engage with the Muslim participant who took part
in the study. Nevertheless, as religion can be quite a sensitive issue, it may be
important to propose that the findings of this PhD research, pertain mainly to
Christian religious practices/beliefs and may not be generalized to Islamic or other
traditional religions in Nigeria. The fact that the participants were overwhelmingly
Christian is very likely to be connected to the HIV networks that I have access to
which tended to have more Christian members. This may also be a reflection of the
relatively low prevalence of HIV in mainly Muslim States when compared with mainly
Christian States in Nigeria (NACA 2003). My religiosity may have made me
sensitive to the religious issues within the research field that may have seemed
irrelevant to someone who is irreligious.
On reflection, the research has had an impact on me. Going through the process of
the PhD, I have learnt that I do not necessarily have to solve all problems within the
research field to make an impact. I have also learnt to appreciate my personal
limitations and the possible limitations in any research. For example, this current
research may not be able to provide research based evidence for solving some of
the structural issues identified in this research. Contributing to the debates in one
important aspect (in this research stigma in access to HIV treatment) may be
sufficient in making a positive global health impact. Going through the research
process has also made me confident as a qualitative researcher. I realised that I do
not necessarily have to be an expert in both qualitative and quantitative research
methodologies to make a positive impact in research.
Learning about the quantitative methodologies during the early phase of the
research, enabled me to appreciate epistemological and philosophical underpinnings
of quantitative research in such a manner that provides me with the skills and ability
to understand quantitative research and engage in research discussions with a
quantitative researcher. However, I am still comfortable, pitching my tent as a
qualitative researcher with expertise in Grounded Theory methodology using Nvivo
computer assisted analysis software.

83

During reflection, the reflective practitioner may take cognizance of self and
background and the influence it may have on the research. For example, my
medical background may have influenced the way in which I approached the
research process.

3.1.2 Influence of medical practice/background on research

In terms of medical practice, the research process has enabled me to understand
better the links between the contextual and structural intersections and disease.
Understanding these links can be challenging when working within a biomedical
framework as the framework may be limited in understanding complex social
determinants of disease. This has enabled me to appreciate patients not simply in
terms of signs and symptoms, but also in terms of the structural and contextual
environments in which they find themselves and the impact this has in caring and
managing patients, their families and their diseases.
As Cioffi (1997) argues through reflection, practitioners become more mindful and
increasingly sensitive to their intuitive responses. As I reminisce on the impact of the
research has had on me and conversely of myself on the research, I realise or
suggest that there is a symbiotic relationship in which my perspectives and practice
are changed by the research and the research field is changed by me. As highlighted
in the epistemological section in chapter 3, my epistemological understanding of
health has been modified from a purely objectivist standpoint to one of a
constructionist. Further information on my constructionist epistemological stance and
the influence it has on the research is provided in section 3.4.
My medical background may have influenced my zeal to provide imaginative
solutions to the sociological problems that surround stigma in access to HIV therapy
in Nigeria. However, there may be no easy cures to social ills within the community.
Nevertheless, parts of my medical training may not be disadvantageous but rather
advantageous as I draw upon relevant experience and skills obtained during my
medical practice to bear on the PhD research process.
In other words, when undertaking my current role as a researcher, I have the ability
to draw upon past research, medical and religious experience in such a manner that
may make the current task that I am undertaking richer and enhances my

84

experience. For example, the practice of confidentiality, anonymity and empathy

developed from medical practice were very useful when conducting research
interviews in the field. Further information on the practical impact of my role as a
researcher on the research is provided in section 3.4. Although my initial biomedical
perspective has been challenged to include a sociological understanding of the
determinants of disease, this does necessarily preclude me from drawing on the
lessons or knowledge obtained from engaging in medical practice. My biomedical
skills enabled me to listen to research participants empathically, process the
information being given and write interview notes simultaneously. In the research
field, I also take cognisance of my background of living in Africa and interacting with
people from different tribes and cultures.
Conversely, the research process may also influence any future medical practice or
health care policy exercise that I may engage in. For example, I draw upon research
values in ensuring that medical and surgical management offered to patients are
underpinned by evidence based practice. I may also draw upon my understanding of
the sociological determinants and modifiers of disease to ensure that when engaging
with patients, the social, religious and cultural background of the patient is taken into
consideration in the constructive selection of offers/medical options. The research
will have an impact on my future professional practices.
As Johns (2009) argues, the objective of reflection is to appreciate an experience,
judge how decisions were made, consider the response and reflect on the
consequences of the decision so that one can learn from the experience. Similarly,
Dewey (1997) suggests that during reflection, there is a discernment of the
relationship with practice and outcome of practice. In the next section, I provide a
detailed reflective analysis of the methodological considerations I considered in the
PhD process.
A balance had to be struck on a methodology that would provide answers to the
research question on the one hand and protect the identity and emotional
vulnerability of the research participants on the other hand. Cultural issues such as
religion and stigma were identified to be of key importance in the study. Such issues
are better studied using a qualitative methodology as they are difficult to accurately
quantify. As the research aimed to explore how patients access treatment within their
85

collective milieu, interviewing appeared to be appropriate considering that it provided

a safe base to identify and construct theoretical explanations as to how the patients
accessed ARV treatment along different, historical, social and cultural contexts with
limited risk of social, physical or emotional trauma.
Cassaba et al. (2008) used Grounded Theory analysis to study the experiences of
Hispanics with diabetes and depression accessing the health care system in
California. Chapin and Kewman (2001) also employed Grounded Theory in their
analysis of factors affecting employment following spinal cord injury. Their results
have been widely drawn upon, demonstrating that Grounded Theory can be useful in
answering specific research questions, while exploring the more complex aspects of
the lived experience of health issues. Using Grounded Theory allows the researcher
to place more weight on peoples experiences as people tell their stories and make
meaning from them without the imposition of a framework.

3.2 Using Grounded Theory as a methodology

The choice of research methodology is an important aspect in the research process.
The methodology is the heart of the research as it is the bedrock on which the
collection, analysis and reporting of research results lie. It is the strategy or design
that used particular methods in research for an anticipated outcome (Crotty 1998).
Taking the nature of the research question and the sensitive nature of the research
topic, a qualitative Grounded Theory approach was used for the study.
Grounded theory is an approach in qualitative research where data is collected and
used to generate rather than verify theory about a group of individuals experiencing
a phenomenon (Glaser and Strauss 1967). Theoretical ideas are set aside and
concepts are developed by comparative analysis. In Grounded Theory the data can
be collected through interviews, observations, memos and field notes. They are then
analyzed through a coding procedure to produce concepts that are the building
blocks of the theory (Glaser 1978; Strauss and Corbin 1994; Thomson 2006). It is
important in research to state whether Grounded Theory is being used as a method
of analysis or as a methodology. In this study, Grounded Theory is used as a
methodology with the aim of contributing to theory development.

86

There is a difference in how Glaser interprets the procedures of Grounded Theory

from that of Strauss and Corbin (1998). Glaser (1992) argues that the researcher
should not follow strict guidelines but should be flexible. He argues against extensive
related literature review and accuses Strauss and Corbin (1990) of trying to force
concepts from the data through their prescription of analytical tools. The tools may
be useful in helping those who cannot think analytically, but following them
mechanically can lead to a poor Grounded Theory.
At this point, it is necessary to state that there are different variants of Grounded
Theory. The three main positions appear to be what are termed the Glaserian (also
known as pure, objectivist or classical), the Straussian (developed by Strauss and
Corbin) and the Charmazian (also known as constructionist) Grounded Theory
(Hunter et al. 2005; Bradley 2010).

3.2.1 Glaserian Grounded Theory

Advocates for the Glaserian variant of Grounded Theory suggest that by reading
through the data and memos and by a process of subconscious processing, the
concepts should emerge from the data without using mechanical tools (Holton 2008).
I experienced this during my study. While reading through the transcripts, I took time
out to think about the data. Some of the concepts were developed during these
periods of reflection.
I also made a habit of sleeping with a pen and paper by the side of my bed as some
concepts and ideas emerge in the middle of the night and need to be jotted down as
I may not remember them in the morning. There may be some fear that may be
experienced by novice researchers that nothing important may come out of the data
(Charmaz 2006). However, by being patient and thinking through the data, themes
and concepts will emerge. On reflection I realised that during some of my analysis of
the data, I was using some of the analytical tools espoused by Strauss and Corbin
(1990), albeit without deliberate intent.

3.2.2 Straussian Grounded Theory

Strauss and Corbin (1990) make Grounded Theory analysis more transparent as
they demonstrate detailed steps to follow in Grounded Theory analysis. It is this
procedural approach that made their work popular (Brantz and Charmaz 2007).

87

Before their work, Grounded Theory was a mysterious technique which only students
and apprentices of Glaser and Strauss who could conceptualise could perform.
Strauss and Corbin (1990) provide a clear framework to follow for research students
and those new to qualitative research. This assertion may not necessarily follow as
some adventurous novice researchers may use the Glaserian approach while some
conservative experienced researchers will prefer Strauss and Corbins technique.
Strauss and Corbin (1990) however brought in some controversy in the Grounded
Theory methodology through their introduction of the coding paradigm model in
Grounded Theory analysis. They coined the term axial coding for this kind of
analysis. In axial coding, a coding paradigm model is used that aims to find
relationships between categories and understand the phenomenon to which they
relate (context, intervening conditions, action strategies and consequences are
identified from the data).
As Glaser (1992) argues, the introduction of the coding paradigm early in the
analysis could inhibit useful concepts from emerging from the data. The introduction
of the one size fits all theoretical model appears to be in contravention or
contradiction of the aim of a Grounded Theory. This is to generate theory that arises
from the data without the constriction of a framework.
By introducing the pet or preferred framework early on in the analysis, the data are
viewed through the lens of this framework instead of the lens of the participants.
Instead, Glaser (1978, 1992) and Charmaz (2006) suggest that any theoretical code
that is used in a Grounded Theory has to earn its way. If the coding paradigm can be
shown to be useful in a Grounded Theory, it may be used. However, it has to be
demonstrated to be necessary from the data and not mechanically put into the
analysis. The coding paradigm did not prove to be relevant for this study and hence,
was not used. It might have prevented concepts from emerging had it been used
early on in the analysis. Despite on going polemical discussions in this contested
area, Strauss and Corbin (1998) should be credited for making the process of
Grounded Theory more transparent.

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3.2.3 Charmazian Grounded theory

Charmaz (2006) advocates a constructionist version of Grounded theory. As
Charmaz (2006) argues, the researcher is not detached from the data but is involved
in the construction of knowledge as he or she tries to reflect reality as generated by
the participants. The constructionist version is utilized in this study as it is flexible,
systematic and recognises the role of the researcher in constructing knowledge.
In Charmazs (2006), rendition, a theoretical code may be introduced into the
analysis at the later stage of the analysis (theoretical coding) or the theoretical
framework may emerge inductively from the data following sorting of codes and
memos. This is in contrast to the classic grounded theory where Glaser (1998)
suggests that the researcher is separate from the data. He argues that the theory
derived from the data is not dependent on the researcher but is separate and real.
He suggests that all is data (Glaser 1998). This means that everything in the path of
the researcher (conceptions, literature, philosophical beliefs, conferences and all
other experiences) contribute to the emerging theory. Certain aspects of this
research were constructed in this way, for example the social connection theory (See
Chapter 5).
The constructionist grounded theorist acknowledges that the meaning of the data is
constructed by the interactions of the study participants, the researcher and the
context. While the objectivist grounded theorist views all data and records as
objective, the constructionist grounded theorist, sees both the research participants
actions and recorded data as being constructed.
The objectivist grounded theorist places more emphasis on the data rather than on
the researcher. The researcher is believed to be separate from the data and merely
reflects what the data are saying. Although Strauss and Corbin (1998) contend that
we do not create data but rather theory out of the data, in this research it is assumed
that the data that were created and the meaning/theory generated from the data is
dependent on both the researcher and the participants involved in producing the
data. In other words, a researcher from a different ethnic or professional background
would have produced a different set of data. As a constructionist, the researcher is
not seen as a definer but rather as an interpreter of the scene (Bryant and Charmaz
2007).
89

3.2.4 Grounded theory: Is it aphilosophical?

Glaser is quoted as saying that Grounded Theory is aphilosophical (McCallin,
2008). Glasers aphilosophical stance on Grounded Theory suggests that anyone
can do Grounded Theory irrespective of his/her philosophical position, be it critical
realist, objectivist or social constructionist (Holton, 2008; McCallin, 2008). As social
constructionists like Bryant and Charmaz (2007, pp. 38) propose, the data do not
speak for themselves. The constructionist researcher engages the data in
conversation and works in synergy with the data to develop the theory. However,
engaging in research from a social constructionist position does not necessarily
preclude the theory from emerging from the data. However, there were aspects in
this research that emerged subconsciously. This includes the theoretical stages of
access, discussed in chapter 6.
As Covan (2007), a student and protg of both Glaser and Strauss (1967) argues,
behind the Classic Grounded Theory method is the positivist epistemological
paradigm that suggests that the researcher is objective, separate from the data and
that the data emerges irrespective of the professional or cultural characteristics of
the researcher. Viewing Grounded Theory as a method, places a limitation on the
theoretical development as the researcher is restricted in working along prescribed
dictates within the Classic Grounded Theory method box. However, when
Grounded Theory is viewed as a methodology, it allows the theories to emerge out
of the box.
A broader perspective is utilized in which the potential for theoretical developments
are limitless. Viewing Grounded Theory as a methodology, rather than a method
opens the door for the emergent properties of Grounded Theory to be demonstrated
on the Grounded Theory methodology itself. Hence, it could be argued that different
variants of Grounded Theory may emerge from the core Classic Grounded Theory
methodology. As Bryant and Charmaz (2007, pp. 50) argue, it is critical to reposition
Grounded Theory in the light of current philosophical landscapes in a manner that
enable us to move beyond simple criticisms that label Grounded Theory as being
positivist or limited to micro analysis. Grounded Theory methodology has a number
of techniques and terminologies. An analysis of the different Grounded Theory
techniques is depicted in table 6.
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Table 6 Interpretation of the different Grounded Theory terminologies

Grounded

Theory

Interpretation and how it was utilized in study

Terminology
Coding

This is the process of putting conceptual labels on

incidents in the data during Grounded Theory analysis. I
did these on the Nvivo8 environment. I also printed out
transcripts of data and manually coded them.

Memoing

This is the process of writing down theoretical ideas about

the codes that emerge from the data and the research in
general. I wrote down the theoretical ideas that related to
the different codes as they emerged. It may be expedient
for the novice grounded theorist to have a pen and note
pad under the pillow while sleeping to take note of ideas
that emerge during the night.

Theoretical sampling

This is the type of sampling whereby participants are

recruited that can add more information to the emerging
theory. I recruited participants based on the analysis of
earlier transcripts. The second phase of literature review
was also more focused on gathering data that contributed
to the development of the emerging social connection
theory. As Glaser (1998) argues, All is data. Everything
in the path of the researcher (seminars, newspapers, the
media, interviews, and the literature) are all drawn upon to
develop the emerging theory.

Theoretical saturation

This is the point whereby the addition of new data or

information from the participants of the study does not
bring any new contributions to the development of the
emerging theory. This occurred when new participants
were repeating information that already had been gotten
from past participants

Theoretical sensitivity

The process whereby the researcher increases the skill of

developing theories. As Glaser (1978) suggests, this
comes with experience and reading theoretical works in
other fields. I was involved in reading unrelated theoretical
works such as theology. I also read different books on
how to do Grounded Theory and attended Grounded
Theory workshops.

Sorting

The process of reading through different memos in such a

manner as allows theoretical ideas to emerge. While
sorting through memos and transcripts different concepts
and relationships between codes and concepts emerged.

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3.3 The literature challenge in Grounded Theory

Glaser (1992) argues that the researcher should not engage with the literature
before doing Grounded Theory. However there are arguments on whether it is
possible for a researcher to perform research in a theoretical vacuum (Bryant and
Charmaz 2007). Glaser (1998) suggests that reading the literature before engaging
in a Grounded Theory study could make the researcher biased as s/he may analyse
the data in such a way that they conform to preconceived ideas.
However, he admits that the researcher needs theoretical sensitivity to undertake a
Grounded Theory research (Glaser 1978). Paradoxically, he appears to contradict
himself as he suggests that the way the researcher develops theoretical sensitivity is
by reading the literature (albeit in unrelated fields) (Glaser 1978). Consequently, I
read books in unrelated fields of management, theology, English Literature and
health promotion. It is however, difficult to argue that reading these unrelated
literatures has not affected the research analysis. Backman and Kyngas (1999)
advocate the bracketing technique where the researcher identifies and suspends
what is already known about the experience being studied in order to approach the
data without preconceptions. This technique, which is borrowed from the field of
phenomenology, was utilized in this research.
McGhee et al. (2007) suggest that an initial literature review is important for
increasing awareness of existing knowledge base and to identify gaps in the
literature which the proposed study can fill. It was also necessary to analyze the
literature in order to demonstrate to the Queen Margaret University PhD probationary
and ethics committees that the research is relevant, feasible and that I had a grasp
of the literature surrounding ARVs, access and the Grounded Theory methodology.
Reading through the literature was also necessary to demonstrate why the
Grounded Theory methodology was preferred to other qualitative forms of analysis
such as case study analysis, thematic analysis and interpretative phenomenological
analysis.

92

Consequently, this research is not claimed to be a pure or classical Grounded

Theory. Due to the academic demands of the PhD, the Grounded Theory techniques
had to be supplemented with some Qualitative Data Analysis (QDA) techniques such
as engaging with the literature, transcription of audio recordings and member
checking that might not be considered to be appropriate in pure Grounded Theory.
Member checking involves the process of providing information about the
researchers interpretation and analysis of research participants renditions to the
participant and obtaining feedback that ensures that the researchers interpretation
and analysis are consistent with the information originally provided by the research
participant (May and Pope 2006). Member checking helps to enhance credibility and
validity of research findings (Thomson 2006).
Grounded theory was chosen for this study for the following reasons. Firstly, it is a
rigorous methodology with well documented systematic set of procedures for
analysing data that is verifiable. Secondly, practical Grounded Theory seminars are
available in the United Kingdom conducted by leading experts in the field. Thirdly, it
is an inductive approach that will allow the researcher to tap into the experiences of
PLWHA without the constriction of a framework that may hinder important issues
from emerging. Last but not least, it is context specific and thus addresses issues
unique to particular settings (Bryant and Charmaz 2007).
The use of the Grounded Theory technique however has its limitations. The
descriptive findings derived from the Grounded Theory study are limited to the data
examined which often involves small sample sizes and cannot be generalised (Allan
2003). Theoretical development rather than statistical generalisation is the aim of the
Grounded Theory. The wealth of meaning derived from the rich data is tentative and
could be interpreted in different ways. Hence it is important to recognise the impact
of the researchers background and epistemological approach on the research (Willig
2004).

3.4 Role of the researcher in the research

On reflection, with my medical training, I started my academic career with an
objectivist approach that views reality as objective and detached from the
researcher. This may be necessary for medical management where strict adherence
to quantitative dosages and approaches are essential. With objectivism, reality is
93

believed to exist independently of the consciousness of the researcher and can be

assessed through sensory perception or use of standardised instruments (Crotty
1998). In other words, the object of study is not affected by the researcher (subject)
who undertakes the task of defining reality. However when I undertook the Masters
course in Population and Reproductive Health, I was introduced to other
epistemological approaches.
I came across the constructionist epistemological approach which suggests that
reality is constructed by social actors and is dependent on the social context in which
they exist (Crotty 1998). As Mills (1959) argues, with sociological imagination, there
is a shift from one perspective to another, and in the process, there is a building up
of an adequate view of society and its components. Crotty (1998) argues that
different authors use the terms epistemology and theoretical frameworks
interchangeably. This research uses the framework advocated by Crotty which views
knowledge as instituted at 4 levels as depicted in table 7 below.
The first level in the research design is the epistemological level which investigates
how we know what we know. On one end of the epistemological realm is objectivism
which views the object of study as key and separate from the consciousness. At the
other end of the epistemological spectrum is subjectivism which gives weight to the
conscious interpretation of the subject of the object of study. Constructionism lies in
between the two spectrums and tends to tie both objectivism and subjectivism
together. Constructionism acknowledges the importance of social context in the
construction of meaning along geographical, cultural and historical lines. In this
research, it is not assumed that objective knowledge is located in the field to be
discovered. The assumption rather is that as human beings we are collectively
involved in the creative construction of knowledge.
In the social world, the social, economic and political context is constantly changing.
Information and knowledge obtained 10 years ago may have very little relevance
today if there have been various changes in the social context over time.
Furthermore, social issues that are important in the developed world may be
radically different from what obtains in Africa. This understanding of the contextual
weight of knowledge and meaning were recognised throughout the research study.

94

Table 7 Research framework adapted from Crotty, M. (1998)

Summary

Analysis

(Description)

Title of research

Factors that affect access to anti-retroviral drugs in

resource poor settings

Research

What are the What

questions

social

are

factors cultural factors that links

affecting

affect

access

are

the

between

to socio-cultural

access

to ARVs in Nigeria?

factors

ARVs

in

access to ARVs

Nigeria?
Overarching

the What

and

in Nigeria?

Constructionist

Epistemology
Methodology

Qualitative

Methods

In-depth

Grounded theory
semi-structured Grounded

interviews

Theory

Comparative analysis

Analysis of preliminary and

secondary literature

95

Engaging in this research using a constructionist epistemological approach means

that I was unearthing the meanings of access to ARVS as perceived by the research
participants that were engaging in the process of accessing treatment while taking
cognisance of their interpretations. As Crotty (1998) argues in constructionism, we
do not create meaning out of nothing but rather construct meaning out of the
experiences we pass through in the world. Although the objects of experience in the
world are in themselves meaningless, we engage with them and use them in the
generation of meaning. In this way, theory that is linked with experienced reality is
uncovered.
This is different from subjectivism in which the experiences of the subjects of study
are not tied to the objective phenomenon being studied. In subjectivism the
subjective meanings mirror objective meanings and reflect issues important to
peoples lives. This is uncovered effectively using qualitative methods (Crotty 1998).
In constructionism the relationship between the subjects experiencing the
phenomenon and the objective phenomenon being studied are united and it is this
interaction that is being studied. In other words, as Crotty (1998) suggests,
constructionism holds objectivism and subjectivism together.
Denzin and Lincoln (2000) argue that knowledge is the product of social processes
and that knowledge is the result of the interaction of specific communities of
interpreters within a social context. This denotes the ideas of participant and
researchers being involved in a democratic relationship that leads to construction
and reconstruction of knowledge. However, the constructs of knowledge derived
from the interpretation of contextual experiences need some criteria to justify and
clarify the claims to knowledge as developed in the methodology. In this study the
Grounded Theory criteria of fit, relevance (grab), modifiability and workability were
also applied to the social connection theory (Glaser & Strauss, 1967; Glaser, 1998).
Central to the constructionist epistemological argument is the assumption that the
mind is not passively involved in creating knowledge. It is active in the process of
constructing concepts. We construct concepts and schemes to make sense of
experience and constantly modify these concepts in the light of new experience. This
construction takes place against the background of a socio-cultural context. This
96

contextualisation of knowledge contrasts sharply with the objectivist standpoint,

where results of scientific knowledge are not limited to specific contexts (Charmaz
2000). Care though has to be taken on where the limits of contextualisation lie and
how far they can be taken. Objectivism is not seen as the only way of knowing, but
rather one of the different ways of knowing which could be fallible.
At the second level of knowledge in Crottys (1998) framework, is the theoretical
perspective. This is the philosophical stance informing the methodology and provides
the contexts for the methodological process, logic and criteria. Examples of
theoretical perspectives include feminist or Marxist perspectives. Oakley (2000) in
analysing quantitative and qualitative methodologies from a gendered (feminist)
perspective sees quantitative, objectivist research as being masculine and to have
been developed to put the weight of arguments in numbers and statistics as they
tend to obscure subjective meaning.

Instead, in a macho style, they tend to

manipulate variables to create artificially controlled reality.

The third level of research knowledge is the methodology. This is the strategy, plan
or action or design lying behind the choice of methods of studies. There are different
types of methodological designs that underpin a study. The methodologies are
broadly grouped into qualitative and quantitative methodologies. Generally,
qualitative methodologies tend to link to a constructionist or subjective epistemology
while quantitative methodologies tend to be objectivist.
The fourth element in the framework is the method. The methods are the techniques
or procedures that are used to gather and analyse the data in relation to the
research question. In this research, semi-structured interviews using interview
guides were the primary methods used to collect data. These four elements are used
as the foundations of this research as they provide some structure to the analysis.
In this study the major role played by the researcher in collecting data and
constructing meaning from it is acknowledged. Preliminary discussions with African
HIV positive individuals in Edinburgh, suggested that disclosure of the researchers
medical background may make participants feel comfortable as they believe that
their information will remain confidential.

97

Disclosure of the researchers background may however lead some participants to

want to talk more on medical issues. Also, some respondents may expect a free
medical consultation on symptoms they are experiencing. Efforts were made to
explain that the interview is for research purposes. In order to prevent interviewee
bias, the researchers medical background was not disclosed to the participants
unless they probed about this as it is expedient and ethical to be honest. Only one of
the participants suggested that he guessed that the researcher was a medical
doctor. A tabular representation of my role during the research process is provided in
table 8. This table was developed from the research and highlights different factors
from the researcher that can influence the results of the research`
Having lived for 29 years in different parts of Nigeria, I am used to the socio-cultural
norms of different socio-cultural groups and was able to interact with them
appropriately. An example of a cultural issue in performing interviews is to avoid
handing participants research documents with the left hand as this is construed to be
offensive. This is an issue among the Yoruba and Igbo tribes in southern Nigeria. In
the Hausa tribe, the participant may feel uncomfortable if the researcher continues
making eye contact during the interviews. With participants that are Muslims
(especially from the Northern part of Nigeria), the male researcher is not supposed to
shake the hands of a female participant as it is culturally unacceptable. However,
care has to be taken in asking some of the participants about how they feel. Some of
the Muslim women from the middle belt suggested that it was alright to shake the
hands of the male researcher, but that the man has to make the first move. On the
other hand, the Christian women suggested that they would have been offended if
the male researcher refused to shake their hands. They would have interpreted this
to mean that the researcher did not want to have contact with them because of their
HIV status.
The researcher being a Nigerian may also make the participants feel comfortable. I
can speak the three main local languages in Nigeria and was able to greet the
participants in their local language before starting the interviews. This skill helped
enable the researcher to build rapport with the participants and make them feel more
comfortable.

98

Table 8 A summary of the role of the researcher in current PhD research

Research Issue

Research Consideration

Gender

Some women may feel more comfortable with a female

researcher. Attempts were made to make them more comfortable
by building rapport with female participants in culturally
appropriate ways. This is a difficult terrain for the male
researcher. The researcher was sensitive to gender norms
peculiar to different tribes. For example, care was taken to
determine whether female Muslims were comfortable shaking the
hands of a male researcher.

Quiet personality of the

researcher

This was harnessed during the research as the type of interview

requires the researcher to listen actively and thoughtfully to
issues raised by the participant and probe for further information
based on their responses. The researcher was also observant for
non-verbal cues that may suggest concerns such as anxiety or
boredom and adjusted research accordingly.

Empathy

The researcher attempted to be empathetic to the health plight of

the participants.

Power relations

Participants may feel uncomfortable with an interviewer with a

higher socio-economic status. The researcher also dressed very
simply and smartly so as not to give the impression that I was of
a higher socio economic status from them, but retained respect.

Inter-disciplinary team
coordination

The researcher attempted to be a good team player by having

constant communication between the different research
institutions that contributed in the research.

Use of ambiguous terms in

the research

The researcher asked participants to explain what they mean by

ambiguous terms. The researcher also asked for clarifications
and examples of issues raised by the participants.

Ethical consideration

The researcher was involved in ensuring that ethical standards

are maintained throughout the research process (including
explaining research intentions to research participants as well as
acquiring informed consent.

Data Analysis

The researcher carried out all the transcription and data analysis.

99

3.4.1 Cultural and linguistic competency of the researcher

Some of the participants spoke with Nigerian English. These are literary translations
of sentences from local language. Three of the participants spoke in pidgin English,
while some of the participants switched between pidgin English and normal English.
Coming from Nigeria, being a fluent and expert user of pidgin English was invaluable
in building rapport and gaining confidence of the participants.
Being able to understand slang rooted in history was very important. For example,
when one of the participants was asked whether the ARVs had made a difference in
her health, she answered Ah. it is 7 up. To a non Nigerian, this answer may not
make much sense. This phrase was rooted in a television advert made by a soft
drink company in the 1980s with the slogan 7 up.the difference is clear! This
meant that the ARVs had made a clear difference when she took them.
Notwithstanding the understanding, the researcher still made efforts to ask whether
this was what she meant.

3.4.2 Acquisition of skills needed for the research

While undertaking the Masters course in Population and Reproductive Health, I
received practical training on how to conduct interviews. This is further strengthened
by my experience conducting semi-structured interviews with African HIV infected
asylum seekers in Glasgow, in a Grounded Theory study organised under the
auspices of HIV Scotland, and Paisley University, Scotland. Feedback received from
the organisers and participants suggest that the interviews were well conducted. I
have registered for two training workshops on the practicalities of doing Grounded
Theory and use of Nvivo8 qualitative analysis software at the University of
Manchester and the University of Surrey respectively.

3.4.3 Social connections of the researcher

Another issue that was important in this study was the researchers access to social
gatekeepers. For the purpose of this thesis, the social gatekeepers are influential
individuals that are able to facilitate or impede access to the research participants in
a social context. As a result of the trust they have built with the research participants
over the years, it is easier to recruit the research participants with the cooperation of
100

the social gatekeepers. These contacts proved to be invaluable in the research.

Having worked in the HIV sector in Nigeria for about 10 years, I had interacted with
some of the gatekeepers that helped to recruit the participants of the study. Being
involved in AIDS work in Nigeria and having local contacts provided local advantage
as connections had already been made with key stakeholders who agreed to
participate in the research. Furthermore, coming from the United Kingdom, offered
international advantage as well since the gatekeepers in Nigeria tend to respect and
cooperate with citizens who have travelled abroad for further training (Nigeria First
2005). Without the social connections to the gatekeepers (executive members of a
support group), it would have been very difficult to have effectively recruited and
undertaken the interviews.

3.5 Research stages and setting

The research involved 2 qualitative phases. In the first phase, the literature on
access and ARVs was reviewed. The literature review also included a review of the
different methodologies that could be used in answering the research questions. The
second phase of the research entailed traveling to the field in Nigeria to collect the
data through semi structured interviews. This was through a national support group
that assisted patients living with HIV. The study focused on demand factors that
influenced patients access to treatment. The study also investigated the interaction
of the patient with the different actors and processes within the health care system
as they accessed treatment.
The research instrument used was an interview guide (Appendix 1). The interview
guided interviews were also piloted on the first 6 participants to check for
appropriateness, cultural sensitivity and to see if they helped answered the research
question. When using the guide initially, the interviews appeared artificial and without
much information being obtained. The research approach had to be adapted to allow
more open questions and follow the lead of the participants, rather than trying to
follow the order of questioning as contained in the interview guide. With the later
interviews the answers provided by the participants was used to dictate which
question would be asked next. The information from the first 6 interviews was
however very useful. Consequently, the data from the 6 pilot interviews were also
incorporated in the research analysis. The results of the literature review and the
interviews were triangulated to provide a picture on how patients access treatment.
101

3.5.1 Qualitative-quantitative debate

In order to explore access to ARVs, both quantitative and qualitative methodologies
were considered. There is a thin line dividing quantitative and qualitative research.
While quantitative methodology is useful in confirming hypotheses or theories about
a particular phenomenon, qualitative methodology is valuable for exploring and
developing theories about a phenomenon. Quantitative research deals with
numerical analysis of research data. With quantitative research causal relationships,
predictions and generalisation of findings may be attained (Denzin and Lincoln
1994).
Qualitative research tends to focus on analysis of textual, audio, video and
observatory research data. In any research study, a purely qualitative or quantitative
approach may be claimed to be used. It is also possible to use a mixed approach
where one phase of the study is qualitative and the other is quantitative. However, in
this thesis it is argued that every research has a qualitative and quantitative
component. What is important to state is which component is focused on. In a
quantitative study, qualitative explanation of the rationale and results of the study is
required. Conversely, in qualitative research, it is necessary to state how many
people participated in a study and how many times interviews (for example) were
undertaken. Increasingly quantitative data is becoming an important element for
qualitative research.
There are methodological issues that need to be taken into consideration in
qualitative and quantitative studies. The sampling procedures for quantitative studies
and the sample size are quite different from that of a qualitative study. For example,
while in a randomised control study, a random sample is required, a theoretical
sample is used in Grounded Theory. Quantitative samples tend to need large sample
sizes that are statistically significant while qualitative studies require a lot of time for
detailed analysis of smaller samples.
Issues that need to be thought out in using mixed studies include whether to do the
two studies concurrently or in stages and whether to use the same sample for the
quantitative phase as for the qualitative phase. In deciding which approach to use,
the time frame for the PhD, the feasibility and usefulness of doing both quantitative
and qualitative methodologies, the presence of courses in the United Kingdom to
102

learn current approaches and debates in the type of methodological techniques to be

used and which methodology will best answer the research questions were issues
that were taken into consideration. The financial implications of conducting a large
study are very important and also need to be taken into consideration.
After careful deliberation on these factors, it was decided to focus on a qualitative
methodology for this study. Gaps in the literature that needed to be filled and
appeals for theoretical studies in HIV as espoused by Parker and Aggleton (2003),
Abadia-Barrero and Castro (2006) were also taken into consideration.
Sanker (2006) also argues that qualitative methods are appropriate in investigating
culture specific influences and access to medication. When utilising a qualitative
methodology, new themes and concepts that the researcher is not aware of may be
unearthed through interaction with the participants of the study.
They are able to elaborate and give clarification on their answers without the
constriction of closed ended questions. Socio cultural issues such as stigma, politics
and spiritual beliefs which could be difficult to measure quantitatively can be
explored suitably with a qualitative methodology. A focus on the qualitative
methodology appeared to be appropriate to answer the research question.
The information obtained from this exploratory qualitative study, could provide the
basis or foundation for a larger study that is based on evidence obtained from
patients who have attempted to access ARV treatment or to test the emergent social
connection theory. Glaser (1998) admits that the grounded theorist may not be able
to verify his/her theory within the remit of his/her study but could provide the
groundwork for other researchers to test the theory in different contexts and settings.
Quantitative research is also useful where variables are identified, isolated and
precisely measured. This may not be appropriate for socio-cultural research. For
example it is difficult to measure stigma or culture. It may also not be able to answer
questions that are outside the framework on which it hinges. Although the findings of
a qualitative study could provide 'knowledge' about the phenomenon under study,
this knowledge is brought about by the argumentative power of the researcher as it
is not grounded in mathematical logic (Cryer 2006, Crouch and McKenzie 2006).

103

Grounded theory was chosen as the preferred qualitative methodology as it is

rigorous, iterative and useful in theoretical development. A diagrammatic
representation of the research process is provided in figure 7.
Figure 7 Diagrammatic representation of research adapted from Bovill (2005)
SEPT 2006 DEC
2008

LITERATURE REVIEW
OBTAINING ETHICAL
APPROVAL

ONGOING
REFLECTION
AND RESEARCH ADJUSTMENT

JA1 2008
FEB 2009

INITIAL RESEARCH
DESIGN AND PILOTING

DATA COLLECTION
FROM PLWHA

FEB 2009
AUGUST
2009

TRANSCRIBING
AND DATA
ANALYSIS

ANALYSIS,

JULY 2009May 2012

WRITING

UP

UPDATING

OF

LITERATURE
DISSEMINATION

OF

FINDINGS

104

3.5.2 Project Site

Abuja was chosen as the project site for the following reasons: Firstly, it is a
multicultural territory where different tribes are located. Secondly, it had a high HIV
prevalence rate of 8.9% (NACA 2011). Thirdly, HIV support groups from where
participants were recruited are present. Fourthly, Abuja has health facilities where
patients can access ARVs. Lastly, the researcher had contact with gatekeepers that
agreed to allow access to the participants. Abuja is the capital territory of Nigeria with
68% of the population live in the squatter settlements (Jibril 2006). Squatter
settlements are semi-urban regions within rural areas from where people commute
to work in the city. Therefore, the research may not reflect issues arising from typical
remote rural areas but rather those from semi urban areas.
I was resident at the study site (Abuja) for 6 months (Mid February 2009 to Mid
August 2009). During this time, I visited the HIV support group 1 to 2 times weekly. I
also made informal observations of an ARV site in Abuja. These informal
observations generated useful understandings about how people access ARVs in
Nigeria.

3.5.3 Sampling
Participants were recruited from the membership of a national association of people
living with HIV/AIDS in Nigeria. Theoretical sampling was employed. In theoretical
sampling, participants are recruited purposively initially through telephone and
advertisements on information leaflets. Subsequent participants were recruited who
were able to give more information on categories of themes identified until no new
themes emerged from the interviews (Glaser and Strauss 1967; Strauss and Corbin
1990; Morse 2000).

3.5.4 Target Population

The target population are PLWHA who have experience of trying to access ARVs
from the health care system. Inclusion criteria are: participants should have a
positive HIV Elisa test, they should be not be less than 18 years of age, they should
have attempted successfully or unsuccessfully to access ARVs from the health
facilities, they need to be physically fit to partake in the study, they should also be
psychologically able to communicate and they should be Nigerians. The male to

105

female ratio of HIV prevalence is 1:1, so efforts were made to ensure that there is
equal representation of male and female participants.

3.5.5 Sample characteristics

In this research, attempts were made to ensure that both males and females were
recruited. There is need for ARV access data to be disaggregated to show ratio of
males to females that access ARV therapy as current statistics from UNAIDS, WHO
and the National Action Committee on AIDS do not show this. Often, more women
access ARVs than males (Msellati 2009). This is reflected in the sample recruited for
the study. In total, 21 women and 9 men were recruited for the study. Part of the
reasons why more women were recruited, may hinge on the fact that more women
belonged to HIV support groups than men.
Although most of the participants worked in the urban areas of Abuja, 14 were
resident in rural areas, 12 in semi-urban areas and only 4 lived in urban areas.
Graphic representations of the socio-demographic pattern of the research
participants are provided in figures 8, 9 and 10. Figure 8 highlights the residential
location of the participants. Most of the participants (46%) lived in the rural areas
while 41% of the participants lived in semi-urban areas. They usually travelled from
these areas to the ARV centres to access their medication. Out of the 30
participants, 6 were single, 14 were married, 7 were widowed, while 3 separated
from their marital partners because of HIV infection.
In Grounded Theory, it is difficult to estimate the sample size ahead of time.
Determination of the sample size is important to ensure that there are enough
samples to do a valid analysis with. At the same time, it is important not to take too
large a sample which cannot all be analysed. This will result in waste of resources
and participants time if the data collected from them is not used in the analysis as
the researcher is overwhelmed with the amount of data to be dealt with. The sample
size is determined by theoretical saturation (Crouch and McKenzie 2006). This
usually occurs with a sample of 20 to 30 participants (Creswell 1998; Charmaz 2006;
Stern 2007).

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Using Grounded theory, Corbin (1987) interviewed 20 women in her study on

management of chronic illnesses in pregnancy. In Bovills (2005) PhD thesis on
cross sector policy and practice, 31 participants were interviewed. In Thomsons
(2006) analysis of fifty research articles from various disciplines that used Grounded
Theory from 2002 to 2004, an average sample size of 30 participants was utilized for
the studies. Based on the mean estimates of past published studies and taking
financial and time constraints into account, an estimate of about 30 participants was
considered for recruitment. Theoretical saturation did occur by the time the 30th
participant was interviewed. Theoretical saturation occurred when new interviews
were not giving new information that contributed to the emerging theory. The
theoretical ideas were centred on the fear of stigma and the different types of stigma
that were identified in the study.
Figure 8 Graphic representation of residential location of research participants

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Figure 9 Graphic representation of marital status of participants

Figure 10 Graphic representation of gender of research participants

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3.5.6 Recruitment Procedures

Participants for semi-structured interviews were recruited through the executives of
the association of PLWHA who they are familiar with. This was strategic and
necessary due to the sensitive nature of the disease and the need for confidentiality.
This strategy also took cognisance of the observation that Africans tend to
participate in studies when someone that they know introduces them to the study
(Aneshensel et al. 1989).
These recruitment techniques may have some potential of creating selection bias as
the association executives and participants may select participants that have similar
attitudes. Attempts were made to overcome this by asking recruiters not to only
recruit people who are handy and close to them (such as relatives) or only people
belonging to the association of PLWHA. The snowball technique was also utilised
where identified participants are used to recruit other participants for the study.
The recruiters were encouraged to include occasional contacts rather than only daily
ones, rural as well as urban residents and not to select participants for the purpose
of creating a good impression (Thomas and Quandt 1999). The characteristics (age,
ethnicity, religion, gender, level of education and rural/urban residency) of the
participants were also monitored though out the research process.
During the interviews, the participants were also asked about issues that affect other
patients they know about who may not be members of the association of PLWHA.
For example participants living in the urban areas were asked if they were aware of
different barriers to access of anyone living in the rural areas. They suggested that
access to ARVs was more difficult for those in the rural areas. They also suggested
that stigma was a bigger problem in the rural areas than in the urban areas. More
information on barriers to access is provided in the findings chapters 4, 5 and 6 of
this PhD thesis.
Participants were recruited through the use of telephone and information leaflets.
The information leaflets were also placed at the office of the association of PLWHA
and other civic organisations involved in HIV activities. In telephoning the
participants, recruiters were asked to be courteous and to succinctly disseminate
details of the research project in culturally appropriate ways. The use of telephone to

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recruit participants in combination with information leaflets has been successful in

many research studies (Johnson and Arfken 1992; Spoth and Redmond 1994;
Denton and Smith 2001; Brown 2004).
This also takes into consideration the fact that with 1 mobile phone line to every 18
people, Nigeria has one of the largest total phone densities worldwide (Akwani
2008). The number of people with mobile phones is higher in the urban areas than
rural areas. In the rural areas there are community mobile phones services through
which people can be contacted. Some of the participants, who did not have personal
telephone lines, were contacted through community telephone services. However
this may exclude the very poor who do not have access to telephones. Attempts
were made to overcome this through the use of advertisements on information
leaflets. Most of the participants were recruited through telephoning of members of
the different HIV support groups in Abuja. Only two people were recruited through
the adverts. This may reflect the participants preference of being recruited through
people they know and trust.

3.6 Type of Interview

The semi-structured interview was utilised as the primary method of data collection
as it is easier to organise follow up interviews if issues are raised which need
clarification. Interviews allow respondents to reconstruct events that they have
passed through in their own words. Interviews allow access to a wider variety of
people and situations unlike observations where the research is constrained to a
restricted range of people and localities (Burns 2000). Interviews allow specificity of
focus in answering the research questions. Interviews are also useful in exploring
sensitive issues such as HIV/AIDS where strict confidentiality is essential.
Due to the sensitive nature of HIV/AIDS, PLWHA may not want their private issues
observed. Reactive effects may also occur with observations as people behave
unnaturally when they know they are being observed (Morse 2000; Luders 2004).
However, the researcher observed one of the ARV centres where most of the
participants attended during an informal visit and observed the way the segregation
of HIV patients could lead to organisational stigma. This denotes a situation where
the organisational arrangements in a hospital/organisation inadvertently stigmatises
an HIV patient. More information on this is provided in chapter 5 of this PhD thesis.
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Interviews were preferred for this study as they are less intrusive into peoples lives
and take less of peoples time than observations. It could also be ethically
challenging to justify the observation of patients who may be passing through a
traumatising experience after being diagnosed as HIV positive. During the
interviews, three of the participants stressed that they were partaking in the study
with the understanding that their personal details would remain anonymous. This is
understandable because of the stigma and discrimination that many patients living
with HIV face when they disclose their status.
Semi-structured interviews were undertaken with the participants living with
HIV/AIDS as they provide a way of gathering large amounts of data from questions.
They usually achieve a high response rate. Immediate follow up and clarification is
also possible. Questions can be modified as interviews progress. The interviewing is
flexible adjusting to the emphasis of issues that emerge from the research (Morse
2000).
With the semi-structured interview, an interview guide is referred to, but the
interviewee is allowed a lot of flexibility in replying to questions (Marshall and
Rossman 1999).The researcher also has the opportunity of probing for more
information from respondents. However, there is a risk that some interviewees may
give answers that they think the interviewer wants to hear (Burns 2000).
The interviews also require considerable time for transcription, analysis and
reporting. Each hour of interview took about 10-12 hours to transcribe. These long
hours were due to some background noise and the need to replay recordings that
were not clear. Each transcript took up to 6-10 hours to analyse with later transcripts
taking less time to analyse. The interview guide was developed based on the
research questions and was reviewed in the field site following analysis of the
interviews. The questions were adapted to fit the emerging theory. Early interviews
provided superficial information on the categories that emerged in the social
connection theory. With later interviews, more information was uncovered on the
theoretical categories that emerged.
For example, earlier interviews suggested that self stigma was an issue that PLWHA
faced. After analysing the interviews, the later participants were asked what self
stigma meant to them. They were asked whether they faced self stigma. They were
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asked about how they coped with the self stigma. They were also asked if they knew
other PLWHA who faced self stigma. The interactive process of Grounded Theory
was used whereby the analysis of the early interview transcripts guided the collection
of new data from later participants. The researcher undertook all the interviews and
transcriptions.

3.6.1 How the interviews were conducted

All the interviews with participants took place at the conference room of the
association of PLWHA in Abuja. Times and locations were tailored to fit the
convenience of the participants. In one day, 2 to 3 interviews were conducted. Efforts
were made to build up rapport with the participants. This took socio-economic status,
age, sex and culture into consideration. For example, with younger men the
researcher could discuss football, which is a national sport in Nigeria about which
most young men feel passionate. The participants were encouraged to air their views
without inhibition as there are no wrong answers.
Following the introduction of the researcher and home institution of the researcher,
the voluntary nature of the research was emphasized. The participants were given
information sheets about the research (Appendix 2). Issues pertaining to
confidentiality, the kind of information being sought and the approximate length of
interview were also explained to the participants. Participants were allowed to ask
questions. Permission to record interviews and written consent were sought before
proceeding with the interview (Frey and Oishi 1995). As a sign of their consent, the
participants voluntarily put their initials and signatures on the consent form (Appendix
3). They were then assigned pseudonyms to protect their anonymity.
Two of the participants asked that they did not want to be assigned with codes or
pseudonyms. They were proud of their status and wanted to be known by their real
names. They did not wish to be anonymous. This provided an ethical challenge as to
whether to respect their wishes or to use their real names. They were met half way
by providing similar sounding names to their names. However, because of the fact
that there will be millions of Nigerians with the same names and published literature
will not show any link between names and socio-demographic features of the
participants, it will be practically impossible to identify them by their names.

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Interviews were limited to a maximum of one hour in order to prevent participant

distress. The interview room was well ventilated. The participants had access to
water or refreshments if needed. The structure of the interview was adapted as
necessary if the participants needed to take a break, or postpone all or portions of
the interview. They were given the option of having someone close to them available
after the interview to offer support (Kaanasugh and Ayres 1998; Dickson-Swift et al.
2007). Two of the female participants came with close female friends to support
them during the interviews.
They could also have someone close to them available during the interview although
the presence of someone else could prevent the participant from discussing some
private issues. Two of the participants had family members around for support. The
presence of a third party did not appear to limit the participants propensity to discuss
freely. It appeared that they were more comfortable and were able to speak freely.
They also had the opportunity of having access to trained counsellors after the
interviews if needed (Lee 1993; Brannen 1988). This was not required as the
participants appeared to be comfortable throughout the interview process.
After the interview, they were also involved in some small talk to gradually wean
them off the experiences that they had revealed. Issues discussed about included
local politics, family, sports and future plans for the day. Issues discussed were
tailored to fit the profile of the participants taking culture, gender and age into
consideration. Some of the participants wanted to know if they had given the right
answer. They were persuaded and comforted with the assertion that there was no
right or wrong answer.

3.6.2 Power balance during interviews

Although there are studies that depict the power imbalance that participants may feel
when being interviewed with someone of a higher socio-economic status (Morse
2000), this intimidation was counteracted by building rapport with the participants
and stressing to the participants that the researcher was a student. Traditionally,
Nigerians tend to want to help students as much as possible.
However, there is also respect for Nigerians who have travelled to developed
countries like the United Kingdom and returned. Experience from the research

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suggests that disclosure of the United Kingdom residence status of the researcher
and the sponsorship of Queen Margaret University made the participants take the
interviews seriously and provide as much relevant information as possible.
They were also happy that their views would be disseminated internationally. Most of
the participants suggested that they felt that the research being conducted by a
foreign university will be useful in influencing policy and increasing access to ARVs.
The researcher attempted to build rapport by showing interest in the participants and
having general friendly conversations with them as Hopwood (2006) emphasizes.

3.7 The stages of analysis

3.7.1 Grounded theory analysis: The process of coding

The in-depth interviews were digitally recorded and transcribed for comparative
analysis. The process of transcoding was developed in this research using Nvivo8.
During transcoding, the process of transcribing and coding occur concurrently. Full
transcriptions of all the recordings were performed by the researcher. Each transcript
took initially about 6-10 hours to analyse with open coding. As the analysis
progressed, the analysis became faster lasting about 3-5 hours. The transcripts were
read fully in order to gain familiarisation with the overall story.
Detailed analysis of the data was undertaken through open, selective and theoretical
coding. This is in consonance with Charmazs (2006) and Holtons (2007) suggestion
that there are two procedures of coding in Grounded Theory. These are substantive
coding (which includes the open and selective coding) and theoretical coding.
Practical guidance from the Grounded Theory institute and from workshops in
University of Manchester also steered my analysis.
At this juncture, it is expedient to define the different terms that are being used in
Grounded Theory analysis. Different authors use the different terms interchangeably.
For example codes, categories and concepts are used interchangeably in some
literature. For the purpose of this thesis, coding is the process of labelling chunks of
data with labels that describe and explain social processes. A code is the label
coined from reading through the data. Grounded theorists refer to participants
special terms as in vivo codes. These are codes that arise from phrases provided
by the participants of the study (Charmaz 2006, Holton 2007). For example a
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participant mentioned the term of attitudinal stigma that denotes health care
workers having bad attitudes to patients based on their HIV status. Quotes by
participants on the concept of self stigma as demonstrated in chapter 4.
The terms concept and category are used synonymously as higher level codes that
explains what is happening in a basic social process. A theory is the product of the
Grounded Theory that explains the relationship between different categories derived
from the Grounded Theory analysis.
In the Grounded Theory methodology, constant comparative analysis is employed.
Attempts are made to saturate categories as instances representing the categories
are searched for in the data. The characteristics of the categories are called
properties which are in turn dimensionalised on a continuum (Creswell 1998).The
constant comparing of incidents continues until the process yields no new properties
or dimensions from continued constant comparison. This is when theoretical
saturation occurs (Holton 2007). Along with the coding of data, theoretical ideas that
capture the emergent theory were also being memoed.

3.7.2 Open coding

Themes derived from the analysis are labelled and categorized. Each category is
delineated in terms of properties and dimensions. During open coding, an open mind
was maintained as the researcher analysed the data. Charmaz (2006) coins the term
initial coding for this procedure. Different texts were labelled with relevant codes
(concepts) as depicted by the data.
Strauss and Corbin (2008) provide analytical tools for analysing data. These tools
include the use of questioning. However, as Glaser (1992) argues, using these tools
mechanically could contribute to forcing concepts into the analysis or stifle the
analysis. Notwithstanding some of the tools were used subconsciously in the
analysis. By reading through the data and thinking about what it is saying, different
concepts begin to emerge from the data. The pure grounded theorist coins the term
subconscious processing to describe this process (Holton 2008). As Charmaz also
advocates, questions such as what is this data suggesting? or which theoretical
category does this date indicate? were asked.

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The researcher probed the data to interpret what the participants were saying.
Constant comparisons were also undertaken. Different incidents within the
transcripts were compared with each other. Incidents in later transcripts were also
compared with incidents in earlier ones iteratively. Using these comparisons, the
properties and dimensions of categories were defined. Using comparative analysis,
data are compared with data to find similarities and differences.

3.7.3 Selective coding

A core category was identified and systematically related to other categories. The
core category is the central phenomenon of interest that links all the other categories
(Creswell 1998). Relationships between categories are refined and developed.
Categories are then integrated together. In selective coding, the most significant
codes are used to sift through large amounts of data with the aim of determining as
much information with regards to the properties and dimensions of these codes.
Codes are selected that make the most incisive analytic sense of the data (Charmaz
2006). Codes that could be merged to explain higher level concepts are then
organised into categories. It is not a linear process as reading through later
transcripts, concepts may arise that remind you of issues raised in earlier readings,
making codes glossed over earlier to have more relevance.
Unexpected codes emerge from the data as it is analysed, comparing data with data
and comparing codes with data. As codes are selected, a code is identified that is
central to the analysis and links all the various codes together. This is called the
core category. Some of the codes that emerged early on may be found not to be
significant with later interviews.
For example, one of the important codes that emerged early in the analysis is
projectory stigmatisation or stigma by association. This is the process whereby
relatives, friends or colleagues of an HIV patient are stigmatised because of the
patients HIV status. For example, some customers refused to buy a womans
products because her daughter was HIV positive. In another incident, a pupil was
allowed to sit on a row of chairs alone while other pupils shifted away from him
because his parents were HIV positive. These incidents were not shared by most of
the participants as they did not disclose their status to others. Such codes are

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recognised in this research but are not selected in forming the overarching theory
that explains how patients access ARVs in Nigeria.

3.7.4 Theoretical Coding

When the core category was identified, it was systematically related to other
categories. Relationships between categories are refined and developed. Categories
are then integrated together. A Grounded Theory is arrived at which is derived from
the data. Theoretical codes specify the possible relationships between the different
categories that have been developed from the selective coding (Charmaz 2006). In
other words, they integrate the fractured theoretical story back together again
(Glaser 1978:72). Glaser (1978 1998) offers about 18 different theoretical codes that
can be used to weave the fragmented categories together. However, as Charmaz
(2006) suggests, the theoretical code may be implicit in the data.
The theoretical coding in this research was undertaken based on the relationships
implied by the research data. The memos developed in the analysis were sorted to
put the fractured data back together again and construct a theory. In this case, care
has to be taken to ensure that the theoretical codes utilised in this research, earned
their way into the analysis and were not forced in mechanically (Charmaz 2006).
A typological theoretical code was used to develop the social connection typological
framework. The stages theoretical code was used in explaining the possible stages
that patients pass through to access ARVs. Analysis was aided with the use of
Nvivo8 software which allows easy coding and analysis of data. It can save time in
multiple coding and perform complex searches quickly and efficiently. It also allows
easy transportation and sharing of files and the ability to create models linked to
themes that they represent. Another advantage of Grounded Theory is that analysis
can start as soon as data collecting begins in the first interview. Grounded Theory is
an iterative methodology where data collection, analysis and reporting occur
concurrently. This makes the analysis faster.
To help ensure quality of the research analysis, a variety of procedures were
employed. Firstly, Data collection and analysis were done concurrently so that
interpretation of the data was compared with experiences of participants who are
later recruited. Secondly, developed concepts were cross checked with transcripts to

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ensure that they are grounded in the data. Thirdly, initial readings of transcripts were
conducted independently and interpretations compared with another experienced
researcher in Nigeria. Last but not least, findings were also triangulated with results
of the analysis of contemporary primary and secondary literature. As Mays and Pope
(2006) argue, this will ensure improved validity of the research.

3.7.5 Explorative interaction with 1vivo8

Nvivo8 was used in this Grounded Theory study for a number of reasons. Firstly,
there were other PhD students and staff at Queen Margaret University Edinburgh
that had used earlier versions of the software and had given good feedback on the
software. The software supports classification or categorisation of data which aids in
analysis. Secondly, the latest version had been designed to use much of Microsoft
office features which the researcher was very conversant with. Documents can be
imported in Microsoft word, Plain text or Rich text formats. Different forms of audio
and video files can also be imported into the software. Fourthly, Nvivo8 also doubles
as transcription software. Last but not least, Nvivo8 was chosen because it was
developed especially to aid in Grounded Theory studies (Bazeley and Richards
2000).
Nvivo8 also allows transcription and coding of transcripts to be done concurrently.
When transcribing, if various ideas, themes and concepts emerged from the
transcription, they were immediately coded. Memos were also written on the codes
and other ideas that emerge from the data. Detailed coding of the transcripts was
undertaken. Some ideas could not be worded as codes. Therefore, Nvivo8 was used
to memo those ideas while transcribing. This is one advantage of Nvivo8. Nvivo8
was useful in arranging the transcripts.
Nvivo8 software was used to organise and analyse field notes, memos, project
journals and reflective journals. The software was used in linking data sets to codes
and memos as well as linking relationships between different codes and concepts
that emerged from the data. It was useful in searching the whole data set for key
words. The various data and code reports were printed out and read manually. This
was done so as not to miss some concepts as could occur when reading on the
computer screen.

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The use of Nvivo8 in coding is facilitated by the researcher knowing what kind of
analysis s/he wants to do as the software does not do the analyses per se. It only
aids the researcher in undertaking the analysis. The software did help to keep track
of the process of the analysis. From this software report, the researcher could
highlight times spent doing transcription, coding and memoing. In other words, an
accurate audit trail of the research process was drawn.
Using the iterative process of Grounded Theory, time was spent collecting data,
transferring audio files to Nvivo8 software, transcribing the data, coding, and then
going out to collect more data based on the analysis and repeating the process
again. This iterative process was greatly facilitated by using Nvivo8. Using Nvivo8
made it easy to organise the data. The search functions made it easier to find files
and memos with a click of a mouse.
Glaser (2003) argues against the use of computer assisted qualitative data analysis
software (CAQDAS) such as Nvivo8 as it has the potential of making the analytic
process mechanical. While this is possible, in research using CAQDAS, it is also
possible in research done manually. The main risk in using Nvivo8 could be when
the software is used without any foundational knowledge on the methodology to be
undertaken in the research or when researchers think that the software will do the
theorising for them. It is important to note that the software will only assist the
researcher in the process of analysis. In other words the responsibility of thinking
through the data and generating the theory lies with the researcher and not the
computer programme (Fielding and Lee 1998, Bringer et al. 2004). Using the logic of
Grounded Theory, not all the functions of Nvivo8 were used. Instead, only those that
had specific relevance to the research were selected and used for analysis of the
data.
Doing this research without Nvivo8 could have made the process slower and more
laborious than it needed to be. The decision to use Nvivo8 appears to be an
excellent decision. It was useful in organising large amounts of data in one place. It
is very useful in the classification of data. It also facilitated storing, locating and
retrieving sections of data easily and promptly. It was useful in saving paper. With
the password protection feature on Nvivo8, the data stored was protected from
unauthorised access.
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However, one of the drawbacks with using the software is that as more audio files
and data are added to Nvivo8, the software tends to hang with delays in analysing
data. With more files being added to the programme, the analytic functions of the
software becomes slower. During this period, it made transcription difficult and I had
to supplement my transcription with the use of DSS lite media player software.
Although it is possible to assign multiple codes on a segment of text, it appears
impossible to assign multiple memos on one text with Nvivo8. Each chunk of text
had to be linked to a memo one after the other and could not be done simultaneously
as with the codes. With the software, there is also the risk of spending too much time
organising the data and without allocating time for data analysis. The use of Nvivo8
is advantageous provided that good training is undertaken on how to use the
software.

3.7.6 Ethical considerations

Ethical approval for the research was sought and obtained from Queen Margaret
University Edinburgh before the collection of primary data (Appendix 4). The safety
and well-being of the participants was of importance. The participants comfort was
upheld throughout the study. Informed consent of participants was sought and
obtained before proceeding with research. The signature on the consent form
recorded informed consent.
Clear written and verbal explanations were given to participants on the nature and
possible uses of the research. Information sheets were given out explaining who the
researcher is, why the research is being conducted and what will be done with the
information. Participants were allowed to opt out of the research at any point in the
project if they wished to.
Strict confidentiality was given to all participants. They remain anonymous through
the coding of transcripts. Pseudonyms were used to protect the identity of the
research participants. Transcripts and other records were password protected and
encrypted. The Nvivo8 software is also password protected. Any conflicts of interest
with regards to the research are declared in the acknowledgement section of this
thesis. Any information that may expose the identity of an individual was treated with
great care. For example the socio demographic details of participants were
separated from their real names.
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3.7.6.1 Coping strategies of the researcher

Coping strategies refer to specific efforts to master, tolerate, reduce or minimise
stressful events. Data collection and analysis can be an intense experience
especially if the research topic has to do with a sensitive illness experience or other
stressful human experiences. The information that the researcher obtains in
interviews could be stories of intense suffering or social injustices that could astonish
the researcher (Lee 1993; Morse and Field 1995; Charmaz 2002).
With about 10 years clinical experience and research experience interviewing African
Asylum seekers living with HIV/AIDS in Glasgow, the researcher has been exposed
to emotionally distressing situations. These include seeing patients die and hearing
about distressing stories such as rape and physical assault. With time, it is easier for
the researcher to cope with this and not be emotionally disturbed by upsetting stories
though still empathetic to the respondents plight (Campbell 2002; Dickson-Swift et
al. 2007). Despite this, some coping/support strategies were put in place to guard
against the potential emotional distress of dealing with a sensitive topic.
The activation of peer support networks was employed. A formal arrangement was
made with another experienced researcher in the field who was involved as a
professional confidante in providing me with support to improve my psychological
well-being (Brannen 1988; DicksonSwift et al. 2007).
There were regular debriefing of research activities in such a manner that protected
the confidentiality of the research participants. Debriefing sessions occurred once a
month with the supervisory research team in Queen Margaret University Edinburgh
through secured electronic mail and telephone conversations to provide support,
avoid burn out and prevent me from carrying research stories around with me that
may be harmful to my emotional well-being. I also had access to counselling
services from professional counsellors at the University of Abuja in Nigeria and
Queen Margaret University, Edinburgh, Scotland. On arrival to the United Kingdom a
further debriefing was made with the supervisory team.
I also wrote down feelings and thoughts throughout the research process in an
emotional journal. When strong emotional feelings occurred during the interviews,
these were acknowledged and contained (Craig et al. 2001; Dickson-Swift et al.
2008). In addition, there was scheduling of rest breaks throughout the research
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project. Time was allocated for relaxation, Christian meditation, physical exercise
and leisure activities. I also made full use of my annual leave allowance to rest
(Craig et al. 2001).

3.8 Conclusion
In summary, the Grounded Theory methodology was useful in generating new ideas
about access that were grounded in the data. The balancing act of analysing and
distancing to reflect on the data was useful during the analysis process. Using the
iterative process of Grounded Theory aided with Nvivo8 made the analysis faster
and more productive. Training in the use of both the software and methodology is
essential to produce a good Grounded Theory that fits, is relevant, workable and
modifiable. The social connections theory emerged from the study through
subconscious reflective analysis of the data. More information about the social
connections theory and the stages of access is provided in chapter 5. The iterative
approach of Grounded Theory is flexible and allows the researcher to adapt to the
changing context of the research setting. During the research process, the
researcher was able to reflect and adapt the questions and approaches, based on
the responses of the research participants. This led to more focus on the main
concerns of the participants accessing HIV treatment, which turned out to be stigma.
More information on stigma and a new conceptualisation of stigma is provided in the
next chapter (4).

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Chapter 4

Stigma in access to ARVs in Nigeria

4.0 Introduction: The Discredited attribute of HIV infection and stigma
The previous chapter examined the methodological techniques utilised in this
research. This current chapter examines one of the main findings of the researchthe role of stigma in accessing ARVS among the participants that were interviewed.
This chapter is organised in three sections. The first section starts with a discussion
of developments on stigma, including the seminal works of Goffman (1963) and
other authors on stigma. ARVs are relatively new in resource poor settings such as
Africa. Although access has been improving, there is increasing awareness that
factors such as finances, transportation and quality of health care systems have an
impact on access to ARVs. Although stigma has been written about extensively
since the early days of HIV, there is relatively little written about the impact of stigma
on access to treatment in Nigeria. It is important to recognize that stigma is still an
important factor in resource poor settings.
In the second section, stigma is conceptualised as occurring at different levels in a
typological framework which was developed in this research from the findings. The
framework is used to order research findings. It is argued that stigma and the fear of
stigma are important factors in determining access to ARVs in this research.
The third section of this chapter examines the impact of stigma on health and access
to treatment. Stigma is an important issue that can lead to detrimental outcomes if
not tackled in ARV access programmes. Other researchers in the HIV field have
highlighted the important role of stigma in affecting access to ARV therapy (Monjok
et al. 2010). Using an extensive literature review methodology, Monjok et al. 2010
demonstrate that stigma still remains as a major barrier to the continued accessibility
of ARVs in Nigeria. In the final section, the body of literature that pertains to stigma is
evaluated and contrasted with the stigma findings of this research.

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4.1 Stigma, prejudice and discrimination

Goffman (1963) suggests that for a person to be stigmatised, the person needs to
have a discredited attribute. The stigma is brought about by the discredited attribute
that is socially constructed as being deviant by the mainstream society. He further
differentiates between someone discredited when his attribute is known from a
discreditable person whose attribute is not known. In the case of HIV infection, due
to the long incubation period of the disease, the HIV status of the patient is not
visible until it progresses to AIDS.
Goffman (1963) argues that any discrediting characteristic such as skin colour,
disability or gender could stand as a stigmatised attribute. It is not restricted to
diseases. Phelan et al (2008) however, note that while prejudice studies have
focused on more or less normal people with characteristics different from the
society (such as race or gender), stigma studies have focused on diseases that are
stigma prone such as HIV, leprosy and mental illness (Opala and Boillot 1996,
Phelan et al 2000, Parker and Aggleton 2003).
According to Goffman (1963), stigma is a non desired attribute that links a person to
an undesired stereotype. Stereotypes are preconceived opinions or ideas about a
person with a discredited attribute that are not based on reason or actual experience.
For example, a stereotype may be a belief that all HIV patients are promiscuous
people or drug addicts. Another example could be an opinion that HIV positive
people must be bad people who deserve their illness due to their immoral behaviour.
Other stereotyped beliefs could include believing that most Africans are HIV positive
or that most Muslims are terrorists. George Herbert Mead (1934) an eminent social
psychologist argues that these beliefs are often perpetuated softly and subtly by the
media.
On the other hand, prejudice is an irrational dislike or intolerance of someone with a
discredited attribute that is not based on actual fact. It may be based on distorted
facts. It is often based on stereotyped beliefs. Allport (1958) suggests that prejudice
is a hostile or aversive attitude towards a person belonging to a group (such as
PLWHA, past history of mental illness or ex- convicts). Discrimination is however,
overt. Discrimination is an unjust distinction in treatment of different categories of
people based solely on grounds of possessing a discredited attribute. For example,
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an HIV positive person may be refused a travel visa or job solely because of his/her
HIV status.
The range of stigmatised effects from stereotype to prejudice and discrimination is
fluid and could progress rapidly from one end of the spectrum to the other. One
participant in this research (an HIV positive male) described negative reactions of
health workers at a health care centre as having a form of attitudinal stigmatisation.
This may not be different from the concept of prejudice. The prejudice may be
brought about due to acceptance of stereotypical beliefs. These processes tend to
be silent or inert. Stereotypes, prejudice and discrimination are negative reactions of
society to the person who possesses the discredited attribute.
As Kassam et al. 2009 argue, stereotypes emanate from problems of ignorance,
prejudice from problems of attitudes and discrimination from problems of behaviour.
Tackling ignorance at the individual, community and organisational levels may assist
in the reduction of stigma. The basis for this argument is that stigmatisation is
exacerbated by ignorance and negative attitudes of the society and health care
workers (Alonzo and Reynolds 1995). Similarly, Castro and Farmer (2005) suggest
that the community with knowledge about HIV transmission tends to have lower
levels of stigma. Foucault (1980) also argues that with knowledge, individuals can be
empowered to deal with their challenges. Empowerment of individuals, communities
and institutions through education and enlightenment, may be a first step towards
reduction of stigma.
Stigma is conceptualised as a distinct entity from prejudice and discrimination.
Stigma is brought about by the discredited attribute while prejudice and
discrimination are negative societal reactions to the person with the discredited
attribute. Part of the reasons for ineffective anti-stigma programmes has been the
tendency to use the stigma related concepts interchangeably. This brings about
conceptual confusion and difficulty in providing effective stigma reduction strategies.
Stigma is not always brought about due to prejudice and discrimination. Prejudice
and discrimination are effects of stigma. Indeed, stigma may be unknown to exist in
some situations without the outward manifestation of prejudice or discrimination.
Nonetheless, it is the discredited attribute (in this study the HIV positive status) that
brings about the stigma and not the prejudice or discrimination.
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Furthermore, the social context also plays a role in deciding what is and what is not
stigmatising. Crocker et al. (1998) similarly argue that stigma comes about due to a
devalued social identity. Their renditions highlight the role that social context plays in
determining the nature of the devaluing stigma. What could be a stigmatised label in
one social context may be normal or well sought after in another. In the Western
world being labelled fat is stigmatising, as it is associated with poor eating habits
and poverty. However, being fat in the Nigerian context is linked with being rich and
well fed. As Mead (1934) insinuates, the social aura that is perpetuated in a
stigmatised environment is brought about by complex social interactions between the
self, mind and society. Stigma occurs when a person possesses a discredited
attribute (such as being HIV positive or losing weight). In response to the discredited
attribute the society may react negatively in form of prejudice or discrimination (such
as refusing employment or being violent to persons who are HIV positive).

4.2 A typological conceptualisation of stigma

Stigma was identified as the main concern of the participants in this study. Following
Grounded Theory analysis of the data in this research, a typological framework was
developed. In this framework, stigma is conceptualised as occurring at different
concentric levels, depicted in figure 11 below. These include self stigma, familial
stigma, community stigma and organisational stigma. These are related to the 5
main stages of access identified in the study and discussed in chapter 5. During
each of these stages, the patient may experience one form of stigmatisation or the
other. In the next section, I undertake an analysis of the different types of stigma as
contained in figure 11.

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Figure 11 A Typological Stigma Theoretical Framework

Figure 11 above, shows the typological framework on stigma that has been
developed out of the research findings. With the framework it is argued that different
forms of stigma occur across a typological spectrum. Each type of stigma is unique
and may require different strategies to tackle them. At the individual level, a person
with HIV may experience self stigma. They stigmatise themselves because of the
HIV infection. The person may experience regret for engaging in risky sexual
behaviour.
At another level, a person with HIV may experience familial stigma. This is stigma
that emanates from people that are familiar to the HIV positive person. These may
include family, relatives or friends. Another type of stigma is community stigma. This
is stigma processes that emanate from members of the community. They may be
neighbours or strangers who discriminate against a person with HIV. Organisational
arrangements that inadvertently discriminate against HIV positive people in
institutions such as hospitals, may lead to an inert form of stigma. This is termed
organisational stigma. This is differentiated from institutional stigma where
instructional policies are purposely set out to discriminate against the HIV positive
person. Based on this current study, these stigma processes do not take place in a
contextual vacuum. They are influenced by the wider structural context. These
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include gender, religion/spirituality, politics and the economy. More information on

structural issues that influence stigma and access to ARVs is provided in chapter 6.
In the next section of this thesis, findings and quotes from research participants that
relate to stigma are described and discussed using the stigma framework described
above as a structural foundation.

4.2.1 Self Stigma

The concept of self-stigma was generated by the participants themselves. Some of
the participants of this study were well versed in HIV terminologies. With self stigma,
the HIV positive patient may not experience outward prejudice or discrimination from
the society but internalises the stigma.
Patients with self stigma feel that everyone is aware of their diagnosis and attempt to
isolate themselves. The interviewees describe this stage of self stigma in the
following quotes:
Isolation I can isolate myself because I will begin to look at everyone passing
believes that Im HIV positive or people are discussing about me. Somebody begins
to isolate himself. He begins to dissociate himself from people when they are doing
something (Patricia, 40 year old female teacher).
I was keeping away from people. Staying, isolating myself. Initially, as of the time I
got it, it was when I had the problem that I began to have knowledge about itSo, I
was isolating myself. (Raphael, 45 year old cleaner)
Another participant said that people with self stigma: dont want to relate with those
that are positiveAnd they doesnt want anybody to knowtheir statuswhether
they are positive. And they are dying silently (Sonia, 44 year old petty trader).
When probed about self stigma, a third participant agreed that it was important
saying that: Self-stigma. Yes. It happened to me becausewhy I said it happened to
me, maybe I will be talking to you. That my talk will not be coming out from my mind.
All the thought that is inside my mind is Ah! Its like say this man know say I get HIV
Oh! Its like say, Its like say. You know? That thought will be there. And if I go out,
to God who made me, I will not pass through that same road again. I will make sure I
find another road and pass. That is self-stigmatisation and maybe you yourself, you
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will not know anything. You are just exchanging words with me as friends concerned.
But within me, Im beating myself, Im hitting myself about that. That maybe you have
known about it, but you dont want to voice it out. You understand. So, we call it self
stigma and that is what kills so many PLAs. Because they dont want to come out.
They dont want to talk. They dont want to pass where people are. When they pass,
like when I pass, I will turn my back as whether you are looking me. I will look myself
very well, whether you are looking me. You know? That one, we call it self stigma
because you dont pick the courage from the beginning. You dont know what.you
are thinking maybe the next day, you are not going to see it. You know, when you
close your eyes, you are already in another world. You know? You start thinking all
sorts of negative thoughts which you know is not supposed to be. So, that is how it
is (Shekira, 19 year old student).
Further evidence about the impact of self stigma on the emotional and psychological
well being of people living with HIV/AIDS came from one of the participants (Viktor,
29 year old social worker/HIV activist).
I felt bad. I was disappointed in myself. I felt rejected. I felt self-stigmatised and I
withdrew from the society and my friends. I locked myself in doors for about 3 days. I
wasnt having appetite for food and I was having internal heat. Then I was having
itching. I was having headache. My eyes were red. I think it has to do with trauma
that I went through. You know. So a lot of things happened along the line. So, it was
a really bad experience for me getting to know my status. But I think that I appreciate
it later (Viktor 29 year old social worker/HIV activist).
As Monica, a 37 year old female civil servant on ARVs from the PhD study confirms,
people with self stigma may feel demoralised and feel inferior to other people.
Researcher: What do you mean by self-stigma?
Monica: Thats enacted stigma. When youwhen you yourself, you are
feelingwhen you refuse to come out of it. You are feeling maybe depressed,
disturbed about your status and you feel you are very inferior and you cannot be
compared to human beings. You feel that maybe you are worse than any other
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person. Then you are in trouble. And any other person that looks at you that way,
you wont have the ability, the audacity to fight it back or you explain to that person.
Nobody decides to have it. Its just by chance.
As one of the participants (Celina) suggests, self stigma may contribute in
discouraging patients from accessing HIV treatment as they feel that everyone will
know about their diagnosis. It may also prevent some patients from informing their
spouse about their HIV status.
That one kills some people. They behave mumulocally. I mean their behaviour is
not normal. You stigmatise yourself. You behave like you are afraid. There are many
things that will come inside. Those ones doesnt live long self. Some of them die like
that because they stigmatise themselves. They cant take good care of themselves.
They cant come out fully to make sure thatsome will even forget to take that drug.
They are on ARVs and you dont want your wife to know. The time they give you.
take 6(am) in the morning, 6(pm) in the evening. We always set our time. Then if
you are stigmatising when you wife will sit down with you, or you dont want them to
hear, you will forget that hour. And the minute you forget to take your ARVs, you are
killing yourself. (Celina, 45 year old housewife)
Its killing ohh! If you stigmatise somebody, that one will kill you itself. Because in the
house that you are, you did not inform all your people, you are killing yourself and
others. (Celina, 45 year old housewife).
Similar findings have been found with people diagnosed with mental illnesses
(Kassam et al. 2009). Work done in the United States of America by Lee, Kochman
and Sikkema (2002) also demonstrate that internalised self-stigma prevents people
from accessing HIV prevention and treatment services in China. This self stigma also
leads to low self esteem, isolation and depressive symptoms.
This self-stigma links well with Major and OBriens (2005), identity threat model.
They argue that possessing a stigmatised identity increases exposure to stressful
identity threatening situations. These could lead to low self-esteem, poor academic
achievement and stress. Attempts to hide the stigmatised label could be stressful in
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itself. This self-stigma could be as a result of internalisation of external stigma. Most

of the works on self-stigma appear to have been conducted with mentally ill patients
(Corrigan and Watson 2002). The findings of these researches could be applicable
to HIV stigma as well.
Swim and Thomas (2006) contend in their self-regulatory coping theory, that
experiences of discrimination could threaten self-enhancement goals and coping
mechanisms against perpetuators of discrimination. Similarly, Link et al. (1989) in
their empirical study using mentally ill patients, suggest that as patients enter
treatment, they tend to feel devalued and feel fear in interacting with others. In the
same vein, Corrigan and Watson (2002) argue that self stigma in mentally ill patients
occurs when they internally condemn themselves because of the presence of the
stigmatised label.
Nevertheless, findings from this study suggest that self stigma could also occur in
the absence of any experience of discrimination or prejudice from the society. Some
of the participants described how they isolated themselves because of the selfstigma they were experiencing. This experience occurred with some of the
participants, even though they had not disclosed to any one or experienced
discrimination from the society/health care system. It was the presence of the
discrediting label that brought about the stigma.

4.2.2 Familial Stigma

At the interpersonal level, the patient may experience familial stigma. This type of
stigma manifests as prejudice and/or discrimination levelled on the HIV positive
person by people who are familiar with him/her. They may include family members,
friends, work colleagues or religious leaders/members. A positive HIV result has the
potential to destroy the social fabric of a family. Three of the participants in this study
separated from their spouses because of their HIV status. Shekira, a 19 year old
female student was discriminated against by her own mother.
I remember when I was stigmatised by my own biological mother when she knew
that this is my problem. But it got to a stage where she sat down and said Ive lost
my poultry farm because of Shekira. Ive lost my money in bank account closed
down. You know? She started complainingTo the extent that she sat down with
her colleagues, her friends, you no know that my daughter? You think its a human
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being that is walking? Shes a walking coffin. To the extent that the stigma even
came from my own house. She went, built my house, furnished my house, separated
everything about me there and kept it there (Shekira, 19 year old student).

Familial stigma and post diagnostic violence occurred especially in sero discordant
couples. With sero-discordant couples, one partner is HIV positive while the other is
HIV negative. One of the participants, a 37 year old female social worker, was
beaten to the point of unconsciousness by her husband before they decided to
separate.
When I left my husband, I did not just leave because of the HIV because at a point I
was like a problem to him and every day beating, beating. The last time I left was
because he beat me to coma. I was in coma. So, when I got up, I was looking at
myself as a ghost. I said Ah ah! So its true that if you are dying you will know but
you cant just help yourself. Because, I went blank. When I got up, I was like Am I
still alive? So that day I just decideif I had died it would have been a story. Let me
just stay alive. I discovered that he was tired and he didnt really want to stay with a
positive person. So theres no point forcing myself on him. (Monica, 37 year old
social worker/counsellor on ARVs)
Asha, a 39 year old female petty trader suggested that some men drive away their
wives from their houses when they find out that they are HIV positive.
There are some women that their husband driven them way. They pursue
themthis support group, this month that passed. This month that we are
enteringthe first Saturday of the month, they went to Gbonsa. OK, as you go, a
girl delivered a baby like this. The husband has drivenpursued her. That is how
they sleep outside. See her bodykai! mosquitoes nearly kill her. Kai! (Asha, 39
year old petty trader).
Viktor, a 29 year old male activist was deserted by his friends after he disclosed his
HIV status. He was also deserted by his girlfriend when she discovered that he was
HIV positive while she tested HIV negative.
My friend. I had a childhood friend that we grew up together and we have very good
ambitions. We move together. We do things in commonAnd they all left meSo,
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ignorantly, they stopped coming to my house and when I make attempts to go to

their house, they tell me that they are not available. They are not at home and stuff
like that. So, I felt so bad. I felt stigmatised. I felt rejected. You know? (Viktor, 29
year old social worker/HIV activist)
Martha, a 35 year old teacher on ARVs suggested that her sisters do not allow her to
touch her nephews/nieces because of fear of transmitting HIV to them. Martha
suggested that her siblings wanted her to be sent out of their family house because
of her HIV status. These suggest that unless members of the family are targeted in
programmes, they could actually provide emotional or physical harm to the HIV
patient.
Yes. It was so serious. In fact, I was at the point of death. For me to be alive here is
the mercy of God. And I thank God, every day. Even this minute, Im still thanking my
God because in fact, my family members abandoned me. Even my husband packed
his things and left me. I went home to my father and our father is already late. Only
my mother. They will carry their cups to go and hide. Even to come to my house they
will not want. Even to touch my children, they will not want. So even when they
confirmed, it just kept silent. I refused to tell any of my relations. Even my mother.
Yes so my elder brother said that they should pursue me from the compound. That
I should not stay there. So they pursued me. I was staying at a nearby compound
with an extended family member. (Martha, 35 year old teacher)
Similarly, Philo, a 36 year old unemployed female had the news of her diagnosis
spread to family and relatives by her husband who accused her of bringing HIV to
the home. He later separated from her and drove her out of their family home. This is
demonstrated in the following quote from Philo.
Philo: After the test, I told my husband. I told my Christian brothers and my junior
ones because Im the senior of the family. I went to my sister in law. The senior sister
to my husband and I told her.
Researcher: What was their reaction?
Philo: They were afraid. They were scared. But later.they encouraged me. Only
they advised me to hide it from my old parents because in my village when you have
HIV, that is a death sentence. But later when this thing developed, a meeting was
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summoned and my husband told them that I infected himSo since this thing
developed, my husband separated from me. So its just me and my children and my
parents that are staying.
Celina, also recounts that when one of her sisters disclosed about her HIV status at
a campaign, her siblings disserted her on her return back to her home town.
One of my sister go Kaduna go campaign one day (i.e went to Kaduna to campaign
one day). She told her brothersclose brothers that she is HIV positive. She said
before she come back from Kaduna they no near her again. They started running
from her andits like that (Celina, 45 year old housewife).
Family members and close friends can play a key role in supporting people to
access HIV treatment. However, they can also serve as detractors. For the purpose
of this research, detractors are social actors who distract patients from accessing
ARV therapy through discriminatory behaviour or influencing them to try alternative
remedies. Most of the participants confided in a family member after learning of their
diagnosis. It is paradoxical that although African families are thought to have close
bonds, some families stigmatized family members living with HIV/AIDS.
In the African setting the extended family network is of great importance. For
example, Anne, a single HIV positive woman informed her aunt about her diagnosis
but did not inform members of her nuclear family. This was due to fear of rejection
and disappointment. On the other hand, most of the married couples informed their
partners but did not tell their extended family members or friends. Some single
participants informed their friends about their infection but did not tell any family
member. Some women had to tell their friends when their marriage broke down
because of their diagnosis. These family members could serve as social connectors
by directly assisting them to access the service or providing them with support and
information on how to access treatment.

4.2.3 Community stigma

At another level, the patient may experience community stigma. This is a form of
stigma brought about by members of the community. They may include neighbours,
the media, community groups or society at large. Community stigmatisation occurs
when the community prejudges or discriminates against the HIV positive person. In
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this research, it was found that this could occur in the neighbourhood when
neighbours refuse to buy products of PLWHA.
The Reverend said Eh! And you are living in the same house with her? Why cant
you drive her out? Ok. I will talk to her father. That evening was the Bible study of
the church. So, we went for the Bible study. Everybody was giving me space at the
church because I didnt know what is happening. So, they now called my dad. The
reverend after the service now called my dad. Your daughter is a HIV positive. She
may infect others oh! Just take her. There is a place they normally dump people at
Wuse there. Take her there. When it is the time for her to die, let her die. (Shekira
19 year old female student).
Sonia, one of the female participants similarly suggested that her neighbours refused
to buy her products because of her HIV status.
Wellthat time 2000 from 99 to 2005, welltheir reaction was bad to me because
that time the stigma was high. That time self, I was selling some provisions but due
to the stigma, they stopped coming to my place to buy things. (Sonia, 44 year old
female petty trader)
Another participant called Sarah faced similar verbal insults from members of the
community.
Sarah: Members of the community eh Its a problem because up till now there is
high level of stigma in the community. The compound we are, you cannot let
anybody know. The neighboursyou immediate neighbours. Even if they know, they
will take it and insult you. You are on drugs, you are this, you are that. Every day
insult, but just because I have passed that stage, I dont bother even if you insult me.
Researcher: did you experience any of those things from them?
Sarah: yes, yes, every day, every day insult. (Sarah, 35 year old unemployed
housewife on ARVs)
As for discrimination, Yes They discriminate. Because when you hear how even
this place where I am now working at Nyanya. Because Nephwan clinic is at Nyanya.
Many people, no matter what you tell them, they dont come in there. They will not
even come. No matter what ever you are doing, they will not even come. Unless if
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there is some free gift. Some will come. But some will even ignore. They wont come.
If you are hungry self, some will say bring food. They will not even come in. Up till
this very moment. Im not telling you about yesterday. Even now. Even up till today.
So there is that discrimination and stigmatisation is still very very very very rampant
now in Nigerians (Sabrilla, 60 year old female nurse).
As evidenced from the following quotes, some of the participants refused to disclose
to members of the community for fear of stigmatisation. There was a sense that if
members of the community are informed that they will stigmatise the HIV positive
patient (even if they are on ARVs).
Researcher: You said the stigma is still much in the community?
Raphael: Its still there oh!
Researcher: In what way do they behave?
Raphael: If you tell them, they will keep away from you immediately. Ah! They will
keep away from you. Nobody will like to come near you (Raphael, 45 year old
cleaner on ARVs).
Celina: No we didntwe dontwe are ashamed to tell our neighbours oh!
Because they always stigmatise. If you tell them now, to drink water from the same
cup, you will be stigmatised. So we use to hide ourselvesThey do stigmatise.
(Celina, 45 year old female housewife on ARVs).
Timothy, a 36 year old male driver on ARVs suggested that from personal
experience, people in the rural areas will gossip about someone who is believed to
be HIV positive.
Mmm. Well, when I sick, I go to my village. People around my area, the way they talk
about me, they talk bad. But when my mum know, she see me like Im getting
worried, she quarrelled with me that she is the one that born me (Timothy, 36 year
old driver).

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However, some community stigmatizers end up acquiring HIV infection. As Shekira,

a 19 year old student suggests, some of them become embarrassed when they meet
people they used to stigmatise at ARV centres or support groups where they go to
obtain nutritional support.
She now said Ah! Na my husband oh! Carry the HIV bring house. I looked at her. I
laughed. I said You see. What goes round comes around. You used one finger to
accuse me but the four fingers point back to you. Its the same me that you came to
meet in the same CACA and today where are we? 2 of them now in the compound,
one is down. The other one, they take her to the village. Why? Because she cant
withstand the stigma. (Shekira, 19 year old student)
The findings from this study suggest that high levels of stigma still exist in Nigerian
communities. Similar findings were discovered in a recent qualitative study
conducted in Thailand, where HIV positive women were found to be discriminated
against by the community because of their HIV status (Liamputtong et al 2009). The
results of the study suggest that fear of HIV in the community is still a big problem.
Similar to the findings of this research, the women in the Thailand study and in this
research tend to form community support groups to help them overcome the stigma.
Some of these groups are formed with support from Churches or international donor
agencies.

4.2.3.1 Projectory stigmatisation

Projectory1 stigmatisation or stigma by non association also emerged as a concept in
this study. In this case, the family and friends of a person known to be HIV positive is
stigmatised by the community even though they may be HIV negative. One of the
participants recounted how in one school, his children were segregated from other
children because a rumour went out that he was HIV positive. This type of stigma is
also described by Goffman (1963) as courtesy stigma. It could also occur with the
health care staff. Health and social staff that assist HIV positive patients could also

Projection is borrowed from psychology where it denotes the denial of unacceptable feelings and the
projection of these unacceptable feelings and desires upon others (Martin et al. 2007).

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experience projectory stigma as people feel that they are helping HIV positive
persons because they too are HIV positive.
Do you know that in a class then that was having more than 50 kids in one class,
because my son was already in school, he was given a single long bench alone to
sit. All the others were sharing 6...7 to one bench but my child was given one. And
the second one when my daughter wanted to enter a nursery school, children
were actually enrolling we came with other children and they were enrolling. When
they reached my child they said no, the school is filled up and yet they were asking
the next person whats the name of your child? You see? That was and I use to
remember the time that when a child is passing near my door the mother will just run
and go and grab the child away. Dont enter that house... (John, 48 year old military
officer)
Another participant recounted how people refused to buy her mothers products after
she disclosed her HIV status on national television.
I came out on air to talk about my status. How I was stigmatised. Not somebody
from outside who stigmatised me first. Its my own biological mother who did that.
So, when I went on air, they started calling my mother because she normally plants
Akpu and supplies it. You understand. Madam, we no go buy your akpu again oh!
Your pikin na HIV positive (i.e. Madam, we wont buy your cassava pudding again.
Your child is HIV positive. My mother said She doesnt even stay with me. I dont
use to allow her to do the business. so talk less of her to join her businessto come
and spoil her business. So, with that, the stigma was too much. (Shekira, 19 year
old student)
Stigma in the community can act as a barrier to access. If there is stigma through
association in the community, patients may not want other people to see them
accessing their ARV treatment.

4.2.4 Structural stigmatisation

Structural stigmatisation refers to stigma that occurs within institutional and
organisational structures. For the purpose of this PhD thesis, Institutional
stigmatisation denotes policies and practices within institutions that are openly and
purposely set to discriminate against an HIV positive person and reduce their life
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chances compared with persons who are HIV negative. This is in contrast to
organisational stigma, which occurs inadvertently as a result of organisational
arrangements within institutions.

4.2.4.1 Institutional stigmatisation

This has been noticed in commercial organisations such as banks in Nigeria that
make it mandatory for staff to be tested for HIV/AIDS before they are employed.
Some government scholarship bodies also ask potential applicants to do HIV tests or
mental assessments and exclude people who test positive. This may be due to fear
of the prospective student being too ill to complete the course or concerns about
high cost of treatment to host country. These are institutional forms of stigmatisation
which may further escalate the stigma problem in the society. As Monica, from this
study suggests institutional forms of stigma limits the life chances of persons who
are HIV positive when compared to people who are HIV negative.
The fact that you are positive does not mean that you cannot do anything. I have
seen positive persons are doing better than some negative onesin every aspect of
life. The only area I have problems with HIV isI begin to see that when people
want to go for scholarship, they begin to ask them to come and test for HIV. So does
it mean that if you are infected in this country, they dont give you scholarship again?
So, thats the only area I have problem. Or when you need a job, especially the
banks, no bank employs you when you are infected. There are some institutions that
do that oh. So thats the only issue. If theres an HIV positive person that is very
strong and able, I dont see any reason why they should stop him from going to his
duties or if he needs a job, he should not be given (Monica, 37 year old social
worker/counsellor on ARVs).
Institutional stigmatisation may also occur within the healthcare system. This current
PhD study revealed that patients are occasionally stigmatised by the health care
workers. As Mairi suggests, this may not be in form of a physical discrimination or
rude behaviours such as shouting at the patients.
Eh, at times they dont even allow you to express your feelings. They dont even
allow you to say what you want to say. To voice out your problems. They will just be
shouting at you and at times youll be embarrassed and you wont be able to express

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your feelings to them...and they will not know what you are passing through. (Mairi,
30 year old hair dresser)
Subtle attitudinal stigma may still occur. They could be in the form of physical
gestures, facial expressions or even the tone of voice. During an informal visit to one
of the ARV centres in Abuja, I observed a nurse who was shouting at the patients
with a frown on her face. This kind of attitude will serve as a source of
discouragement to patients. John, a 48 year old military officer on ARVs suggested
that attitudinal stigma in Nigerian hospitals is still a problem.
There are a lot of changes but then the stigma is always there in the hospital. This
stigma has to do with attitude. There are some human beings that feel superior.
Even if you are not HIV positive, there are some people that always feel superior to
other people based on their education or whatever. But the stigma is still in the
hospital. Of course there is stigma (John, 48 year old military office).
The selective application of universal precautions when attending to patients may
also contribute to stigmatisation. Some of the participants complained about nurses
who decide to wear gloves when taking her blood pressure measurement. This is an
unnecessary precaution when there is no risk of blood contact.
Sarah, a 35 year old housewife (on ARVs) from this study, was humiliated when she
was told by nurses that they will need to use hand gloves to take her blood pressure.
Meanwhile, they were taking the blood pressures (BP) of other HIV negative patients
without using hand gloves.
In the initial stage, I noticed some kind of stigma, the nurses and all that kind
ofthose people were pointed out. I reported them to the DG (i.e. Director General).
Later, I dont know how they do with them, they were removed from there. So the
people there now, they are friendly.
Researcher: so you used your political influence to remove them?
Sarah: No, it is very very painful if you see somebody and you start reacting as if
there is a nurse there that will wear three hand gloves, start wearing hand gloves
just to check BP. Wear three hand gloves to check somebodys BP. I have to report
her.
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Phela, a 31 year old business woman also felt bad when nurses refused to touch her
because of her HIV positive status.
Phela: Some of them are friendly and some do stigmatise. So, I cant tell you that all
of them are bad. Some do stigmatiseI can remember last December when I was in
the clinic. There were no rashes on my body by then. One of the nurses that was
taking the(holding her arm)
Researcher: blood pressure?
Phela: Yes. Just told me come in. come in. madam abeg, I cant touch you. I will tell
the doctor that you have rashes. But there is no rashes. I justI entered and met
the doctorBut I felt bad.
Sabrilla, a 60 year old female HIV positive nurse, suggested some health personnel
were not comfortable treating HIV positive patients. They tended to refer them to
dispensaries without obtaining adequate information as to what is wrong with the
patient.
Some of them especiallyIs it Asokoro? They complain a lot that the 2 staff there...
One doctor and anothertwo doctors or sothat they are very discriminatory. They
still discriminate them. Even when they are sick, like when they are having problems
with all these opportunistic infections, they dont treat them. They dont
evenimmediately if they come to the clinic, they will tell them to go to the
dispensary

and

collect

their

drugs

without

asking

them

any

questions.

Withoutnothing. Even if you are sick, they do not admit you (Sabrilla, 60 year old
nurse)
Linda, a 27 year old counsellor complained that she was often treated as if she was
not important and sometimes refused access to the doctor.
Actually, especially that national hospital, it has not been easy because those
people (hiss) the way they treatthe way they treat us in the hospital, sometimes
they treat us like we are just nothing. Sometimes, they will think we are disturbing
them. Sometimes well come. Maybe you are sick, they will not even attend to you.
They will ask you to go for their GOPD. That its not your clinic day. They cannot
attend to you. And maybe you are having a problem at that time. You just want to
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see a doctor. But they will refuse to see you. Sometimes, theyll have to give you
another appointment. They will ask you to go and give you appointment. (Linda, 27
year old female counsellor)
As Mead (1934) suggests, even vocal gestures could manifest as subtle forms of
prejudice. Similarly, Mehrabian and Ferris (1967) demonstrate that the tone, pitch
and volume of voice can all portray internal feelings which could be discriminatory.
These forms of stigma may not be very open but yet powerful in offending and
discouraging the person with HIV/AIDS. Having judgemental attitudes against the
patient is also a form of attitudinal stigma. As Mehrabian and Weisner (1967)
suggest, we get more of our interpretation of social intentions mainly from physical
gestures than verbal words spoken.
Due to the subtle nature of attitudinal stigma, it is difficult to prove (except possibly
through witnesses or an open confession by the stigmatizer). For the purpose of this
thesis, a stigmatizer is a person who discriminates or is prejudiced against someone
who is HIV positive because of the HIV status.

4.2.4.2 Organisational stigmatisation

Organisational stigmatisation emerged as an issue that prevented patients accessing
treatment. Organisational stigma occurs when the organisational arrangements of
the hospital inadvertently stigmatises the HIV positive patient. This occurs, when
they are given a separate special facility which is separate from the mainstream
hospital. Any patient going to the centre is already diagnosed by the community as
being HIV positive.
Celina, a 45 year old housewife, suggests that the segregation of HIV patients in
special HIV wards is discriminatory.
Half are friendly sha. But the health workers some of them are still discriminating.
Because before they touch youespecially if you are admitted. You get one of my
friends that was admitted in Gwgwalada. The way theykai! They nearly kill that girl
but God help her to come out. Some are discriminating up till now, but some are
goodThey will not touch even though they carry that emhand glove wear. They
will not touch you. They willeven the health workers will come create a ward for
HIV people for Gwagwalada. Its very bad. When people are coming asking for
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anybody they will say its that HIV ward. So already they (know that) you that is
positive. It is a very too much discrimination. (Celina, 45 year old housewife).
Monica, another participant from the PhD study, also described seeing friends who
had been admitted in segregated wards.
Researcher: So in the wards, is there any other way they stigmatise people?
Monica: I dont know. One of my friends that had a baby and I went to the ward to
see and she said that anyone that they admit in this ward is positive.
Researcher: Ok. Having a special ward.
Monica: So (laughs). I have never been on admission anyway since I tested and I
thank God.
Researcher: Do you think its a good thing having a special ward?
Monica: It is not. The only thing I think of having a special ward for is tuberculosis
thats in the air and everybody can catch it especially in the hospital. But for an (HIV)
infected person, I dont think its necessary. (Monica, 37 year old social
worker/counsellor on ARVs)
When other patients see someone going to the HIV centre for treatment, they
assume that they are HIV positive. Linda, a 27 year old single mother on ARVs
suggested that at the Abuja National hospital that the HIV patients were initially
treated together with other patients. Later they were segregated to a different part of
the hospital compound. This may be due to the later acquisition of donor funding.
Due to the nature of vertical donor funding, the HIV treatment sections of hospitals
are in a different geographical location from the mainstream hospital. Linda, another
participant in this study, suggests that an integrated health care system may help in
reducing stigma, instead of the current system in hospitals where HIV positive
patients are segregated.
People will be looking at the person and say ah, those people are HIV positive. You
understand. But by the time you bring them together, it will reduce stigma. But in
national hospital, they have their own clinic. Because when I started with them, I
started with them inside the clinic. But later, the clinic was brought out of the hospital
inside one bush. Because, that is what I call that place. Its a bush. Im telling you its
a bush. Because, if you go down there, you will see this bush. You understand. The
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place is not neatSo when you are going there, they know that you are going for
HIV treatment. Yeah. And which is very bad. They should not be different from
others, If really we really want to fight the stigma. (Linda, 37 year old 27 year old
female counsellor).
This also occurs when certain HIV days are set aside for treating HIV patients. This
leads to an inert form of stigmatisation. It is not an intentional form of discrimination.
Nevertheless as demonstrated by the following quotes from interviewees, the impact
of stigma is real in stopping some people from accessing treatment.
I remember specific days are given to see people who are HIV positive in almost all
the hospitals. On that particular date, you find out that most other patients feel
reluctant to go to the hospital because if you go they will just classify everyone as na
dem be this (i.e. On that particular day, most patients are reluctant to go to the
hospital as if they go, they will be classified as one of them). You know these are
HIV people. And in most to the hospitals theapart from the hospital Im now
accessing, if you go to national hospital, they are a complete section you have for
HIV. Even if it is for admission, you have.Its a sort of..a sort of secluded area
for . (HIV people) (John, 48 year old military officer on ARVs)
Though I know there are some organisations that run such clinics precisely just for
HIV and AIDS because I know some in one in my state. So, immediately they see
you even passing through that road, it becomes em, there will beit becomes
questionable. (Beatruce, 44 year old construction worker)
As the quotes from the following participants suggest, having separate facilities for
HIV patients within the mainstream hospital was discriminatory as it gave away the
diagnosis of patients accessing treatment.
Yes. It is. In anyIn any hospital you go, most especially the National too.
Whenever they see us coming from that side, they know that this is positive person.
That is our major problem now. Before it wasnt isolated. But later on, I dont know
why they isolate it. At least, we want them to do something about it. Because the
more they see us, the more they notice. If they are seeing us, they will know that we
are positive but they will not come out and tell you. They see you coming out from
there. Maybe youve been together, closer in your area. But they will not just tell you.
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As far as you are lookingthey are seeing you looking healthy. Looking ok. That is
our problem. In fact, we werent happy sha. And the way they made the centre. Its
not even good. They didnt even build it. They just made it like wood. You know,
something like that. Even the hospital too are also showing some stigma oh! They
are also showing us stigma. (Halima, 37 year old unemployed female).
When you say only HIV people on that day, its just like you are advertising that
every body should come and see that these are the people that are living with HIV
and AIDS. On that day, they should come to the hospital. Because this kind of thing
happened in my state. Somebody on that very day that they use to fix it for clinic,
people will just go there and be saying so these are the people that are living with
HIV? They are the people You see, it creates a lot of stigma (Patricia, 40 year old
female teacher).
One of the participants complained that her diagnosis was given away as she was
made to see a HIV counsellor in the presence of other mothers also attending
antenatal care.
Well, mmm... For me oh as it is, I like it. You understand bah? Because by the time,
they make everything together, you knowwe know that the stigmatisation is not yet
as much asbut peopleeven when we are going for antenatal, when some people
see our folder, that there is a man there There is a guy handing our folder. You
understand? The way they will always discuss. These people that they keep for
antenatal, why is their folder going to this mans (HIV counsellor) hand? You
understand. Sometimes most of them ask the question. (Happiness, 38 year old
business woman).

Other forms of organisational stigma include the labelling of folders as HIV positive.
The participants were not happy that their diagnosis was clearly written in front of
their folders in some hospitals.
Yes. They told all of us that we should do the test. All the people that go for
antenatal you must go for HIV test. So after the test, when they got the result, they
just paste it at the back of or folders. No counselling. No nothing. Even at the back of
my folder, nobody even told me anything. So when I saw at the back, I looked at it.
145

Evidence of HIV positive. I said What? What am I seeing You know. I became so
inquisitive. I said to!(i.e. An exclamation remark) I expected when I go in to see the
nurse, they will tell me this. Nobody says a word. I left. I went back to the antenatal
again. During the next clinic, nobody told me any thing. I said I want to see doctor. I
want to see doctor. Are you sick? Yes. I said I am sick They said what is the
problem? I said I am sick. I want to see doctor. What is the problem? I said OK .I
have cough. They carried my folder and gave me. I went to see a doctor. Reaching
there, I gave him my folder. He said madam can you read? I said yes. I can read.
He said What do you see? I said Evidence of HIV positive. What does that mean?
Am I positive? (giggles) He just looked at me. He said Yes. (Patricia, 40 year old
female trader)
Well. Ive never been to the ward but from the experience I hear from people that go
on admission, its horrible. Theres still stigma in the hospital place. There is...highly.
And as I told one doctor one day, the issue of stigma in the hospitals is like
corruption in Nigeria which we have to pray that God will just help us. We have to
stay away from stigmato an extent people willI can remember there was a day
they had to take my sons blood to the lab and on the form they now wrote HIV
Positive. I had to go and meet the doctor. The next day they changed it to AIDS. I
said Ah ah! Whats the difference? Must you indicate on that form that that person is
infected, before other tests will be run? Or I dont think if there is anything that will
make me want to see. Because its the normal Hb that they want to do. They are
now writing HIV positive. When I insisted, the third one they now wrote RVD or
whatever? (Monica, 37 year old social worker/counsellor on ARVs).
The unnecessary segregation of HIV patients from other patients may also contribute
to stigmatisation. As the following quotes from interviewees suggest, the ARV clinics
in Abuja are often congested with 200 to 250 patients seeing about 3 doctors per
day. This kind of environment may foster a form of institutional stigmatisation.
Well, me I have never experienced this anyway because where we are up at
national hospital, I look at that place. Its too small. Then they now build another
place. But I dont know the reason why they build it. Because since that place, we
are many. Almost 200 people, 250 will come to clinic in one day and the place is too
small. And for pregnant people, I dont know whether its because they are pregnant
146

that they treat them that way. I dont know. I cant just say. (Happiness, 38 year old
business woman)
Thats stigmatising. Its stigmatising. Its not good to separate the service or sector
from every other section of the clinic. What we are advocating for is to have an
integrated em, prevention, care, support and treatment service, where you can go to
a clinic at a point and you can access your TB treatment, HIV treatment, malaria
treatment. You know? Within the same system. You know? And different units within
the same system that will provide a comprehensive service. Without you necessarily
going to a separate, you know? I think we are very far from that in Nigeria. So many
clinic in Nigeria have a separate ward, a separate clinic and I think it is very bad.
(Viktor, 29 year old HIV activist/social worker).
Phela, one of the participants in this study suggested that the place where HIV
patients were being seen was uncomfortable. An informal observation of the facility
revealed that the place was stuffy and without electricity at the time of observation.
But to me its not good. But whereby I dont have any power to ask them what to do
or what not to do.but to me personally, its not good. Because in that our clinic,
when you are just heading towards that area, they know where you are going to. So
at least that one is a stigma. And if you go to the hospital environment, our building is
different. Its a container. Its a container because its not built by block. (Phela, 31
year old business woman).
The findings of this research corroborate preliminary discussions with a key
stakeholder. He suggested that some patients may prefer to travel to health care
centres that are far from where they live in order to ensure that the nearby
community members do not know that they are HIV positive. This may be due to
potential impact of stigma as mentioned earlier. Informal discussions with health
personnel that have worked in other African countries suggest that this practice is
common in other African setting (such as Uganda and Malawi). In the next section,
the functions of stigma in society are discussed.

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4.2.4.3 Functions of stigma

On reflection, it could be argued that stigma may serve some functions. Drawing on
Katzs (1960) functional theory of attitudes, Hosseindzadeh and Hossain (2011)
argue that understanding the functions played by attitudes underpinning HIV stigma
may be the first step in developing effective stigma reduction strategies. At the
individual level, self stigma may have a protective function of shielding the HIV
positive person from the shame of disclosure to others. Barford (2007) argues that
individuals with self stigma often shield themselves by isolating themselves and
refusing to disclose their stigma attributes to others who can potentially discriminate
against them. Golin et al. (2002) argue from their qualitative study in North Carolina,
that HIV positive patients hide their diagnosis from friends and family and take their
ARVs secretly due to fear of stigma.
As Crocker and Major (1989) demonstrate, persons with stigmatized attributes often
draw strength from joining in groups to protect themselves against out groups that
may discriminate against them and improve their self-esteem. Cultural theory
considers how groups in social settings view the world (Howard 2009). Using a
group grid analysis matrix, Douglas (1992 pp.176-178, 2006) suggests that people in
society tend to belong to one of four cultural groups. These are isolates
(characterised by isolated individuals who have been ostracised by society),
individualist groups (characterised by individualism such as markets), position
hierarchical groups (characterised by institutionalisation and bureaucracy) and sects
or enclave groups (characterised by bonding of insiders against outsiders such as in
the case of HIV support groups in this PhD study).
Using group-grid culture theory, Douglas (1992 pp. 145, 2006) suggests that
individuals who are ostracised by society may belong to isolate groups that have no
group affiliation or cross communication and are politically mute (such as isolated
HIV positive persons in this PhD study). She suggests that individuals in isolate
groups need to band together and form a unified group of their own to be politically
relevant (Douglas 2006. pp 145). Applying Douglass (2006) group-grid analysis to
this study, it appears that patients living with HIV/AIDS migrate from isolate groups
to form sect groups. These sect groups may become organised and evolve to
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position hierarchical groups with some degree of bureaucracy (such as the National
Network of People living with HIV/AIDS who have executive members, constitutions
and a bureaucratic structure). These support groups protect the concerns of insider
members who belong to their groups from threats by outsiders.
Formation of HIV support groups may serve as a self protecting function. In another
study from the Pacific North West of the USA, it was found that older adults living
with HIV/AIDS often went into a phase of protective silence during which time they
are silent about their diagnosis for fear of discrimination (Emlet 2007). As Yebei et al.
(2008) demonstrate from their Kenyan sample, how HIV positive persons utilize self
stigma as a coping mechanism may vary depending on gender and social context.
Drawing on Kurzban and Learys (2001) evolutionary theory of stigma analyzed in
section 1.5.2.2, it may be argued that at the familial, community, organisational and
institutional levels, the discrimination of people living with HIV/AIDS may be
premised on fear of infection. Even though scientific evidence suggests that
HIV/AIDS can only be transmitted through intimate contact, the fear of potentially
acquiring an incurable disease may underpin the societal reactions at these levels.
Community members who refuse to buy food stuff from HIV positive persons may
erroneously believe that HIV can be transmitted through food or inanimate objects.
As Maman et al. (2009) demonstrate from their analysis of community stigma in 4
sub-Saharan and 1 Asian country, the community often discriminates out of fear, to
protect themselves from HIV transmission, suffering, death and the burden of caring
for someone living with HIV/AIDS. Similarly, as Nyblade et al. (2009) demonstrate,
institutional and organization stigma in hospitals may occur among health care
workers as a protective function due to fear of infection from casual contact. They
propose that this may stem from incomplete knowledge about HIV transmission. As
Andrewin and Chien (2008) suggest from their survey research in Belize, health care
workers often discriminate against HIV patients by disclosing HIV status to other
colleagues in a bid to protect themselves from HIV infection. Clearly labeling files as
HIV positive as practiced in some hospitals in Nigeria may be done to reduce the risk
of health care workers being infected by HIV/AIDS.

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Similarly, the refusal of some scholarship boards to sponsor someone who discloses
his/her HIV status, may be predicated on fear of expensive HIV therapy that they
may need to statutorily pay for or fear that the HIV positive person may be too ill to
finish the course. Similar fears may exist among institutions such as banks that
refuse to employ HIV positive persons. They may fear that the new HIV positive
recruit will need to constantly take sick time off due to illness or to collect ARVs from
the ARV centers. These fears may be exacerbated in banks where the
organizational culture allows sexual relations between management staff and new
recruits.
In summary, Herek and Capitanio (1998) suggest that HIV stigma has two main
functions. These are expressive functions (negative societal reactions as a result of
social metaphorical connotations of the disease, such as symbolization of
promiscuity or homosexuality) and evaluative functions (due to the psychological
need for protection against a potentially fatal disease). To help structure possible
strategies for managing stigma, the typological stigma framework developed in this
current PhD research is utilized in chapter 7. Within the framework, it is suggested
that since different types of stigma are underpinned by different functions, each type
will need a different strategy.
The typological stigma framework suggests that stigma is social interactionist and at
the same time structural. It is the individuals that make up the social environment
that cooperate to form structures that can facilitate or reduce stigma. Separating the
various components of stigma as done in the stigma typological framework, makes it
easier to manage as different strategies can be developed to tackle each level of
stigma.

4.2.5 The Fear of stigma: the main concern

The findings presented here suggest that the fear of stigma and other obstacles to
accessing ARVs are dealt with mainly through different types of disclosure/nondisclosure to social connectors that enable them to overcome access obstacles. The
fear of being exposed to the community following awareness of the diagnosis may
stop people from accessing ARVs. It is the fear of dying of HIV and the fear of HIV
stigmatisation that may actually exacerbate the effects of HIV infection. This fear of
being seen while attending the clinic was expressed as follows:
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I said ok, Im coming. But that fearbecause if a Nigerian is seeing you, because
there is a sign board. Though not very, but just like these block of flats. In that place,
they just wrote emIve forgotten whatnot actually HIV. But they wrote something.
Ive forgotten what they wrote. Even when I go there, when I reach and Im about to
reach the lift, to get to the place, I will be thinking if I come down from the lift and
somebody will see me. What will I do. I will go up again and then I will go down
(Sabrilla, 60 year old HIV positive nurse on ARVs).
Yes. Some dey fear. Some dey fear. like some people (giggle). Even to go to the
hospital, them dey fear. Because if they reach there maybe them go jam who them
know for the place they are collecting ARVs (i.e. because if they reach there, they
may meet someone they know as they are collecting the ARVs). Then the person will
know that they are HIV positive then they will start talking and running away from the
person. So some use to fear. Even though they know they will just sit down like that.
They will not do anything about it. (Marcella, 32 year old petty trader)
The fear of stigmatisation may cause the patients to have stress, isolate themselves,
lose appetite and not feed well. This exacerbates the whole disease process. It is
fear that stops people from accessing treatment. The fear of seeing a friend or
relative at the health care centre who then knows of their diagnosis is very great.
So many people are afraid of stigmatisation and they dont want to see their family
members and they dont want their friends to know that they are accessing such a
treatment. (Viktor, 29 year old HIV activist on ARVs)
The fear of people finding out and spreading rumours with the consequent
stigmatisation is very real. The fear of other people knowing is what makes patients
try other alternative therapy such as herbs. The herbal practitioner usually engages
the patient in psychological therapy. The herbal practitioner takes cognisance of the
patients belief in God and the belief in the spiritual aetiology of HIV. This is in
contrast to the local ARV centre where confidentiality is destroyed by the mass
treatment of HIV patients in a secluded area (Oturu 2011). As can be seen in the
following quote, this can lead to a breach of confidentiality.

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So, when em this girl, Ive known her for some time. She lost her husband. Weve
been in committees. Other committees in the church But, one day she was so
surprised that I met her at the hospital and she was about to access her drugs when
I came in... the moment you see someone in that clinic, you know thats what they
have come for (Beatruce, 44 year old construction worker)
Due to the large number of patients being seen at the ARV centres, the health care
workers do not have enough time to spend with patients. The physician often does
not have the luxury of time to discuss social matters. The discussion is often
technical and focusing on laboratory tests and patients symptoms. Patients are seen
quickly and in some cases, mechanically.
Part of the strategy that the patients use to cope with the fear of stigma is disclosure
to persons who can support them in accessing the ARVs. However, with each
disclosure, there is a risk of hostile reactions from the society in terms of prejudice
and/or discrimination. The findings of this research are similar to the work done by
Lieber et al., (2006) in China. Using semi structured interview analysis, they
demonstrate that fears of stigma pose a major barrier to HIV treatment in China. As
Keusch et al. (2006) argues, delay in receiving treatment as a result of stigma fears,
increases the cost of the epidemic as the disease continues to spread. Hence, the
public health impact of stigma is enormous and far reaching.
4.3 ARVs and stigma reduction
Findings from this study suggest that a form of stigma reduction termed nonassociative stigma reduction might contribute to decrease of stigma in the
community. This is reduction of HIV related stigma in the HIV positive person who is
on ARVs. However, the stigma reduction is due to non association with HIV. As a
result of the fact that the person on ARVs looks healthy, s/he is not associated with
HIV and so is not stigmatised. However, if the community knows that s/he is HIV
positive and is on ARVs, they may still stigmatise. As the interviewees suggested,
neighbours that ran away from them started coming back to them when they started
responding to ARV therapy.

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Ah, in the area which I am now, when I newly tested we were in Gwagwalada then.
Most of them were just running away from me and they showed me
ehdiscrimination. But now most of them are even coming back to me because they
see that I am not what they thought I will be and they saw that I am even growing
fatter. So they say Ah this girl is it true that they say she has this thing and most of
them are coming back again. (Mairi, 30 year old hair dresser)
Other participants in the study suggested that people often refuse to believe that
they are HIV positive when they disclose as they look healthy. This is demonstrated
in the following quotes by interviewees:
And some of them are saying (giggles) that Im lying because I need money. That is
why I stand up to say that kind of thing. That my husband died, thats 8 years ago
and Im still telling them that Im HIV positive. Has it been Im HIV positive, I would
have died since. So, they didnt believe. So, its left for us to let them know that what
we are saying is real. You understand? So, (giggles) (Happiness, 38 year old
business woman)
In a large participant study across five African countries (Lesotho, Malawi, South
Africa, Swaziland and Tanzania), findings by Makoae et al., (2009) showed that to
the contrary, there were increased levels of stigmatisation amongst PLWHA who
were on ARVs compared with low levels of stigmatisation amongst comparable
sample of those who were not on ARVs.
However, they did not provide information as to whether the two groups had similar
physical attributes. Individuals on ARVS with physical attributes of AIDS may
experience greater stigma than those with early HIV infection and no physical
attributes of AIDS (such as weight loss). In their sample of 1,454 PLWHA, those on
ARVS had a mean CD4 count of 273 while those who were not on ARVS had a
mean CD4 count of 418. This suggests that those who were not on ARVs had early
HIV infection and may not have been eligible for ARV therapy. These findings
suggest that simply providing ARVs will not prevent or reduce stigma unless done
strategically. In contrast, as discussed earlier in this section, access to ARVs did
assist in reduction of stigma in the PhD study sample in some cases. This was
through non-association with HIV as a result of the effectiveness of the ARVs. The

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organisational arrangements need to protect the confidentiality of the patients illness

in a culturally sensitive manner.

4.3.1 Effects of stigma and the power of institutions

Link and Phelan (2006) argue that stigma reduces the individuals life chances and
self-esteem. They argue that stigma leads to discrimination, reduced social
networks, reduced quality of life, unemployment, and loss of income, loss of
productive citizens, stress and even death. Stigma also leads to violence in some
African Settings (UNAIDS 2002). This was also found in this current study where an
HIV positive mother was beaten to the point of unconsciousness by her husband
following her diagnosis.
Stigma associated with HIV/AIDS is one of the important barriers to HIV treatment as
infected persons feel ashamed to seek treatment (Brown et al. 2003; Krain and
Fitzgerald 2005). These findings suggest that stigma could lead to delay in seeking
treatment, forgoing of treatment or lead to non compliance of treatment. HIV related
stigma in Nigeria is responsible for patients disappearing from the radar of ARV
centres. They may meet someone they know at the ARV centre and not want to
return.
Parker and Aggletons (2003) concept of power differentials is useful when
investigating discrimination between stronger social groups and weaker ones. They
suggest that stigma comes about when people with social power use this power to
victimise those without power. However, it does not tell the whole story. For
example, someone of similar social status may discriminate against another person
of the same social status. One of the participants (Shekira, a 19 year old female
student) of the study, who is HIV positive, described how she was discriminated
against by another HIV positive person in her neighbourhood because of her HIV
status. She later learnt that the neighbour was also HIV positive, when she saw her
coming to receive nutritional support from the government.
This form of intragroup stigmatisation may not only relate to stigma. Infante et al.
(2009) demonstrate that in Mexico, having a social identity (dark skin) of a Honduran
or Salvadoran exacerbates stigma through increased linkage with HIV/AIDS. They
argue further that linkage of HIV/AIDS to particular races (Haitians), women and
homosexual orientation further assists in the escalation of stigma. Similarly, OBrien
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and Khan (1996), using Irish and Asian case studies demonstrate that being of a
stigmatised minority group coupled with being HIV positive, further assists in
fostering stigmatisation. Prejudice may be aggravated by institutional support.
Institutional sanctioning validates the racist stigmatisation.
As they suggest, institutional racism does not occur in a social vacuum. It is
individuals who make up the institutions that formulate the discriminatory policies.
While the societal reactions to a discredited attribute can play a role in bringing about
stigmatisation, this is worsened by institutional sanctioning of these reactions.
As OBrien and Khan (1996) suggest, when it comes to disease related stigma, the
sympathy and empathy for those stigmatised has also been lacking. In contrast,
there have been laws to punish PLWHA. In the UK, Australia, Benin, Togo and
Guinea for example, laws have been passed to ensure that people who spread HIV
after knowledge of their HIV status can be criminalised and sent to prison (UKSection 20 of offences Against the Person Act 1861, Avert 2010). This may further
foster stigmatisation and may prevent people from accessing HIV testing. Legislation
is needed globally that goes further than discrimination to cover prejudice as well. It
may be impractical to enforce a law against stereotypes but efforts can be made to
create awareness about what these are and how they can be tackled.
In order to tackle the problem of stigma, it is important to have an accurate
conceptualisation. A good conceptual framework could serve as a foundation for an
effective programme to tackle stigma. Keusch et al., (2006) suggest that the absence
of an effective conceptual framework to serve as an evidence base for stigma
reduction strategies is a major limiting factor in the fight against stigma. Jewkes
(2006) similarly argues that current stigma reduction strategies are not working. She
suggests that the current trend of trying to lump internal and external stigma
conceptually, makes stigma reduction strategies to be complicated and difficult. She
suggests that a more nuanced approach that differentiates self stigma and external
stigma is needed. In this research, the development of the typological stigma
framework in which stigma is delineated across different interrelated concentric
levels is a key contribution to the field.

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4.4 Conclusion
Earlier literature on stigma has conceptualized the process of stigma, reactions of
society to stigma and the multifaceted nature of stigma. In this current research
stigma is conceptualized as occurring at different levels. This has implications for
policy. Different strategies to tackle stigma have focused on the individual level or at
the institutional level. The typological stigma framework developed in this research
suggests that stigma occurs at individual, familial, community, organizational,
national and international levels. The findings of this study suggest that despite
considerable efforts, HIV stigma still persists in Nigeria. HIV stigma occurs in
families, communities and even in the health care system. I suggest that stigma
research needs to go beyond the traditional individual units of analysis to cover
macro-level units. Instead of focusing on one level against the other, the framework
developed in this research attempts to link both the micro and macro levels.
Although access to ARVs in Nigeria has improved, fear of stigma and stigma still
stand as major barriers. With the current global financial crisis and concerns about
the long term sustainability of donor funding, it is important for programmes to
recognize these challenges and develop effective strategies that tackle these
barriers when ARV programmes are rolled out (Global Health Policy 2011). If stigma
can be tackled in ARV access programmes, a major barrier will be removed.
Strategies that address stigma in institutional and organisational levels will also help
to protect confidentiality and allay fears of patients who do not want other people to
know about their HIV diagnosis.

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Chapter 5

The Social connection theory

5.0 Introduction
In the last chapter, it was argued that stigma is one of the theoretical strands that
emerged from the data. In this chapter, another theoretical strand is developed which
emerged from the data collected on social connections and the role they play in
accessing ARVs.
The first section of this chapter will discuss the ideas and literature on social capital
in general and on issues relating to the disclosure of HIV status to trusted social
connectors in particular. In the second section, the disclosure strategies utilised by
the research participants are described. The third section of the chapter includes a
detailed discussion of the different types of social connectors and social connection
tools identified in this research. Finally, a model of the different stages of access
developed from the research data is presented.
In the context of this study, social connectors are social actors who are able to
connect HIV positive patients to settings where they can access ARV therapy. This
support may be through the provision of information, encouragement, and
counselling, informal connections or more specific tools such as giving notes or
letters. These social connections occur within a socio-cultural context that plays a
major role in shaping the response. I suggest that the patient passes through some
phases, with each successive phase building on the former till the final stage of
continuous access is achieved.

5.1 Social connections and Social Capital

Social capital is a term coined by Putnam (1995) that refers to the features of social
life such as networks, norms and social trust that facilitate coordination and
cooperation for mutual benefit. Social capital is not a theory in itself. It is a social
resource that can be used to improve health. Appearing to have neo-Marxist
motivations, Bourdieu (1986) attempts to show the link between social capital and
access to resources as he suggests that social capital may be a determining factor
that produces unequal power relations. One of the critiques of social capital is that it
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could mean different things to different people. For example, Kawachi et al (1997)
suggest that it encompasses features of social organization such as civic
participation and trust in others that facilitate cooperation for mutual benefit. In
contrast, Woolcock (2001) places emphasis on the web of cooperative networks that
facilitate collective action to common problems.
As Harper (2001) similarly argues, the use of different social capital terms such as
social bonds, civic virtue, community networks, social ozone, good neighbourliness
and social glue all contribute to the conceptual confusion and methodological
debates with regards to the meaning and utilisation of social capital. Nevertheless,
the central theme appears to focus on social networks and social contacts that exist
in the community. However, focusing on the community alone places a limitation on
the potential use of social capital. There appears to be a jump towards community
mobilisation with the exclusion of interpersonal social connections between people
familiar with the individual.
In response to the confusion, Woolcock (2001) distinguishes three main types of
social capital. These include bonding (the closeness within family/social groups),
bridging (characterised by weak cross-cutting ties such as friends or friends of
friends) and linking (characterised by linkages between those of differing levels of
power or social status). It is the linking dimension of social capital that the social
connection theory stands on. However, it does not necessarily negate the other
social capital dimensions advocated by Woolcock (2001). The social capital concept
is very broad and has been critiqued for its lack of specificity. For example, Harper
(2001) argues that the social capital concept is not gender or culturally sensitive.
Developed mainly from the west, any application in Nigeria will need to take
cognisance of the cultural differences between the different contexts.
Lin (1999) argues that social capital manifests through social networks. This
definition could be perceived as limited. As Woolcocks (2001) broader delineation of
social capital suggests, social capital permeates beyond the realm of social networks
to encompass social links and social bonds.

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In other words, social capital consists of:

A) Social bridges (networks): Social networks consist of individuals joined in
solidarity in a group, usually tied by a common bond (such as being HIV
positive). Lin (1999) argues that with social networks, there is investment of
social relations in exchange for expected social returns. Belonging to a
network group may maintain social capital/collective assets and enhance
group members life chances (Lin 1999, Coleman 1990, Putnam 1995).
Belonging to a network may improve access to and use of resources
embedded in the social networks. Social networks may include multiple links
of individuals within an institution that works collaboratively for the good of the
group. Apart from social gains, belonging to a social network may also
culminate in financial gain as members of a network are able to reduce risk in
microcredit investments or transmit financially rewarding information even in
informal networks (Burt, 1997, Woolcock and Narayan 2000, Woolcock 2001).
Networks may be formal or informal. Networks may also connect or bridge to
other associated networks and benefit from shared experiences of members
(Woolcock 2001).
B) Social Bonds: As Hirschi (1969) argues, social bonds focus on the strength of
ties within social capital. While it may be expected that strong social ties or
bonds may be useful in a crisis, this may not necessarily occur as in familial
stigma (discussed in chapter 4). This may be due to an expressive function of
stigma as families are unable to cope with the metaphorical or symbolic
associations of being connected with someone who is HIV positive. More
research is needed in this area. Similar attitudes may be seen in inward
looking social structures such as teen gangs that have strong bonds whose
attitudes change towards a member of the group who is suspected of
adopting a deviant behaviour (Gillies 2001).
C) Social links focus on social connections to persons, strangers, groups,
institutions and/or the State for social gains. This thesis differs from other
social capital literature in that it focuses on quality of links rather than quantity
of links contained in social networks (Oturu 2011).The social connection
theory lies within the domain of social links. With social connections, it is the
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quality of links that enable the participant to access HIV therapy. Most of the
participants of this current PhD study did not need networks to access
treatment. They were able to access treatment through social connections.
Just one social connection may be enough for participants to access treatment.
These connections may be familial, formal or informal. A number of these
connections by-passed the support group and enable people to access ARVs
directly from the clinic. This does not diminish the importance or usefulness of social
networks. For most of the participants, it was after they started accessing ARV
therapy that they joined HIV support network groups.
Some of the social connectors were not members of HIV support groups themselves
but played a crucial role in eventually connecting individuals to the groups. Findings
from this research suggest that while social connections played an extremely
important role in establishing initial access to ARV therapy, social networks played a
role which was more about ensuring continued access.
On reflection, the network of People living with HIV/AIDS in Nigeria was a useful
social resource for me to access the participants for my PhD study. However, the
gatekeeper for this research was not formally in the network but was very useful in
enabling me to have access to participants in the network, having built up a strong
reputation and relationships during the many years that he formally belonged to the
network. Networks focus on strength from numbers within the network group and
take solidarity and shared protective functions from belonging to a group with a
common bond (e.g being HIV positive). In contrast, with social connections, the
participant does not necessarily need to belong to a network group. With social
connections, it is the quality of the social connection, rather than the quantity that is
important. A friend, family member, religious leader or even a stranger may connect
an individual to where s/he can access ARV therapy.
Within social capital, the different elements such as bonds and links can vary as can
the capacity to contribute to favourable social outcomes (Granovetter 1973). Lin
(1999) attempts to build an ambitious theoretical social capital model that
incorporates inequality, capitalisation and effects. However, in this thesis only one
element of social capital (social links) is theorised in the emergent social connections
theory.
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As DiClemente, Crosby and Kegler (2009) argue, social interactions are shaped by
the social context in which the social actors find themselves. They argue that rather
than focus on individual level determinants of health seeking behaviour, they
advocate the use of ecological level approaches. Similarly, Hovell, Wahlgren and
Gehrman (2002) advocate a behavioural ecological model to show links between
biological processes and behaviour as shaped by the social environment. They
argue that within skin components (such as genetic, anatomical and physiological
features of an individual) are influenced by outside the skin influences (such as
cultural, community, local and individual level processes) that influence behaviour.
They argue that genetic variations such as ability to learn are influenced by operant
selection and conditioning (reinforcement of operant behaviour), cultural selection
(behaviour contingent on culture) and unlearned and learned reinforcers. Belonging
to a social network group may be a good reinforcer for continued access to ARV
therapy. With Hovell, Wahlgren and Gehrman (2002)s analysis of cultural selection,
it is difficult to define what a culture is and how different cultures may impact on
health behaviour. More analysis of theoretical underpinnings of the ecological
models is provided in chapter two (Smedley and Syme, 2000), while analysis of how
the social environment can shape health seeking behaviour is provided in chapter 6.
The application of the different within skin and outside skin components to study
access to ARVs is also unique because of the issue of stigma. For instance, it is
naive to assume that social connectors will support a person living with HIV just
because the bond is strong. There were participants in this current study who were
deserted by close family but obtained support and social connections to access the
ARVs through empathetic strangers.
There is often an assumption that people familiar to the individual will support the
patient in coping with HIV and accessing ARVs. However, as highlighted in the
stigma section of the preceding chapter of this thesis, findings from this study
suggest that people familiar with the HIV positive patient may and do stigmatise the
patient. The family is the primary unit of socialisation of the individual. Persons close
to the patient at the interpersonal level can have a bigger influence on health seeking
behaviour than the community. For example, some of the participants of this current
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study were motivated by close family members to try alternative remedies such as
herbs instead of accessing ARVs through the influence of those familiar to them.
During the course of this research, I was able to connect a friends sister (who was
HIV positive) who experienced self stigma, to an HIV support group that helped her
access the ARVs. This potential pathway of friends and connections which could be
exploited is not very active. However, one of the research participants suggested
that when she got a note from a support group, it helped facilitate access to an ARV
health care centre.
Coleman (1990) in his publication on social theory contributes to social capital
literature by linking the effects of social capital in influencing health behaviour of
individuals. However, he appears to be focused on social structures and not the
social processes that occur within the structures to bring health benefits. He also
tends to focus on social capital as a resource of the individual rather than that of the
community. I suggest that social capital is a resource that transcends individual,
interpersonal, community, institutional and policy spheres, often oscillating between
different levels. The social connection theory highlights the pathways that the patient
follows through complicated and interconnected social structures in order to access
HIV treatment.
Most of the studies on social capital have focused on the effects of social capital in
reducing crime rates, improving health, educational and economic achievements
(Fukuyama 1995, Putnam 1995, Wilkinson 1996, Putnam 2000, Harper 2001). In
Social Connection Theory it is argued that social connections within the pool of
social capital resource can be mobilised or harnessed not only to passively explain
positive effects of social capital, but also to transform behaviours, structures,
institutions and policies.
Although social capital is potentially helpful in improving access to ARVs, it is not
useful unless there is leadership that harnesses and transforms this resource into a
socially relevant force. It is simplistic to assume that having social capital will
automatically translate to improved health. Indeed, some of the participants in this
current study had extensive social capital but were discriminated against by the
social contacts that they had.

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The findings of this research are similar those discovered by Veenstra (2000) in
Canada. Although some elements of social capital such as attending religious
services and joining social clubs had some relation with improved health in the
elderly, he found that there was no association between compositional effects of
social capital and health. However, there are many quantitative studies that have
shown a correlation between levels of social capital and levels of health (Berkman
and Syme, 1979; Blaxter, 1990; Cooper et al, 1999; Lochner et al, 1999; Rose, 2000;
Coulthard et al, 2002).
Krishna and Schrader (1999) argue that there are various levels of social capital.
They advocate the use of the Social Capital Assessment Tool (SCAT) which
delineates social capital into two levels (macro and micro levels). The macro level
includes formal relationships and structures such as legal frameworks, political
regime and policy formulation processes. On the other hand, the micro level includes
contributions

that

horizontal

organisations

and

social

networks

make

to

development. They suggest that less tangible sides of social capital include values,
beliefs, attitudes and behaviours (cognitive social capital), while structural social
capital includes composition and practices of local level institutions.
Kennedy et al. (1998) demonstrate that low levels of social capital correlate with high
levels of gun crimes in America. The social connection theory may help to explain
the discrepancies in these studies. It could be argued that it is not necessarily the
quantity of social connections or networks that influence health but also the quality of
social connections. The quantitative studies also have limited and divergent views of
social capital which focus on civic participation, voluntary work and activist groups,
professional associations and informal leisure activities.
As Abbott (2010) argues, social capital studies fail to theorise about the pathway in
which social participation translates to health. He argues that such studies are
needed. The social connection theory attempts to not only explain how social capital
facilitates access to ARVs, but also argues that where it is latent or negative, it can
be transformed into a useful resource for tackling HIV related stigma and other
barriers to ARV access. The social connection theory does not necessarily place
emphasis on the quantity of networks. In this research, it is argued that emphasis
should also be placed on the quality of networks.
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Social capital and consequently social connections are shaped by the socioecological context in which the society is located. As Rhodes and Simic (2005)
argue, social capital is also linked to migration and other structural factors. They
suggest that in Eastern European countries high socio-economic inequality is linked
with reduced social cohesion and integration. Similar findings arise in Africa where
there is rural urban migration in search for wealth.
However, the social connections with people in the villages or rural areas still remain
intact. Gillies et al (2000) demonstrate that loss of social connections as people
migrate to the cities are related to increased HIV risks through increased sexual
encounters. However, effective alliances and partnerships between members of
community groups may be effective in influencing positive health behaviour (Gillies,
1998).
Potential downsides of social capital include the use of social networks in organised
crimes and gangs (Halpern 2001). The concept also tends to exclude people who
may not belong to a group of organised interests. Also, social capital is often
discussed in deterministic terms, as though the individual on the final analysis is not
the agent who actively changes his/her behaviour in the context of social capital
forces. As noted earlier, my findings highlight how people may make use of
interpersonal contacts and not necessarily community or club level networks to
achieve their aims.

5.1.1 Disclosure strategies in the literature

Maman et al., (2003) in their research work conducted in Tanzania, suggest that
disclosure of HIV status may assist in stigma reduction. However, this assertion
needs to be interpreted cautiously, as patients from their sample came from one
clinic. Although some interviewees from the study had reduced stigma due to non
association with HIV, other participants largely recounted incidences of increased
stigmatisation after they disclosed their HIV status. The findings of this study are
similar to those conducted by Apinudencha et al. (2007) in Thailand. They suggest
that disclosure of HIV status to the community could lead to increased stigmatisation.
Disclosures can potentially reduce stigma. However, it is important that disclosure be
made to someone who can support and not discriminate against the HIV positive

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patient. Who disclosures are made to and how they are made can increase or
reduce HIV-related stigma.
The different disclosure strategies discovered in this current study are reminiscent of
Glaser and Struass (1965) awareness strategies discovered in their seminal work on
dying in hospitals. However, in it is not awareness of dying that is as much of an
issue as the fear of dying and the fear of stigmatisation. There are some links
however, in that the fear of stigmatisation emanates from the awareness of the
society of the HIV diagnosis.
It is not necessarily the shame that the patients are concerned about. Rather, it is the
fear of the internalised and external social impact of the disclosure of the HIV status
that they are concerned about. In Glaser and Strausss (1965) study, the health care
worker had the power to make the patient aware of his terminal illness. In this
study, it is the patients that have the power to disclose their HIV status to social
connectors who can help them access treatment. Nevertheless, the person with HIV
needs to make contact with the health care system for the HIV diagnosis to be made
through an HIV test. If the patient refuses to take this step, the community could
make up the social diagnosis when HIV infection progresses to AIDS with the
attendant visible features such as extreme weight loss, skin diseases and chronic
cough (Nguyen 2005).
In a similar Grounded Theory study examining the way physicians communicate with
patients to enable them to adhere to HIV treatment, Barfod (2007) argues that
physicians are able to motivate patients to adhere to treatment when they deshame. To deshame is to communicate in such a way as to reduce the shame
surrounding the subject of HIV. However, while Barfods (2007) study investigated
adherence from the physicians perspectives, this current study investigates access
from the patients perspective. Participants accounts in the semi-structured
interviews were also supplemented by informal discussions with health care workers.
This study is also broader as it examines social intercourses that takes place before,
during and after the patient makes contact with the health care system.
Nevertheless, HIV patients in this study do feel shame of diagnosis. Due to this
shame, some of the patients decided not to disclose to close relatives such as
parents or siblings. Instead, they preferred to disclose to strangers who helped them
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access treatment. The core emotion that stops participants from accessing treatment
is fear. In order for social connectors to help, the patient needs to disclose to them
using different disclosure strategies.

5.2 Disclosure to social connectors

Different forms of disclosing strategies emerged from the study. In the case of HIV
infection, due to the long incubation period of the disease, the HIV status of the HIV
positive person is not visible until his/her health deteriorates. Hence, it is possible for
the patient to hide the diagnosis. However, in this research, it was observed that in
order to access treatment, the patient has to confide in or disclose to someone. This
disclosure however, makes the patient vulnerable to stigmatisation as evidenced by
discrimination by those that s/he discloses to.
In other words, disclosure effectively moves a person closer from the state of being
discreditable to the state of being discredited. As discussed in the last chapter,
Goffman (1953) argues that revealing the presence of a discredited attribute may
lead to a person with a stigmatised attribute to be discredited by the community.
Despite this, the participants interviewed in this current research reported that
disclosure is useful in order to access ARVs.
The HIV positive person who refuses to go for treatment because of fear of stigma
ultimately enters the stage of being discredited. This occurs when the persons
immune system fails and s/he begins to exhibit visible signs of opportunistic
infection. Therefore, ARVs can theoretically prevent the person with HIV infection
from being discredited. There were a number of different ways of disclosing reported
by interviewees and as part of the process of building theory, these have been
categorised into a series of different typologies. These include compassionate nondisclosing, selective, supportive, open and indirect disclosing. These are discussed
in more detail in the next section of this chapter.

5.2.1 Selective disclosing

The first type of disclosing strategy is selective. This term refers to the strategic
disclosing of HIV status to people who will support and not discriminate against the
patient. This is often a difficult decision to make. In order to disclose, some of the
participants reported engaging in stigma testing. Issues surrounding HIV are

166

discussed informally and the responses of the potential confidantes are gauged. As
evidenced by the following quotes, if the responses are discriminatory, then the
patient will not disclose.
I feel their reaction will be bad because at times I use to talk about it. By saying HIV
does not kill. HIV is a virus. There are sicknesses that are worse than HIV that
people have. They will be saying nooo. With the action and the answer I got from
them, I know if they know, they will make it affect me. (Anabel, 29 year old
Seamstress)
Usually, participants talked about disclosing to their spouses or partners. Others
disclosed to religious leaders or close family members. Jimmy, a 37 year old
unemployed male patient on ARVs suggested that before he disclosed to friends, he
engages them in discussions (stigma testing) to see if they may discriminate against
him or not.
Because they see me wear the T-shirt, even my key holder has a condom kind of like you know gold circle so all these things ( he tingles his key holder) when they
see them they are asking me where did you get them and I tell them all these
programmes that I do, so from there we start discussing about HIV and so I know the
level they understand and the stigma which they have attached to HIV and so some
(people) based on that I start to withdrawyou understand. There are some that the
way they will be addressing issues of HIV, youll know that kai! This onehe he
even if you expose the handshake theyll not shake. (Jimmy, 37 year old
unemployed male)
Similarly, Martha, a 35 year old female teacher said that she decided not to disclose
to her work colleagues, because they appeared to have a tendency to gossip and
could even disclose to her students.
Yes. If they know, they can still discriminate. Because even the way some, even
though we are teachers, sometimes they quarrel in that staff room. They quarrel.
They gossip. The way I look at some women, some of them will say every time Im
going to the hospital. I said ok. You. Have you never been sick in your life? So, they
want to pull my leg to tell them what is inside my heart. But I will say that its chest
pain now. The chest is paining me seriously. So, I cant expose to them. The way
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they are eager to know what is wrong with me, if I tell them they will tell the even
students. Yes. Thats why I cannot tell them. (Martha, 35 year old teacher)
However, different strategies were utilised by different participants on who to
disclose to. Hence, it is difficult to predict who participants may disclose to and the
social response following the disclosure. Disclosures were usually made when
people needed social support to help them cope with the effects of the HIV
diagnosis.

5.2.2 Supportive disclosing

Supportive disclosing was a strategy developed by some participants. This is the
term applied to disclosing to someone who is trusted in order to obtain emotional
support. This was usually a friend, religious leader or close relative. The basic
ingredient appears to be trust. Some patients decided to disclose to their partners,
while others preferred to disclose to strangers who could help them access
treatment.
Patricia, a 40 year old teacher on ARVs informed her husband about her diagnosis
for support.
First of all, I told my husband. Then I was pregnant when I knew that I was positive. I
went for antenatal and they told us that we should go for HIV test. Thats how I knew
my status. And at that time did not even do counselling. Nobody even counselled
me. When they came with the test, they just paste it at the back of my folder. Nobody
even said this is this or this is that. (Patricia)
Similarly, Felicia, a 31 year old female business woman on ARVs disclosed to her
husband who provided her with support.
Researcher: when you found out about your diagnosis, did you tell anybody?
Felicia: I told my husbandmy friends.
Researcher: What was your husbands reaction?
Felicia: He did not react because he knew. I got it from him. So, immediately I told
him that this is what the doctor said, he said that we should be praying. That one
day, the cure will come.

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5.2.3 Compassionate non-disclosing

Compassionate non-disclosing refers to the non disclosure of HIV status to very
close family members such as parents because of the emotional trauma, stress and
mental health implications that such disclosure may have. Some of the participants
are held in high regard by their parents. They feared the loss of respect from them as
well as the shame of being diagnosed with HIV. This strategy was also used by
some participants to ensure neighbours and people close to them do not know about
their HIV status.
Linda, an HIV positive single mother on ARVs refused to tell her family about her HIV
diagnosis because of the shame and negative emotional impact it would have on the
family.
Researcher: Did you tell anybody when you found out about the diagnosis?
Linda: Up till now, my family does not know that Im HIV positive. Its only my friend.
She is in Abuja here. So, shes the only person that knows up till today.
Researcher: Why didnt you tell your family?
Linda: Actually, my mother didnt go to school and my father is late since 1984.
Researcher: Sorry.
Linda: So, our mother takes care of us. She didnt go to school. So, sometimes when
I feel like telling her, I feel she wont take it as someone who has been in school
That is one thing I considered because she is hypertensive. Yes, and any little thing
shell take it to heart.
Similarly, Jimmy, a 37 year old single HIV positive male patient on ARVs refused to
tell his mother because of the emotional difficulties that such a disclosure will
provoke.

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The one I followedmy mother, the reason I refused to tell my mother was because
of the love she has and because of the awareness she has. They feel that if one is
HIV positive, he is finished. So if I tell her, it will create a problem to herYou
understandshe will be down completely. (Jimmy, 37 year old unemployed
graduate)

5.2.4 Open disclosure

This was a strategy utilised by people who had high self esteem and felt that they
should not be ashamed of their HIV status. This often involves going on national
radio or television programmes, campaign rallies and openly disclosing their HIV
status. Although it could be argued to be empowering, it also opens the door widely
for stigmatisation. One of the participants who openly disclosed was barred from
having any contact with her sisters family.
Whereby I bring myself, whether I will see help and there is not help. What is the
need of spreading it again. Because, since my in law watched that programme on
the TV finish, that is when he now drove me out of his house. I dont even enter there
to greet or to touch his children. Because, it was only his wife that was aware. That is
Nigerian system. (Phela, 31 year old business woman)

She expressed regret at having openly disclosed as she could no longer see her
nephews or nieces because of the disclosure. This kind of reaction may have been
because she did not inform her family before going on air. Another participant
(Viktor) who openly disclosed was forced to resign from his political position since he
was said to be weak in contracting HIV. A third participant (Monica) was taunted by
members of her community for disclosing her HIV status on national television.
And emI think at some point in my life, I have been stigmatised even in the club
that I belonged to. In January 2005, I was elected the president of a community
youth club and in Feb. 7th 2007, I tested positive to HIV. But I never disclosed my
status to my club members until I went on air. So, when they saw me on TV, on
newspaper, they were very mad and they came back and said that I have to resign
or face impeachment procedures. So, it was traumatising. (Viktor, 29 year old social
worker/activist)

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Monica: Like I said in the communityin the immediate community where I am now,
are not aware of my status. Unless if they see me on TV. Because I used to go on
TV for programmes. But nobody has had the audacity to walk up to me and ask me if
Im the one they saw on TV.
Researcher: Nobody has asked you Are you not the one we saw on TV?
Monica: Nobody has asked me. But from my own village, they have called me to tell
me I saw you on TV. I will say Yes. You saw me on what channel? They said
NTA. Ill say do you have cable? you can watch me on CNN
Researcher: (laughs)
Monica: (Laughs) so because I hardly goMaybe in fact for the last 3 years Ive not
been to the village. Where will they see me? (laughs) (Monica, 37 year old social
worker/counsellor on ARVs)
Many of the participants were shocked at the familial and societal reaction to open
disclosure. Consequently, they tended to shy away from further media exposure.

5.2.5 Indirect disclosures

Indirect disclosure refers to situations where the patient leaves clues about the
diagnosis but does not overtly disclose his/her status. This may include leaving
hospital appointment cards openly for everyone to see. Monica, a 37 year old female
counsellor, recounts how she asks her family members to bring her bottle of ARVs
so that she can take her medication instead of directly disclosing to them.
So it was not difficult for me to in fact I have not sit down like this to tell them.
Sometimes I ask them to bring my drugs and the container is there. If they are
disturbing me too much Ill say Im taking ARVs oh! Dont kill me before my time.
(Monica, 37 year old social worker/counsellor on ARVs)
Another form of indirect disclosure, involves disclosing to someone who then
discloses to the intended person. For example, someone may disclose to a friend to
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disclose to his/her family. This form of indirect disclosure is demonstrated by Billy

who disclosed to a friend and asked the friend to disclose to his family members.
Ooh. My family members, it was not easy for me to tell them in the first place. I had
to assign one of my close friends to tell my aunties. My younger ones, I told them. So
my aunty came and met me that why cant I call her and tell her directly. She
saidwhat she told me is that she is ready to spend her last penny to see that I
survive. That I shouldnt bother. I shouldnt be afraid. (Billy, 38 year old computer
administrator).
If or when the disease begins to manifest in form of signs (weight loss, rashes) and
symptoms such as chronic fever, the patient is forced to look for treatment of these
ailments. The patients usually disclose to a social connector that can link them to
where they can access treatment. A social connector is a social actor who is able to
connect the patient to where s/he can access ARV therapy.

5.3 Individual and Institutional social connectors

There are individual social connectors and institutional ones. The most common
individual social connectors were family members and friends. In the African setting,
the family members include both nuclear and extended family members. Also at the
individual level are pastors, imams and other religious leaders. Nigeria is a very
religious society and religious leaders play a key role in an individuals life. Patients
may prefer to listen to what a pastor says rather than a doctor. Some of the
participants had one social link to obtain access to ARVs. Others needed multiple
social connections to obtain access.
Timothy, a 36 year old single driver was supported by his mum to access the ARVs.
Timothy: The first time? I was sick. So, when I was sick. By that time, the way that
people talk about HIV, it was terrible. So, I was scared. So, when my mother heard
that people are talking that I am HIV positive. So, she invite out and advised me that
she is the one that born me. Anything that I will come across, she, she will bear it.
So, I should not be afraid of anything. Let us go to the hospital. She will take me to
the hospitalThe way my mum support me, in fact, I dont know what to say. The

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money that my mum spent to make me to be alive, I dont even have something to
make her know that I appreciate. (Timothy, 36 year old driver)
Timothys mum also provided financial support for transportation, payment for tests
and the ARVs.
When they know that Im HIV positive, they called me. They directed me to one

nurse. The nurse counselled me. She was telling me that anyway, people like me,
we get luck. Before, the medicine is not in Nigeria. But now, the medicine is in
Nigeria. But that time, it is money that they used to buy. When I heard of the money,
7000 a month, I was scared. So I came out and told my mum that where can I get
this amount? She said dont worry. So, they asked us to bringthat time they use
money to do CD4 count. By that time, it was 7500. So my mother went into the
house and brought the money. The next day they asked me to come with the CD4
count. My CD4 count was down to 115. So, the doctor placed me on ARVs. So I
started to take. I was thinking that maybe my mama doesnt have money but she had
already planned for it. So when I come outside, I told her that this is what is
happening. She said lets go to the pharmacy. And when we went there we paid
7000. They started giving me the ARVs. I took it like 3 times and it come out like
nothing do me before. I recovered by that time. (Timothy, 36 year old driver)
The social connections for accessing ARVs may be multiple. For example, Linda, a
27 year old female social worker, was linked by a doctor to the Ministry of Labour
and Productivity, where she was linked to Saul, who referred her to two ladies, who
connected her to an organisation called Nephwan (network of people living with
HIV/AIDS in Nigeria) who supported her in accessing her ARVs.

So in 2003, in that same 2002, someone described at thissecretariatFederal

Secretariat. There is a Ministry of Labour and Productivity that they are HIV. So, the
doctor now directed me to go and see somebody there. That is em Saul. Somebody
Saul. I met them. From there too, I met two ladies. Unfortunately now, they are late.
The two. Thats Laura and Bekky. Two of them are late now. So, I met them there,
the other people there. The other people there now joined with those two ladies that I
mentioned. So, they are the ones that linked me with Nephwan. That was 2003. That
was how I came to know Nephwan in 2003. (Linda, 27 year old female counsellor)
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Institutional social connectors include HIV support groups. These are groups made
up

of

HIV

positive

persons

who

encourage

themselves.

As

evidenced

from the following quote from one of the interviewees HIV support groups are able to
provide information and connect newly diagnosed persons to where they can access
ARV therapy:
Emits just the support group. Sheer Hope support group. Then, we go to the
meetings. We share experiences and tell them your own problems. We share
experiences together they advises you on how you should be taking your drugs and
even if one fell sick within the meeting, within the support group, they raise up what
is within and if you have any knowledge of what is disturbing him, how he can go and
that thing will be cured. Let him know the best thing they will give you direction on
where to go for yourself and your ARVs. (Taylor, 40 year old paramilitary officer)

Similarly, Raphael, a 45 year old male cleaner, was connected to the ARV clinic
through an HIV support group that he joined.
Researcher: So, how did you know about the clinic? What made you to go to that
particular hospital?
Raphael: It was the support group that introduced me to the clinic.
Researcher: So when you went to the clinic, what happened?
Raphael: I had to see a counsellor. Because when I started there was counsellor
then. So, the necessary tests were carried out. I went with my CD4, though they
stillwith my CD4they stillall other tests were done.
There is a thin line dividing individual and institutional social connectors as the
individual social connectors often are part of a wider institution. Some religious
leaders were also said to support patients to access treatment. One of the
participants recounted how his pastor drove him down to an ARV centre and
facilitated the connections for him to access treatment.
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Religion has a role to play in building a bridge to ARVs because those clergymen
they stand a better grounda very good position to help. If my pastor did not take
the decisionbecause he is the one that said that he wants me. And I have never
been to Bela, neither do I know where BUTH is. But he was processing his visa to
London at that time. That is what delayed the whole thing that reached the point, I
fell sick. Right from January when I told him he said that I should not worry. That I
should settle down. That he is coming to take me to BUTH. So at the present he was
busy going up and down for his visa. He will want to travel to UK. So up till March he
didnt get it and before he came I now fell sick. When he heard it, immediately he
come, immediately when I was discharged from the hospital, he now picked me on
his back with my elder sisters and my younger sisters. They rushed me to BUTH. So
they play a vital role. (Billy, 38 year old Computer administrator)
Amongst the religious institutions that supported PLWHA, the Catholic Action
Committee on AIDS stood out as being very active as well as the Redeemed
Christian Church of God. The religious leaders were very useful in supporting
members to access treatment. However, some religious institutions stood as
barriers. In some churches, members were urged to pray instead of taking the ARVs.
Findings from this research suggest that some patients were discriminated against
by their church members. Discrimination took on different forms, ranging from
exclusion from the church, open announcement of the HIV status to members of the
congregation, to refusal of marriage of HIV positive couples.
Because we wanted to spread the campaign but the last one we had last year in my
support group, it was done in my support group in Lugbe with the clergies... And the
clergies willwhen we interacted with them, we found out that some they dont know
anything about HIV. Such that if a member is found to have HIV, he will be
disfellowshipped Yes, so such people now tend to be afraid. Whenif it happens
to ehfirst personto Mr A, then Mr B has to be sceptical and start spreading the
HIV within the church. Because he wouldnt want to be disgraced as the other
oneyou understand, so we are telling them that they have to create enough
awareness even within them, such that the Anglicans now they arenow they have
been operating HIV programmes in their churches very well such that even if you are
a clergy man, youll not be disfellowshipped. They consider you to be important and
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relevant to the church. So that is the problem we are having with them. (Jimmy, 37
year old unemployed male).
These suggest that much work is needed in providing religious institutions with
information about HIV. Training of religious leaders is needed on how to support
patients living with HIV to access treatment. At the international level, international
donor agencies and governments of developed nations also applied pressure on the
Nigerian government to provide free ARVs (Oturu 2006). This greatly helped to
improve access. These social connections are very important to help the patient
overcome different barriers such as cost of transportation, lack of knowledge and
stigma.

5.3.1 Social connection tools

Findings from this study suggest that social connections tools are employed to
facilitate access to ARVs by participants. These include notes, letters and phone
calls.

5.3.1.1 The note

The process of note giving is an important social connection tool. Note giving is a
common influencing tool used in Nigeria. An influential person writes a request on a
small sheet of post it paper, complimentary sheet or complimentary card. As seen in
the case of Anabel, people who initially found it difficult to have access to their ARVs
had doors opened when they presented a note from someone influential.
It is my sister. That my younger sister. She works there She is em She is with
the house of rep. She gave me referral (note). So those weekthat is 5 times I was
going, I was trying to make sure they accept the referral from me before I will start
anything. That was why I went about up to 5 times. (Anabel, 29 year old seamstress)

5.3.1.2 The Letter

A letter is a more formal approach to helping people access ARV therapy. The letter
is usually written from a reputable organisation that knows that the health care centre
concerned should have enough resources to provide access to treatment. A letter
from an influential agency such as the Network of PLWHA or the Ministry of Labour
and Productivity helped some people to access treatment.

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Then the doctors were not ready to give me drugs again because they felt I have
done shakara (showed off) for them. (giggle) That is why I had to come to the
network to get a letter. With that letter, they attended to me quickly. (Monica, 37 year
old social worker/counsellor on ARVs)
A letter from the Federal Capital Territory Action Committee on AIDS (FACA) made it
easy for Timothy to access free treatment from a Nigerian government ARV
programme.
The second time, I go there and it was FACA that gave me letter to the medical
centre. That is why when I reached there, I gave them the letter. They came and said
that I should go and buy card. So when I buy card that is the only money that I spent
in the hospital. They do everything free for me. They started giving me the medicine
free. Up till today, Im taking it free.(Timothy, 36 year old driver)

5.3.1.3 The Phone call

A phone call can help facilitate access although it does not appear to be very
common. One of the participants admitted that she was given access to the ARVs
after her physician made a phone call to a colleague who was conducting a research
trial on a new antiretroviral drug. Following the phone call, she was admitted into the
programme and has been on ARVs since then.
So he phoned the woman. The woman said that its just that morning that they
finished. They just selected the lastthe other doctor said cant you do anything?
She said no. Then he said I will send the patient to you. Do whatever you know that
you can do to her. So he now gave me a note. The following day, I went to the
hospital. I saw the lady. Immediately the lady saw me, she felt sooo, so you know, so
sympathetic. She said theres nothing we can do. She just registered my name. So
this is how I started with their drugs for one year. So, everything was free. (Sabrilla,
60 year old female nurse on ARVs)
Social connectors assist HIV positive patients to access treatment. This may occur
directly or through using tools as outlined above. As the patients pass through the
access continuum, they go through some stages. The stages theoretical code is
used to weave the fragmented data and make sense of how the HIV positive access

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treatment with the help of social connectors. It draws on the pathway model as
discussed in chapter 2.

5.4 Stages of access to ARVs in Nigeria

In this section, I analyse the stages that patients pass through to access ARV
therapy in Nigeria. The stages include rejection, alternative access, desired access,
realised access, disrupted access and continuous access. The stages are not
necessarily linear or occur in sequential order. These are possible stages that
patients may pass through to access ARVs. Patients may pass through some or all
of the stages to access ARVs.

5.4.1 The stage of rejection

During the stage of rejection, the HIV positive person rejects the HIV diagnosis and
refuses to believe that s/he is HIV positive. This is demonstrated in the following
quote from one of the research interviewees:
When I attended antenatal at Asokoro General Hospital, so they now asked us to go
and do HIV test. When we go for HIV test, when I tested positive, I said I reject it
because I didnt believe it. So I now tell them that I reject it. (Phela, 31 year old
business woman)
Sub categories of stages occur within this stage. The patient often passes through a
stage of contemplation and guilt following exposure to high risk behaviour such as
unprotected sexual intercourse. They may develop symptoms which do not respond
to regular treatment. As Austins case suggest, both of these issues may prompt
people to do the HIV test.
I was very feverishI had serious diarrhoea. I lost a lot of weight. You know, I was
completely, you know almost dried. And I could notI could not eat very well. I could
not eat very well but em my wife forced me to eat some vegetables and the rest of
it. So, so I continued until she insisted that I go to the hospital. (Austin, 56 year old
engineer on ARVs)

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The stage of rejection is linked to self-stigma. It is usually at this rejection stage that
the participants experience self-stigma. During the time, they do not have desire to
access ARVs. In contrast, as Patricia recounts, they may prefer to isolate
themselves. This can have dangerous consequences.
Patricia: (laughs) Isolation. I can isolate myself because I will begin to look as if
everybody passing by knows that Im HIV positive or that people are discussing
about me. You see somebody begins to isolate himself. He begins to dissociate
himself from people. When they are doing something. Before I used to go to church
activities. I now stop going for church activities. I start withdrawing. You know
friends. I start withdrawing from friends. Some people, even office they will not even
go.
Researcher: Does it stop some people from taking treatment as well?
Patricia: Yes. Because you think that if you go to collect drugs, everybody will see
you and know that yes, you are HIV positive. Its a big issue. If you dont fight self
stigma, you cant stand anywhere out because anything you are doing, you are
scared. You are always like Ah. Everybody will see me. Its just like, it happened to
me. If Im coming out its like everybody now knows that Im HIV positive. Im this. Im
that. So very soon, Ill die. (Patricia, 40 year old teacher on ARVs).
This is followed by a stage of affirmation, when the HIV test is done and the result is
positive. There is a stage of denial whereby the patient refuses to believe the HIV
diagnosis. This may be followed by the stage of reaffirmation, when the HIV test is
redone or some other confirmatory test (Western Blot) is done to confirm the HIV
diagnosis.
The counsellor now gave me a referral note that I should go to National Hospital or
State House Clinic or Specialist Gwagwalada or any of the General Hospitals to
confirm it. Whether their machine is not OK. I now said OK. She now gave me the
referral note. I now went to national hospital. So, luckily I met a counsellor there from
my place. He now encouraged me. I now did it again. The result now test positive. I
said Ah. This thing is the same.(Phela, 31 year old business woman)
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This is followed by the stage of emotional turmoil. The patient is often distraught with
the diagnosis. During this stage, participants reported experiencing bouts of self
stigma, isolation, anxiety or depression. He or she may try to reject the disease,
declaring that its not my portion.
OK. 2000, I was sick by that 2000. Or that em 99, I was sick to 2000. So, I wasyou
know, if I go to the hospital, they will say its malaria, typhoid, I will treat it. Small time
I will you know, I will be sick often until that 2000. I finally got to the hospital. So, I
took the test in Kaduna. So, I refused to accept my status, saying I reject it in Jesus
name. You understand? So I refused my status. You know then the stigma was very
high. That is, I am from Kaduna. So you know, when you go to that side you will
know that even up till now, we are still having that stigma. (Linda, 27 year old single
mother and social worker on ARVs)
Self stigma may cause some persons living with HIV to die as they refuse to take
their ARV therapy. This is demonstrated in the following quotes from interviewees:
The person is in CSO here. The person is supposed to have started drugs on time,
but he didnt start until when he was about dying. He was one strong person like that.
He refused the access. He stigmatised himself before others. (Jane, 35 year old
receptionist)
If it is others, they dont know how to open up because this thing killed one of my
friends. Because when she was in school, she refused taking her drugs because of
her friend. She doesnt want her friend to know the kind of drug she is taking and she
just died like that. So, that is how it is. They still stigmatise themselves and they dont
like telling people. They only keep it within themselves. They dont want other
persons to know. So, that thing affects them. Most especially because when they are
sick, the relatives dont know the kind of hospital to take the person. (Shekira, 19
year old student)
I was keeping away from people. Staying, isolating myself. Initially, as of the time I
got it, it was when I had the problem that I began to have knowledge about itSo, I
was isolating myself (Raphael, 45 year old male cleaner).

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During this period, the patient may then enter into the stage of disclosure. The
patient has to make a decision as to who to disclose and when. The different types
of disclosures utilised by the participants have been discussed in section 5.2.
Following disclosure many of the participants suggested that they passed through
different forms of stigma. He or she may receive social connection support or
religious support or may be advised to try alternative remedies.
The religious leaders have a lot of influence on access to ARVs. One of the
participants gave information about how a Pastor provided him with transportation
and took him to an ARV centre. As reported earlier, some religious leaders stop their
members from for taking the ARVs. There were recollections of people that died after
their religious leader advised them to stop taking their drugs.
If a Pastor came out now and tells you that dont access drugs, there are many
people that will not access drugs. Dont take these drugs. You know there are many
people that have died because of their pastors in the church that dont take drugs.
They will go and be there. They will say they should go and fast and pray. You will
be there in the church. You will be fasting and praying when you dont have the
strength. Thats how some people die. But if pastor says Go and take your drugs.
This drug is good. Its this and that. You will see people will follow and do it.
(Patricia, 40 year old female teacher on ARVs)
Depending on if the disclosure is made and to whom it is made, the patient then
follows some other main stages.

5.4.2 The stage of alternative access

This stage denotes the point where HIV positive person tries various alternative
treatments to ARVs. These could range from spiritual treatment such as prayers and
incantation, to using of local herbs, to using of organised herbal products from
Chinese companies or food supplement companies. The social actors involved at
this stage could range from the traditional pharmacist, the herbal marketer, herbalist
or pastor of a church. Forever Living (Nigerian) products were used frequently as an
alternative to ARVs. Others used local herbs. Some of the herbs were boiled in water
and drunk. Others are bathed in. When these fail, then the patient begins to look for
pharmaceutical treatment from the organised health care system.

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The stage of alternative access is still linked to self stigma and the fear of stigma as
the patients are afraid of other people being aware of their diagnosis. Hence, they
look for alternative treatments rather than the orthodox health care system. The
following quotes from participants in this study describe situations where people are
in this stage of alternative access:
It was a terrible situation then because at that time, the stigma was so high. It was a
terrible situation. Em. In my own case. Me, Im going to speak because Ive
experienced it already. I was going from one herbalist to another. That is to say,
eating herbs, but all was in vainI was moving from one stigma, hiding myself.
(Raphael, 45 year old male cleaner on ARVs).
Women and men, they dont want to come out. If they are feeling sick, in their body
instead of them to come out and say the way Im feeling before, thats not how Im
feeling now. Let me go and check myself, they will not go. They will be going from
herbalist to herbalist. There and there, they will make them concoctions and they will
start taking. Its when the situation is worse, that is when they will start coming.
Some of them, they will even give up. The awareness is notmost especially our
village side. Our Kaduna village side. We need to let them improve the awareness
much. (Halima, 37 year old unemployed woman on ARVs)
They said the man used to (giggles) that has a cure for HIV. But there is no any
cure. If you go, they will give you leaves. You will go and cook. Youll cook, youll
drink and youll bath. I took it for many years. (Patricia, 40 year old female teacher
on ARVs)
In some cases, there is no desire to access treatment because of the life long
implications of taking ARVs. This is demonstrated by the following quote by one of
the participants (Viktor).
You know, a lot of guys were introduced to me with a lot of China products and
medications that they were giving me. So, I was buying some drugs for 30,000 per
month and they told me I was going to test negative after a while. So, I bought the
drugs for about 3 times and eventually my result was the same. I was still fishing. I
wanted to get out of this drug for life prison. You know? So, eventually nothing
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worked. So, I had to take the most scientific, you know, highly active anti-retroviral
therapy. (Viktor, 29 year old social worker)
Other patients go for spiritual therapy in the form of prayers. This could be to help
them cope with the HIV diagnosis. Similar findings were discovered by Collins et al.
(2008) in their South American study where they found church girls used faith in God
and prayer as tools for coping with their difficult health circumstances. Patients could
also go to spiritualists/herbalists who attempt to cast out the HIV spirit. Some
patients go to religious centres where pastors attempt to pray the HIV away. It is
important to target these actors at this stage as they need encouragement to access
HIV treatment. Accessing treatment could be interpreted as a negative thing- as not
having faith in the prayer to heal. The following quotes describe the experiences of
participants who practiced using prayer as a form of therapy.
I was low. I was managing with fruits and prayer. (Celina 45 year old female
housewife)
There is medicine that he is going to give me but its honey. He now pray in the
honey and he now give me the honey. that I should take it. That is that this is the
thing God showed him in mountain to use to kill HIV and heal mad people. That its
this honey that God told him to use to be healing people. (Felicia, 31 year old
business woman)
Some of them, the pastor will even tell them that they should stop taking their drugs.
That its not the HIV. That its just that they send you an attack from the village. So,
they now use HIV to camouflage. That its HIV. Which I know of one like that, that
although God spared the girls life. She stopped the drugs in the name of its
witchcraft. At the end of the day, she went back for test. When the pastor prayed, the
Lord chosen him. When she went back for test, the test shows that it is negative.
She went back again. Its negative. She went back not knowing that the drug that
she has been taking for years went and drove that virus. Hide the virus inside the
joint, which nobody can detect itBut after some months, that thing came back
again to hit her seriously. Which, she could not be able to stand up. Now she is lying
down there at national hospital. (Shekira, 19 year old student)

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5.4.3 The stage of desired access

This stage describes the point where people are looking for information about how
and where to access antiretroviral treatment following failure of the other alternative
treatment regimes. Usually by this time the disease would have progressed.
Participants reported friends and relatives commenting on their loss of weight or poor
appearance. Prior to 2004 when the ARVs were made free, people passed through a
lot of problems before they could access the drugs.
It was a hell even to put your name on the list. It was a hell. Some people passed
through hell before they accessed the ARVs. (Patricia, 40 year old female teacher
on ARVs)
It is expected in the society that a family member or friend who is working at the
ARV centre should facilitate access. However, this may not necessarily occur again
perhaps due to stigma. One of the participants expressed regrets that her sister was
unable to facilitate her having access to treatment even though she worked in an
ARV centre although she was helping other people. This may be due to projectory
stigma she may experience if her co workers know that her sister is HIV positive.
Another factor that stops people having access is lack of procedural knowledge. The
one participant who was unable to access ARV treatment failed because she did not
know where to go to or the procedures of how to access treatment. She had no
social connector to inform her on how to access treatment.

5.4.4 The stage of realised access

During this stage, the patient passes through the hurdles of laboratory tests and
hospital bureaucracies to access treatment from the medical centre. In order to
access treatment, a positive HIV test and a CD4 count of less than 200 cells/mm3 are
needed. The patient may then start taking the ARVs. The ability to continue taking
the drugs depends on various factors such as funding for transportation, consultation
fees, accommodation and the social environment in which access takes place.
Those who travel far are those who have the money and they want to avoid stigma
and that is self stigma. They dont put into considerations the risks. You can be
knocked down by a vehicle. Your vehicle can have an accident. You can even go
there and there is no accommodation. You know. You cant say leave a place like

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Kano and say you are coming to Abuja for drugs when you dont have money to pay
for hotel or you dont have any brother to stay with. In fact if you come to your
brother this month and you come next month, on the third month, hell ask you old
boy wetin dey happen wey dey make you come? (i.e whats happening that makes
you come here so often?).This month I go hospital.. next month who you come see.
So you are still at zero. The only way is go and lodge in a hotel and poor man cannot
be travelling from Kano to come and lodge in Abuja at N10000 a night. So the poor
man if he knows that it is in his local government when he is looking for money to
eat, you think hell run away from there? After all, everybody goes to the primary
health care centre. (John, 48 year old military officer on ARVs)

The attitudes of the healthcare worker that the patient interacts with also play a vital
role. There are individuals that move to a geographic location far from where they
access treatment but choose to continue receiving the treatment because of the
friendly, non judgemental attitude of the health care workers. On the other hand, one
of the participants described how he stopped going for treatment because a health
care worker (nurse) reprimanded him for having a sexually transmitted disease.
At Naima, Nigerian Institute of Medical Research, the first counsellor that I met was
a woman that was old enough to be my mother. And then, I think she was asking me
about some complaints and I said yes I had some complaints. Some itching at my
penis and stuff like that. And that was some time, months after I tested positive. And
so, I think its gonorrhoea. You know? So, she felt, I mean her attitude was so bad.
You know? She was condemning me attitudely. And her expression was like you are
a young person. You have HIV. Its not enough for you. You have STIs again and all
that. So, that was the last time I went to that clinic. (Victor)

5.4.5 The stage of disrupted access

During this stage, the patient may stop taking the drugs. This could be due to a
number of reasons. Some may realise that they are physically healthy and decide
that there is no need to continue treatment. Some may be encouraged by religious
leaders not to take the drugs as they are now healed.

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They consider you to be important and relevant to the church. So that is the problem
we are having with them. Some will say that you dont take your drugs that you are
healed, you are that. Prayers can do this thing. You understand. So as some of
them they are increasing more stigma and making other people not to come out.
Hiding and spreading(Jimmy, 37 year old unemployed graduate)
Some patients test HIV negative after taking the ARVs for some weeks. This is
because the HIV virus has been suppressed by the ARVs. However, the HIV virus is
still present in the body. They may test at another laboratory facility. As Linda
suggests, when they discover that their viral loads are suppressed and they test HIV
negative, they stop taking the drugs only to relapse with resistant HIV infection.
Linda: (giggles) You know like all these people. You have some people going to
church. They are HIV positive. They are later told that they are HIV negative. I also
believe that these ARVs when you take it for some time, when you go back for the
test, it will show HIV negative. And we learn that even when the person is HIV
negative, he should not stop the drugs. So, now if you ask me to pray, Do fasting
and I dey take these drugs now, maybe the drugs come dey. You understand.
Because some pastors do ask their members to stop taking their drugsthe
ARVsbecause they are trusting God. MiracleI believe in Miracle but
Researcher: When they stop, do they continue falling ill?
Linda: for some people when you stopby the time the HIV will come, it will come
with a full force. You know the way if you are training a fowl? All these our local
fowls. When you cage them, you open them very early in the morning. You know the
way they use to come out? Anything they see, theyll put their mouths. That is the
way with this HIV. By the time you stop the drugs, when the HIV Hmmmgets
back, it will come with a full force.
Some of the patients may drop out due to financial reasons. For example, Timothy, a
36 year old male driver stopped taking his ARVs because of the large amount of
money his mother was spending on him.
I took it like 3 times and it come out like nothing do me before. I recovered by that
time. I thought about the money that my mummy is spending. I just stopped it and
ran away from my mum and came to Abuja. So, when I came to Abuja by then in
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2004, it was N1000 they are giving out. So, as I no sick again I no even care to go to
the hospital but I was going HIV programme every day. I thought that nothing will
happen to me. So in 2005, I came down in factthat everybody will think that I will
die. (Timothy, 36 year old driver)
Other people living with HIV may drop out due to the organisational arrangements
that lead to stigmatisation. For example, a patient may see another patient who
attends the same church or mosque at the clinic and so refuse to continue so as not
to be associated with HIV.
So, when em this girl, Ive known her for some time. She lost her husband. Weve
been in committees. Other committees in the churchharvest, some other
committees, you know in the church. When we advocate for volunteers to come and
assist with PACA, everybody scares away. But, one day she was so surprised that I
met her at the hospital and she was about to access her drugs when I came in.
There was nothing she could do... the moment you see someone in that clinic, you
know thats what they have come for. So, we met there. There was nothing she
could do. (Beatruce, 44 year old construction worker)
Yeah. I think it has to do with stigma. So many people are afraid of stigmatisation
and they dont want to see their family members and they dont want their friends to
know that they are accessing such a treatment. So, I think they have right but it is
becoming a problem in so many other places. People cannot really exercise that
fundamental human right. You know, they cant transfer you to a treatment centre
that is closer to your community and that may bring a barrier for you to access your
drugs. (Viktor, 29 year old social worker/HIV activist)
Usually, after staying off the ARVs for some months, the patients tend to relapse.
Some of the patients who go through the disrupted access stage may overcome
these obstacles and continue treatment. When the symptoms start returning back or
their health begin to worsen, the patients then decide to return to the health care
system and continue to access their ARV therapy.

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5.4.6 The stage of continued access

Those who overcome the above barriers may continue accessing treatment. Most of
the patients appear to continue to access treatment in centres that are far from
where they live so that people that live around them do not know of their HIV status.
They seem to feel that it is essential for them to see the same health care personnel.
Despite the long waiting times, participants reported preferring to continue receiving
treatment from the place where they were first started treatment. During this time the
participants go through the process of normalising where they say that they begin to
get themselves back. The symptoms of weight loss, rashes and/or chronic cough
subside and they begin to look normal. As argued earlier in chapter 4 and evidenced
by the following quotes, because they look physically healthy, unless they disclose
their HIV status, the participants may not experience stigmatisation or may
experience a reduction in stigma.
That is the difference is clear. Because maybe when you are sick in my own case,
before I started drugs the people were like, maybe this person is HIV positive. But
when I started drugs, one woman called me. She said that had it been I died that
time, she would have concluded that I was HIV positive Eh yaah sorry my
daughter. So people may say you are HIV positive then but when you start drugs
and they start seeing you, they say its not true. (Jane, 35 year old female
receptionist).
As demonstrated by the following quote from Halima, a 37 year old unemployed
female, some rich or influential patients paid health workers to bring the ARVs to
their homes for a fee in a form of hidden (Nicodemean) access. This practice is to
prevent them from being identified by the community as being HIV positive.
Halima: yes. Yes. Even some rich menthey dont go to that place oh. They will
attend to see their doctor inside the real hospital. They will now send their own,
either boys or anybody that they can just put money in his hand. They will go and
bring the drugs for them. Instead of them to go there because they know that if they
go there, they will know that this is what is disturbing them. They will just say at the
hospital this thing and see their doctor. They will not like to come to that our centre.

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Researcher: They say that some will just stay in their house and they will bring their
drugs to them.
Halima: Yes. Mostly these rich men and some that arethat are relatives with the
doctors or friends that they know them for long. They dont come to that our centre.
They will just send. They will send it to them.
This strategy allowed them to access their drugs without having to go to the health
care centres with the resultant risk of others knowing about their diagnoses. These
stages are not necessarily linear. A patient may start with anti-retroviral treatment
and stop due to financial or other reasons. S/he may switch to traditional medication
and later switch back to ARVs.
Paradoxical remotivity has been used as a strategy to access treatment. Unlike
other diseases where patients prefer a clinic that is close to where they live, some
patients decide to register at a centre that is far from where they live or work so that
people will not know that they are HIV positive. This strategy is highlighted by
Timothy from the study.
Its only people that are afraid make people know that they are positive. They go
other centres to collect their ARVs. Because I know of some of my people that them
dey Benue and they are coming to collect their ARVs in Abuja. Some they use to
come and sleep over. They no even care to spend the transport money. (Timothy,
36 year old driver)
This strategy was utilised by another participant (Sabrilla). She decided to travel
about 6 hours from where she lives to access ARVs so that people close to her do
not become aware of her HIV diagnosis.
so that time, I was living in Kano. But I came all the way from Kano, to Abuja here
for the (giggles) for the clinic because of that fear, you know being afraid of
stigmatisation because I didnt want anybody and moreover, my profession. Because
I work all the time, all my life in Kano. That was where I worked. That is where I was
trained before I travelled out. So, you know and you know the way they put our clinic
in our this thing. Immediately you step there people will know . But other places, its
not like that. So, I just feel Im not safe to register there or something of that nature. I

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feel more safe here. I registered with National Hospital that time. (Sabrilla, 60 year
old nurse on ARVs).

Some patients do not pass through all the stages. For example, a patient who got
diagnosed at antenatal care may simply have direct access to the ARVs without
trying alternative therapy. These stages also do not depict the ease at which patients
obtain access. Before and around 2004, it was particularly difficult for people to
access treatment. However, when the Nigerian government started providing free
ARVs after 2004, this greatly helped to improve access.

5.5 Conclusion
Past researches have demonstrated how extensive social capital is correlated with
improved health. However not much work has been done to theorise how social
capital may influence health seeking behaviour. The social connection theory derived
from this research could suggest potential solutions to problems with access to
ARVs and provide the base for new investigative studies. It could help establish links
between empirical findings and the sociological environment, thus enhancing logic
for further research. The theory could assist in systematizing concepts and their
relationships into a convenient conceptual scheme. The theory does not aim to
answer all questions or problems on access but will be a useful contribution to the
study of access to ARVs in resource poor settings. It will help point to gaps in
knowledge with regards to socio-cultural factors and access to ARVs.
The social connection theory provides a useful platform for investigating and
planning stigma reduction projects. It suggests that in resource poor settings, people
access HIV treatment following support from social connectors who encourage them
to access services. The theory attempts to bridge the link between the micro process
of access and the macro environment. It reveals the vital role that social connectors
play in influencing access to HIV treatment at the individual, community and
organisational levels. Most of the participants had to confide in someone that they
could trust. This vital interaction with a social connector that is trusted provides an
avenue through which they could have access to treatment.

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There are potential social connectors who could currently connect people to services
who are not being utilised. Without these social connectors it appears as though
some patients will never have access to treatment. The social connectors vary in
terms of their social function. They could be family members, friends, religious
leaders, politicians, or health care workers. Social connectors could vary from very
close confidantes to complete strangers who people trust. The vital component that
is needed is trust that the person will keep the information about their HIV status
confidential. Hence, some people would trust and inform someone who doesnt know
them and avoid telling those close to them to prevent them suffering from the
knowledge of their status.
In order for HIV treatment access rate to increase, these social connectors need to
be targeted and empowered to facilitate access to treatment. For example, the
religious leaders could be provided with training on HIV transmission and treatment
and how members of their congregation can be supported and directed to ARV
centres. Health promotion programmes should be developed not just for the
individual but for the social connectors in the society that can assist the patient in
accessing treatment. This chapter has reviewed findings on social connections and
the ways in which they play an important role in accessing HIV treatment. The social
connection theory has been developed out of these findings. In the next chapter,
broader structural issues and their impact on HIV and access to HIV treatment are
discussed.

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Chapter 6

Structural forces affecting access to ARVs in Nigeria

6.0 Introduction
As discussed in chapter 2, there are limitations in current access theories that do not
take cognisance of the context in which access takes place. Chapters 5 and 6
highlight results that suggest that stigma is still an important barrier to access to HIV
treatment, while social connections are used as a strategy to overcome barriers to
access ARV therapy. The findings from this current chapter are linked to global
cultural and structural issues.
In the literature on HIV, increasing attention and importance has been given to
structural factors and the ways they influence HIV prevention. As Auerbach et al.
(2008) argue, structural issues such as gender inequality and poverty are very
important factors that drive the HIV epidemic. Gupta et al. (2008) suggest that,
structural factors can act as barriers to individually oriented HIV prevention and care
services and the adoption of HIV-preventive behaviours. For example, fear of
HIV/AIDS-related stigma and discrimination discourages people from seeking HIV
counselling and testing. Findings of this research suggest that structural forces also
play a vital role in influencing the health care seeking behaviour of the research
participants including accessing ARV therapy.
For the purpose of this thesis, structural factors are social, cultural, organisational,
economic, legal or policy features in societies that influence health behaviour. They
are structural because they are intangible factors that have an influence on human
behaviour. Spaar et al. (2010), using data from Africa, Asia and South America,
suggest that stigma, discrimination, poverty and unequal gender roles stand as
major barriers to ARV access programmes in resource poor settings.
This chapter focuses on four structural forces which were found to be most relevant
in this study. These structural forces are the economy, politics, gender and
religion/spirituality. With the economy, the financial issues relating to access to HIV
treatment are explored. Issues discussed under political factors include the roles of
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global and local political actors in influencing access to treatment. With gender
issues, the roles and relations of men and women as they access treatment are
highlighted. In exploring religious factors, the influence of religious beliefs and
practices are also analysed and spiritual beliefs of the research participants
explored.

6.1 Organisation of chapter

This chapter is divided into 3 sections. In the first section, structural factors are
introduced. In the second section, structural findings that relate to access to ARVs
and economics, politics, gender and religion are explored. These are linked to the
literature. In the last section, conclusions are made. In this chapter, I argue that
access processes do not occur in a contextual vacuum. They occur within structural
or contextual environments which shape how and when people access HIV
treatment. A change in one aspect of the structural spectrum can affect other areas.
They put pressure on access processes and can inhibit or facilitate access through
complex mechanisms.
Furthermore, structural issues that influence access to HIV treatment are context
specific. What is an important structural factor in one country may be irrelevant or
have lower significance in another. For example, in the United Kingdom, ARV
treatment and laboratory services are provided free of charge as they are funded by
the NHS. In contrast, the Nigerian health system uses a pay for service mechanism.
These funding strategies may have different impacts in different contexts. It may be
easier to access HIV treatment in contexts where all services are free compared to
contexts where some fees need to be paid. However, organisational arrangements
may also affect the ease of access. Even though donor funded ARV programmes in
Nigeria are free, due to the fact that they are often limited to government hospitals,
there are usually large numbers of people attempting to access treatment in small
numbers of public hospitals located in urban areas. This leads to long waiting times.

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6.1.1 Structural factors and HIV

Most of the discussions on structural factors in HIV focus on HIV prevention. For
instance, Sweat and Denision (1995) argue that structural factors have a more
important role to play in the rate of new cases of HIV infection compared to individual
psychological factors. They argue that typical approaches to HIV prevention are
largely based on individual psychology that attempt to motivate people to reduce
high risk behaviour through strategies such as education, counselling and HIV
testing that aim to influence individual psychological processes. However, health
education is not enough to tackle HIV.
Odebiyi (1992) demonstrates that although university students in Nigeria, have high
knowledge about HIV transmission, many of them still had discriminatory attitudes
towards HIV positive persons. They were also not keen to use condoms despite
having the knowledge of its use in prevention. This may be related to the social
construction of promiscuity that goes along with carrying a condom. Oshi et al.
(2005) therefore suggest that policy changes are needed to see that teachers across
all educational sectors are trained to deliver HIV/AIDS communication messages to
students. Currently, teachers do not pass the reproductive health information
because of lack of training and cultural/social inhibitions. Findings from this study
suggest that structural factors do not only play important roles in HIV transmission.
They can also play vital roles in the way people access HIV treatment as well.
Similar findings were observed in an anthropological study conducted by Cataldo
(2008) in Rio de Janeiro, Brazil. It was observed that policies that promote a positive
socio-political environment combined with social mobilisation of citizens contribute to
improved access to HIV treatment. Conversely, using data from Asia and the former
Soviet Union, Wolfe (2007) suggests that the vertical systems of ARV provision and
structural labelling of HIV patients as not being trust worthy or unproductive within
the health care system environment tends to reduce access to treatment.
Other research that reveals the importance of structural factors in access to ARVs,
include a longitudinal, multi-site, randomised control trial conducted in the United
States of America by Kidder et al. (2007). They demonstrate that combining the
structural intervention of providing housing for homeless HIV positive patients with
treatment initiatives, assists in increasing access to ARV therapy. In the same vein,
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using Zimbabwe as a case study, Kasambala (2009) demonstrates that different

structural barriers have a stronger impact in reducing access to ARV therapy than
individualistic factors. He suggests that in order to tackle contextual barriers to ARV
access, there is a need to highlight the moral and human rights necessity for
structural strategies to be implemented in African settings.
Structural issues have a dualistic role. They may assist patients access to treatment
or may stand as barriers. For example, political support has been hailed as one of
the reasons why Uganda made significant progress in reducing its HIV prevalence.
Conversely, the high prevalence rate of HIV in South Africa has been associated
with lack of political support and the insinuation by the health minister that AIDS is
not caused by HIV but by poverty. It is also important to recognise that the structural
issues are not static. For example, findings from this research suggest that before
2004, patients in Nigeria had to pay for the high costs of ARV therapy. Following
pressure from the international community, Nigeria started providing free ARVs in
2004. However, only 10,000 people out of the 500,000 infected could be placed on
the list (HERFON 2007).
Findings from this research suggest that with increased donor funding, access to
ARVs has become easier. However, against the background of the current global
financial crisis, there are fears about the sustainability of using donor funds in the
long term for ARV access programmes (Global Health Policy 2011). Results of this
study also show that structural policies as to the location of ARV centres influence
access to ARVs. Most of the Nigerian government ARV centres are located in the
urban areas, making it difficult for some people to access treatment.
It is difficult to quantify the significance of each of these structural factors. The fluid
or changing nature of structural factors with time also makes it difficult to judge which
factor is more relevant than the other. However, it is easier to interpret how one
structural factor may affect another. This is due to the links between each of the
factors. One factor may affect another in complex ways that are dependent on time,
geographic and political dispensation. For example, political decisions at the global
level may affect foreign cash flow to Nigeria for aid which may be used to improve
access to ARVs in Nigeria. Conversely, a change in political regime at the country
level to military rule may be met by negative reactions at the global level (such as
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stopping financial aid and/or supply of free ARVs). The arguments in this chapter are
based on findings from the research and resonate with findings from similar studies.
In order to analyse structural factors, it is important to consider their theoretical
underpinnings, which are discussed in the next section.

6.3 Economic forces

Of all the structural forces, economic forces appear to be very important. For the
purpose of this thesis, economic factors are a conglomerate of resources that an
individual or group can command to access HIV treatment. Nigeria has the second
largest economy in sub-Saharan Africa, generating 41% of the regions GDP
(Folayan 2004). However, the large GDP does not reflect the inequality that exists
between the poor and rich. Already, a small group of elite millionaires are springing
up in Nigeria. As reported by the Guardian newspaper, while the majority of
Nigerians are living in poverty, this elite group now patronise an exclusive beach in
IIhassa, Lagos called Millionaires playground. The makers of Porsche are hoping to
tap into this market as they have opened their latest showroom in Nigeria (Mark
2012). Farmer (2006) argues that economic inequality within countries is what drives
the spread of the HIV epidemic and other infectious diseases.
The impact of structural factors on female sexual behaviour is highlighted by the
response of Linda, a 27 year old HIV positive female participant. She suggested that
if she is in desperate need of money, she will readily have unprotected sex with a
stranger in order to get money for food and other amenities. In other words, poverty
has the power to drive her to undertake risky sexual behaviour, despite the fact that
she is aware of HIV and the sexual mode of transmission.
Someone like me, Im looking young. If Im walking on the streets, you will not know
that Im HIV positive. If they call memaybe Im just coming from somebody that I
know to give me something and the person says he doesnt have it. And as I was
going, somebody calls me. He says he loves me. I will go. Because I know no how,
he is going to give me something (i.e money). Because at that spot, I was in need of
that money and he calls me, I will give him. Even if he does not use condoms. You
understand. I will look at it (Linda, 27 year old female counsellor)

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Poverty. Because this HIV, poverty is making many people to be HIV positive. That
is what trulybecause I myself, I will say its that poverty that made me to be HIV
positive today. Despite the fact that I dont know when I got it. Because I know the
sufferness that I had. (Linda, 27 year old female counsellor)
Using case studies from Haiti, Farmer (2005) demonstrates that structural issues
such as poverty could have a far more profound effect on health behaviour of people
than the impact of receiving health care information. He coins the term structural
violence to explain how poor people are structurally prone to disease and
detrimental life outcomes. The poor are at an increased risk of contracting HIV and
other infectious diseases. They may be at increased risk due to lack of access to
health information, rural urban migration and consequent transactional sex and peer
pressure to adopt risky sexual lifestyles.
The role of socio economic inequality in negatively affecting health outcomes in the
United Kingdom is similarly demonstrated in the Black report (DHSS 1980) and
corroborated by the Marmot review (Marmot 2010). The reports find that poor people
are at a greater risk of having poor health than people from privileged backgrounds.
These reports are not HIV specific and focus on chronic non-infectious diseases
primarily in the UK. However, the evidence suggests that being poor places people
at greater risk of poor health. Among other factors, poverty may also influence health
seeking behaviour and access to ARVs.
At the macro level, the failure of the Nigerian government to allocate adequate
funding to ARV therapy for the infected population and the inability of the majority of
those infected to command economic resources to access HIV treatment, all have an
impact on the accessibility of ARVs. This is against the background of multiple
competing priorities.
For example, it may be more cost effective to allocate funding to combat malaria
since malaria kills more people than HIV/AIDS in Nigeria annually. Nigeria has
57,506,000 cases of malaria per annum. With 225,424 deaths annually, Nigeria has
the largest number of Malaria deaths world-wide (Roll back malaria 2011). Malaria is
also curable and has a better prognosis than HIV. There is no single strategy for
improving and maintaining access to HIV treatment. It will require strong health care
systems and innovative multi-disciplinary approaches, which take cognisance of the
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local context. These programmes need strong structural theoretical underpinnings to

guide the strategies for them to be effective.

6.3.3 Poverty and access to ARVs

According to the United States Central Investigation Agency (CIA 2011), oil-rich
Nigeria, long hobbled by political instability, corruption, inadequate infrastructure,
and poor macroeconomic management, has undertaken several reforms over the
past decade. Indeed, beginning from 1982, and through 1984, Nigeria has had
negative trends in economic growth as evidenced by the decline in the gross
domestic product (GDP) (0.35% in 1982, 5.18% in 1984 and -17.19% in 2009).
Nigerias poor economic picture is evidenced by persistent current account and
budget deficits, a huge backlog of uncompleted projects, especially in the public
sector, factory closures, large-scale retrenchment, acute shortages of essential
commodities and rising inflation (NCEMA 1995). The inflation rate in Nigeria is
currently 11.5%. 70% of the population live below the poverty line (less than a dollar
a day). Nigerias revenue for 2009 was $13.68 billion, while its expenditure was:
$21.83 billion (leaving a deficit of $8.15 billion) (CIA 2010).
The result of dependency and demise of manufacturing capacity of developing
countries is a poor economic outlook. Lack of access to factors of production such as
land, capital and human resources also contributes to poverty. At the global level,
contributing to the national poverty is the unfavourable terms of trade in the global
market. Room (1999) suggests that globalisation predicated on market led growth
runs the risk of increasing social exclusion as poor people are not supported by
advantaged groups. These issues could also occur at country level as poor countries
are not supported adequately to develop. However, it is naive to conclude that the
current poor economic situation is due solely to global factors. Local factors such as
governance issues and government priorities also have a role to play.

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The degree of access to ARVs depends on the macro economy. With a poor
economy, the capacity for the Nigerian government and private citizens to afford
ARV therapy is severely limited. Inability to provide ARVs to HIV positive persons
may also affect the economy negatively as patients are too ill to engage in
economically productive activity (POLICY 2004). The macro economy is also linked
to the micro economy. With a poor macroeconomic outlook, there is a corresponding
reduced capacity of individual citizens to afford ARVs at the microeconomic level
(Folayan 2004). The person with little or no education finds it difficult to get a
sufficiently high paying job and remains in poverty.
As Booysen (2004) demonstrates, using data from South Africa, poverty makes
people more vulnerable to contracting HIV infection as the individual may engage in
high risk behaviour such as transactional sex. The person who is HIV positive and is
unable to afford treatment loses income and contributes to reduction of the nations
economic productivity. The presence of untreated sexually transmitted disease (due
to ignorance or poverty) also contributes to the spread of HIV (UNAIDS 2009).
Conversely, as Hilhorst et al. (2006) demonstrate using epidemiological data from
rural areas in Benue state in Nigeria, HIV/AIDS exacerbates poverty. They argue
that HIV worsens poverty by contributing to loss of labour/livelihoods and leading to
increase in medical and funeral costs. Thus, the vicious cycle of lack of education,
poverty and HIV infection is established. The link between poverty and HIV is
demonstrated by the following quote from one of the research interviewees:
Its not a poor man sickness? If you are poor, youll just die for nothing. You
understand. (Linda, 27 year old female counsellor)
Findings from this study suggest that in order to access treatment, the patient has to
take

into

account,

microeconomic

considerations

such

as

the

cost

of

accommodation, loss of income from absence from work, transportation costs,

consultation costs and the social (stigma) cost of being seen accessing treatment
from the ARV centre. The patient has to consider the opportunity costs of taking time
out of other competing commitments to access the ARVs. Structural interventions
that could assist in improving access could include provision of financial support for
patients living with HIV/AIDS. As Mairi suggests, these incidental costs can serve as
barriers to accessing ARV therapy.
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Yes, I feel more centres should be there for eh eh peopleto enable people to
access care treatment and support too. Because at times you will see that in some
community, community eh you will see that they have to travel far to accessmaybe
they have only primary health care in their vicinity and they dont have access to
drugs. They will have to travel to somewhere else to go and access drugs and that
too also is a barrier to their consumption of drugs. Some of them will feel that they
dont have transportationmoney to transport themselves to the place and some will
feel the place is far and they will not be able to go. (Mairi, 30 year old hair dresser)
Taylor, a 40 year old paramilitary officer, suggests that it was difficult to access the
ARVs when patients had to pay for the drugs. However, as Austin from the study
suggests, when the drugs became free, it was easier for patients to access their HIV
treatment.
Researcher: did you experience any barrier at all to get the drugs?
Taylor: So, following it was the cost. You know I started with money but all of a
sudden it became free. So if I can only get my transport to the placeIf I can
transport myself, I will just get it free. No much barrier and it doesnt take much time.
(Taylor, 40 year old paramilitary officer)
Yes. It is easier now. You know before it was expensive, and nobody was ready to
go for it. Even if you had it you will just sit down, you will just wait until when you die
because you will not be able to buy the drugs. So now that the drugs are now given
free, you have more people coming out. (Austin, 56 year old engineer)
Timothy, a 36 year old driver, stopped his ARV therapy for 2 years because he could
not afford to pay for the drugs. He later resumed taking the drugs when ARV therapy
became free in Nigeria.
When I went to the hospital, they test me. They asked me to come next week. I went
the next week. I didnt see the CD4 count. So that asked me if I have money. So I
asked my mum. She said of course that she has money. So I went and told them
that I have the money. So when I go to the doctor they wrote and sent me to the
pharmacy. Me, I came and paid the 7000 and collected the treatmentI started in
2004 but I come break because of money. I come start in 2006.(Timothy).

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Similarly, Jimmy, a 37 year old unemployed graduate, had to stop his therapy
temporarily when he ran out of money to pay for the ARVs.
In the initial stage, I told you that it was very difficult. I had to buy because there was
no easy access. Especially in Benue state where I was. We had to buy at the rate of
em 6000. And even the TB I did not know that the drug programme was going on. So
I started paying a lot of money and its a private hospital. So with my condition, the
wholethe little money that I had on was exhausted and the period I was taken care
up to a point because it was as if it was boiling. So I was able to access the drugs
for 2 months, and thereafter there was no money. So Thats was when I had the
courage to let me come back to Abuja. Although by then, they were paying. if you
were on government list it was difficult. Youll be paying N1000. (Jimmy, 37 year old
unemployed graduate)
Two of the participants in this research recounted how HIV positive patients went on
to sell their ARVs to patients who are not yet on the government list. They did so that
they could get money for food and other necessities. One of the participants
(Sabrilla) was also able to buy some ARVs at a reduced price when the hospital ran
out of stock from patients who collect and sell.
I will see some people. Maybe they have collected and they are selling. So, I will
buy for like 4000...4,000, 5000 Yes, they will want to sell, to use the money to buy
food. Ehenso, I will be able to get the ones that will take me for up to two to three
months. So, if I buy, if I go backSo, this is how I started (Sabrilla, 60 year old
nurse).
Em, its because the time Im living at Wuse zone 4, thats where I started. From Gidi
foundation to national hospital. So, they told us that we should remain where we are
collecting our drugs because many people collect at that time and they are selling
it.They are not using it. So, they said they should not see your name in 2 places. So,
that is why I maintained national hospital. Not that Im scared of maybe Asokoro,
Abacha barracksnothing like that. (Happiness, 38 year old business woman).

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A similar practice occurred in Larkan et al. (2010)s study in which some of the
participants of their study, told stories of how ARVs were being sold by registered
ARV patients to patients not registered with the health care system (the so called off
label trading).
These suggest that simply providing ARVs may be counter productive if the micro
economic context of the individual patient is not taken into consideration. It is not
enough to provide medication for the patient without taking into consideration his/her
socio-economic condition. Structural interventions within the health care system that
may assist in improving access include the provision of financial assistance to HIV
positive patients to cover their expenses.
In Bayelsa State in Nigeria, one of the participants reported increased uptake of
ARVs when the governor of the state announced that HIV positive patients who
access their ARVs will be provided with financial support to cover nutrition and travel
expenses.
When the governor of Bayelsa state provided financial support for patients living with
HIV/AIDS in Bayelsa, this motivated people to go for treatment and increased access
(Viktor, 29 year old social worker/HIV activist)
they had a very small number of people accessing ARVs. A lot of people were
denying because of stigma, discrimination and all that. But when he announced that
theres going to be a N10,000 monthly nutritional support allowance for every person
living with HIV, who come to access treatment in the state government hospital, so
while seeing your doctor and while taking your ARVs, you feel you have access to
your nutritional allowance, which is N10,000. It was a very good turn over and a very
good impact because a lot of people came out and so many people got tested along
the line. (Viktor, 29 year old social worker/HIV activist)

The participants suggest that people who had to travel far to access treatment were
often able to stay over at a relatives house (saving accommodation costs). However,
it is not sustainable for continuous access when the patient does not want to disclose
that s/he is taking ARVs.

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6.4 Political forces

Part of the complex milieu of factors contributing to Nigerias economic problems is
lack of political leadership and good governance. Per capita income is low which
reduces the purchasing power of citizens. The short term tenure of 4 years
encourages politicians in power to try and make as much money as possible for
themselves before their tenure runs out. For the economic situation to improve,
strong leadership and good governance is essential. Issues such as corruption and
bad governance affect the economy negatively (Asante 1986; Asobe 1980; Smith
2001).
The socio-political environment puts pressures on social networks to impede or
facilitate access. For example, some of the patients interviewed suggested that they
had started ARV treatment but had to stop for months because they could not afford
to pay for drug treatment. However, following pressure from international donor
agencies and the provision of funding, drugs and delivery mechanisms, some of the
patients later restarted. As Seckingelgin (2008) suggests, these policies are
occasionally put on the national agenda following pressure from global actors (social
connectors).

6.4.1 Political Actors and Global Forces

The role of local politics in the allocation of funding and resources cannot be under
estimated. Politics is a structural issue that can influence how resources are
allocated for health programmes. Under the leadership of President Olusegun
Obasanjo, much of the foreign debt of Nigeria was cleared and the Government
public funded programme began to provide free ARVs to patients living with
HIV/AIDS in 2004. Under the new leadership of President Musa Yaruadua in 2007, a
lot of the participants complained that the level of financial support that they have
received from the government had reduced. This may also be related to the global
financial recession at the time.
The inability of the Nigerian government to provide resources and an environment
through which drugs can be produced locally undermines the long term prospects of
continued access to ARVs. With the global financial crisis of the early 21st century,
there are fears for the long term health of patients who are already taking ARVs if the
international donors stop providing funding. At a recent meeting of in New York, the
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GFATM third voluntary replenishment group suggested that there may not be
enough money to replenish the fund in the future (Global Health Policy 2011).
The international donor agencies wield a lot of influence in the provision of ARVs
(Oturu 2006). Without their role, the ARVs may not have been as accessible as they
are today in Nigeria. With low pharmaceutical manufacturing ability, Nigeria is
dependent on ARV supply from pharmaceutical companies based in developed
countries. The ARVs are often patented and their production and exportation
governed by the Trade-Related Intellectual Property Rights (TRIPS) agreement of
the World Trade Organisation (UNDP 2006).
The Trade-Related Intellectual Property Rights may provide a structural barrier to
affordable ARVs in developing countries. The TRIPS Agreement extends product
and process patents to the pharmaceutical industry. This contributes to increase in
the cost of patented drugs, and therefore limits developing countries access to them
(UNDP 2006). TRIPS allow pharmaceutical companies that produce ARVs to
monopolize production of new ARVs for about 20 years. There are fears about the
future sustainability of the Indian companies that produce ARVs because India
passed patenting laws in 2006 stipulating that any medication produced in India after
that date, had to comply with international patenting laws (Bermudez 2010).
Pharmaceutical companies often protect their medicines with a patent. Any other
company or country that wants to produce ARVs needs to get permission from the
pharmaceutical company through the purchase of a licence. The licence fees are to
recoup research and development costs and increase profits for their executive
members, investors and shareholders. The TRIPS are negotiated by members of the
World Trade Organisation. As Ritzer (2009) argues, the negotiations tend to favour
developed countries where the ideas tend to emanate from. Thus, the intellectual
property processes may contribute to limiting access to ARVs as poor countries are
dependent on richer countries for the production of the ARVs. (UNDP 2006).
Even though the participants of this research did not understand the global
negotiations and dynamics that came into play for them to access treatment, they
were aware that access was only available due to the funds provided by international
donor agencies. Although DFID, the GFATM and other donor agencies provide
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funding for ARV access, PEPFAR appears to be the one most recognised by the
participants. This may be due to better marketing by the US government. One
interviewee expressed this through the following quote:
..Its by the American people. I know its by the American people. Presidential
relief for African countries Yes. Its an American project that supports HIV activities
in African countries. They supply drugs and other preventive activities. (John, 48
year old military officer)
The funding does not come without strings attached as there are conditionalities.
With PEPFAR funds for example, the drugs initially had to be procured from
pharmaceutical companies based in the United States of America with their higher
prices rather than cheaper generics. There were also moral conditions that applied.
These included advocating for abstinence from extra marital sex and the preclusion
of PEPFAR funds being used for or to promote abortions (Dietrich 2007).
Indias domestic pharmaceutical industry is a major source of affordable antiretroviral
medicines. According to UNDP, 30% of all generic drugs in developing countries are
supplied by India (UNDP 2006). Two developments within the World Trade
Organization (WTO) have played a role in potentially improving access to generic
ARVs. These are the 2001 Doha Declaration on TRIPs and Public Health and the
30 August Decision of the WTO General Council in 2003. They allow flexibilities
within the TRIPS agreement that allows low income countries to invoke compulsory
licences or certificates of notification for producing the ARVs locally for public health
reasons.
The flexibilities allow India to export the ARVs via a compulsory license if the product
is patented in the importing country or through a notification if the product has not
been patented in the importing country. However, these agreements have had a
limited effect, largely because, few developing countries (including Nigeria) are
making use of the loopholes or flexibilities contained in the TRIPS Agreement
because they either do not have any ARV pharmaceutical industry or do not have a
sufficiently large manufacturing capacity to satisfy the local demand for ARVs (UNDP
2006; Bermudez 2010). However, countries like South Africa have used legal means
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to enforce the TRIPS flexibilities, while Brazil has used compulsory licensing as
leverage to negotiate with pharmaceutical companies for the local production of
ARVs (UNDP 2006; Satyanarayana and Srivastava).
Satyanarayana and Srivastava (2010) suggest that patent pooling is a useful
strategy that could be used by drug companies that supply ARVs in India. This is
also applicable to Nigeria and other African countries. With patent pooling, different
ARV production companies can pool resources and have a common patent. This
may

drastically

reduce

individual

research

and

development

costs

per

pharmaceutical company and reduce the cost of the drugs. However, the common
patent pool will also mean that profits and/or royalties may need to be shared
between different companies.
As South Africa and India have demonstrated, patents are territorial. If a patent is
registered in the United States of America, for example, it is not legally recognised
as a patent in the United Kingdom or in Nigeria. A separate patent needs to be filed.
Therefore, collaborative arrangements with Asian countries and other global actors
may assist in the local production of ARVs.

6.4.2 Global Actors

In some cases, international donor agencies act as global social connectors by
mediating between the pharmaceutical companies that produce drugs and the
developing countries that need drugs. In other words, they provide the funding for
the rolling out of ARVs. Global social connectors include philanthropic foundations
(such as the Bill and Melinda Gates Foundation), international non-governmental
organisations and international donor agencies. These social connectors have been
instrumental in negotiating with pharmaceutical companies to donate free ARVs to
African countries. They are occasionally involved in mobilising financial resources
and technical support for the supply of ARVs (UNAIDS 2006).
International donor agencies are diverse in their functions and the level of power and
their policy agendas (See table 9). Fustukian (2005) has developed a framework that
examines the strategic positioning and direction of different donor agencies.
Although it may be an oversimplification that is bound to change with contextual
pressures (such as politics, wars and global financial crises), it provides an overview
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of how donor agencies are important in influencing structural change in developing

countries. Donors with structuralist agenda tend to work through government
institutions. For example, WHO mainly works through National Ministries of Health.
Socialist donor agencies tend to work through civil organisations and nongovernmental organisations while neo liberal donor agencies tend to work with civil
organisations and the private sector.
Donors include bilateral organisations such as the UK Department for International
Development and multilateral organisations such as the World Health Organisation.
Apart from donor agencies, global alliances of International non-governmental
organisations and activists have been instrumental in putting access to ARVs on the
policy agenda and in lobbying governments and pharmaceutical companies to make
the drugs more accessible.
Local activists were also involved in Nigeria lobbying and advocating for free ARVs
for people living with HIV. However, they might not have been successful without the
added pressure from global social connectors. The following quotes by an HIV
positive male patient interviewed in this research provides an example as to the
importance of international donor agencies in making ARVs more accessible.
Initially, there was difficulty. The difficulty was because we had to pay. We had to
pay. Even when the government own came before PEPFAR we were placed on a
waiting list. So many of usWe were expecting then. We had to keep going to the
hospital to find out if we had been enlisted. Within that period, so many people
because of the waiting..stress from waiting. so many of us gave up. Some died.
(John, 48 year old military officer)
Although the donor agencies have moved in to help provide ARVs, it is important
that they have a long term strategy. The international donor agencies also need the
cooperation and technical assistance of local political structures for their strategies to
be effective. As one of the participants suggested, local political decisions determine
direction of flow for funds.

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Table 9 Fustukians (2005) Donor Strategic Framework for Global Actors

World Health
Organization WHO

United Kingdoms
Department for
International
Development DFID

United Stations Agency for

International Development
USAID/PEPFAR

Development
Perspective

Structuralist

Socialist

Neo-liberal

Focus

Governments

Social
groups/communities

Private sector, nongovernmental organizations

Goals

Equalized outcomes

Pro-poor, provulnerable groups

Freedom, choice

Means of
distribution

Egalitarian

Redistribution

Free market

State Involvement

`Maximalist

Partialist

Minimalist

Health care
Providers

Works through state

structures

Initially worked mainly

with civil society, but
policies now favour
working within state
structures

NGOs, civil society, private

hospitals and the state

Access to health
and social care

Right of citizenship, not

dependent on individual
income or wealth

Requires contribution
from the community

Ability to pay, require some

contribution from the
community

Sustainability

Meets needs of present

without compromising
the ability of future
generation to meet their
own needs

Meets the need of the

present and provides
foundation for future
generation to meet their
own needs

Fast, of high quality, meets

the need of the present but
may not sustainable when
funds are not forthcoming

6.4.3 Local politics and access to ARVs

With dependency on donor aid and loans for ARV access, there is a feeling among
the participants that the Nigerian government will not be able or willing to take up
funding of treatment if donor agencies stop helping. There are also studies that have
shown a link between agenda setting by politicians in power and levels of allocation
of resources for health or other priorities (Segall 1983, Andersson and Marks 1989).

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As John (interviewee in study) argues, it appears that the Nigerian government relies
heavily on donor funding for the public ARV access programmes. The Nigerian
government appears to be reluctant to release state funds for ARV access
programmes. This may be due to reallocation of funds to other health priorities such
as malaria.
The funding is donor driven. PEPFAR is having a percentage. WorldWhat do you
call it? Global fund is taking another percentage. We have international organisations
working on HIV and AIDS that are a lot of this thing...How much? Ill tell you an
example. FCT last year could not get Kobo from the World Bank. And that meant
HIV activities were almost grounded to zero apart from these donor organisations
because the FCT administration could not give a counterpart funding for how much?
Just 10% of what World Bank wanted to give. So assuming World Bank wanted to
give 360,000 what they are asking for is 10% which is 36 million. But FCT could not
give 10 million. (John, 48 year old military officer)
One Politics... was you see? like the Nigerian factor the money voted by
government for ARVs is so minute that if we had relied on politics we would still be
dying. Secondly, politicians see HIV funds as quick money for them to eat. You see?
(John, 48 year old military officer).
Local politics has an impact on HIV activities. The level of sympathy of the ruling
politicians determines if funding is released for HIV activities. For example, as
evidenced from the following quotes from research interviewees, during the
Obasanjo presidential regime, it was suggested that the Abuja government (FCT)
provided funding for HIV preventive and support activities. However, the following
quotes by interviewees suggest that with the inauguration of a new government,
social support services were stopped as HIV was tackled as a health matter instead
of a social issue.
Yes. Because during Obasanjo, there were doing a lot ofmost especially women
thatyou know now, women deliver. They will not be getting milk in the hospital.
During Obasanjo, we used to get milk. Constant milk. They will be giving women milk
for the half of the year. For 6 months! You know, by then the child has started
growing. You will start adding. But when you start buying by then you will be adding
the child with akam (pap). So, you will not spend much but during the delivery you
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know you will spend a lot. Obasanjo, during his time, we used to get a lot of help
from him. Milk, access a lot and any time you go they will give you milk. But now,
there is nothing like that. Women are suffering. You dont see anything. When you go
today, they will say come back. If you go tomorrow, they will say come back.
(Halima, 37 year old unemployed female)
I used to go CACA from Kaduwa. Emm. There, before they used to care for us and
support. They used to give us plenty food and transport. But as for now, nothing day.
Them say FACA did not give them money. So, we are just going there. (Marcella, 32
year old petty trader)
That is it. And let me tell you, I dont know about this year. Since the creation of
(new) HIV FCT, administration has not made HIV as a line budget activity. It has
always been a health related matter. So whatever Ministry of Health decides to I
mean secretariat decides to give the local government is what they get. (John, 48
year old military officer)
So now

the problem we are facing. We are advocating for that. But now its now

unfortunate that I dont know what is happening. There is no funding again. (Jimmy,
37 year old unemployed male)
Anabel, a 29 year old seamstress also complained that she was no longer receiving
nutritional support from the FCT government Action Committee on AIDS (FACA).
Anabel: We go to FACA, they give us foodfoodstuff, multivitamins, riceMany
things. Just foodstuffs.
Researcher: Are they still functioning?
Anabel: FACA is not functioning now. I dont know why.
The inability of government to provide enough funding for health may reflect the low
economic priority of government and the value placed on health compared to other
competing priorities. The percentage of the Nigerian budget earmarked for health is
about 5% (Nigeria Health Journal 2010). However, it is estimated that Nigeria will
need about 15% of the total budget allocated to health in order to meet the
millennium development goals that relate to health. This in contrast with the United
States of America and the United Kingdom which spend 19.5% and 16.5% of their
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budgets respectively, on health (Nigerian Health Journal 2010). This may reflect the
priority of the governments.
In an informal discussion with a health worker, it was rumoured that some of the
ARVs were diverted to the government house in one of the states instead of the
health care centres, where they are sold. The implication of this is that people of
lower socio-economic status may be intimidated going to the government house to
access treatment. However, this type of informal trading has been reported to have
stopped.
Similarly, Larkan et al. (2010 ) in an ethnographic study carried out in South Africa,
suggest that there were also rumours of an ARV (Efavirenz) being diverted from the
healthcare system and being used as a recreational drug. However, these rumours
were judged by the researchers to be embedded in the social imagination of the
health care providers because there was no hard evidence of this practice taking
place. Nevertheless, one of the female participants in their study (Mary) admitted in a
story that her boyfriend once smoked her ARV pills (pg.70-71). As they argue, a
potential crisis may loom if health workers deny patients access to ARVs based on
psychological tests that determine risk of engaging in off label trading of ARVs or
using them for recreational purposes.
While in Nigeria undertaking this study, approval was given for diversion of funding
from the health budget to renovate the highway from Abuja International airport to
the city centre (which wealthier people will use to go to the airport). It may be
important not only to increase the health budget but to strategically ensure that the
funds are effectively used to improve health using evidence based research. It is
also important to tackle HIV as not only a medical issue but also as a social issue. It
appears that the National Action Committee on AIDS in Nigeria is funded mainly
from the GFATM without much contribution from the Nigerian government (NACA
2011). The breakdown of the Nigeria health budget, by the budget office does not
show any specific allocation for HIV activities (Budget Office 2011). As participants in
this study suggest, it may be important for the Nigerian government to develop long
term funding strategies for HIV activities, so that if external donor funding stops, the
country will be able to cope.

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As argued above, poor governance and poverty appear to play a role in impeding
access to ARV therapy. Economic factors are vital for access to ARV therapy.
However, there are other factors that affect the access either directly or through
effects on the economy. Stigma, politics and other social factors are intertwined in a
complex milieu and influence access in wide ranging ways. Even though Nigeria is a
resource rich country, the capacity to convert natural resources to useful refined
products is lacking. Inequality in the distribution of wealth creates an environment
where the spread of HIV could thrive and where access to ARVs is difficult. Even
within the poor population, other forms of sub-inequalities exist that further
undermine the capacity of patients to access treatment. Gender inequality also
stands out in this study as a subtle factor that affects HIV prevention and treatment
initiatives.
For the purpose of this thesis, gender inequality means women are less able to
command resources and assets compared to men in order to safeguard their health
(Doyal 2001; Gupta 2002). Hence, gender issues pose a linked problem to access to
ARVs as some women may need to depend on men for financial resources and
permission in order to access treatment. Similarly, Sweetman (2001) cites that
gender stereotypes of submissive females and powerful males may restrict female
access to health information and encourage the spread of HIV and other Sexually
transmitted diseases.

6.5 Gender and access to ARVs

For the purpose of this thesis, gender is defined as the roles and relations between
men and women as defined by society. This is in contrast to sex that depicts
biological features of males and females. It could be argued that gender is a
structural factor as gender norms in the society have significant consequences on
capacity of women to mobilise resources that are needed to access HIV treatment.
Information on gendered cultural practices that increases the risk of HIV
transmission has already been discussed in chapter 1 of this thesis. In this section, I
focus largely on the impact that gender has on access to ARV therapy.

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6.5.1 Socialist feminism and access to ARVs

Socialist feminism links gender inequality with economic inequality. Doyal (2001) a
prominent socialist feminist, using analysis of gender literature, demonstrates that
gender inequality in income and wealth make women more prone to being poor and
consequently more vulnerable to disease. Approaching the debate from a global
perspective, Doyal (2001) argues that in the past, women were placed at a greater
risk of acquiring HIV than men. Women are also unable to negotiate condom use as
they are economically disadvantaged (Oyediran et al. 2010). This disadvantage
enables some social conditions that facilitate the spread of HIV.
Apart from the influence of gender in making women prone to HIV infection, gender
may also affect the way women access treatment. There is well documented
evidence of barriers that make it difficult for women to access treatment. Inadequate
access to financial resources and the need to obtain permission from male partners
can impede womens ability to access HIV treatment (Doyal 2001, UNAIDS 2009).
Women in rural areas will find it difficult to access treatment if they need financial
support from their husbands every time they need to travel and access treatment.
Doyal (2001) argues that in the United Kingdom, prior to the establishment of the
NHS, financial barriers and gender based discrimination made access to health care
treatment more difficult for women compared with men. However the removal of
financial barriers made access to health care more accessible for women.
Findings from this research suggest that a similar trend occurs in terms of access to
ARVs in Nigeria. When HIV positive patients had to pay for ARVs, men appeared to
have easier access than women. However, with the provision of free ARVs by the
Nigerian government, the findings suggest that women were more likely to access
treatment than men for a number of reasons. Firstly, women are offered the choice
of doing an HIV test during antenatal care (ANC).
You see, when you go to hospitals, you see more of the womenBut the women do
(access their ARVs). The women do because even if they are pregnant and they go
to the clinic, they must be tested. And they will tell you that you are HIV positive so
that they take care of your baby (Austin, 56 year old engineer).

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This is in contrast to most of the male participants who only went for an HIV test as a
last resort when they were ill and other forms of alternative therapy had failed. This
widespread provision of HIV tests to women by health care workers when they are
pregnant contributes to an increase in the number of women knowing their HIV
status. Consequently, this increases the chances of their accessing treatment.
Secondly, a lot of donor agencies support Prevention of Mother to Child
Transmission of HIV (PMCT) programmes. In a fashion similar to the widespread
recommendation of HIV testing during antenatal care, pregnant women are tested for
HIV and placed on treatment if found to be positive. As evidenced in the following
quotes from interviewees, these programmes are quite effective in improving access
as the organisations that provide the tests also offer ARVs.
No. Men dont like going for treatment oh! Most of them dont even want to go for
test. The only thing that is there is the women. And what made the women to go for
the test is maybe if they are pregnant and they went for antenatal clinic. Definitely,
they must ask them to do HIV test. So, I think from there they go home and invite the
husband. The husband may not come. The husband may not like to come for the
test. So men dont like to go for the test. That is why I say that women are more
vulnerable than men. Because in the midst of 20 women, you will find only 2, 3 men
in that place. (Shekira, 19 year old student)
A study conducted in Tanzania suggests that depending on the nature of the PMCT
programme, some patients may only access enough drugs to prevent mother to child
transmission and are not supported in continuing treatment or caring for the baby
after delivery. Using the medicines in this manner can potentially damage womens
well-being by leading to drug resistance (USAID 2010).
In contrast, doctors in most primary healthcare centres in Nigeria recommend the
HIV test during antenatal care. They also refer the patient to a tertiary health care
centre that provides ARVs. They may experience initial difficulty in accessing
treatment. However, in principle when they do start, they are able to continue
accessing drugs free of charge for life. This access to ARV treatment after
pregnancy makes access to ARVs through ANC route more attractive. Consequently
more women in this study had access to ARVs through ANC than through PMCT.

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Msellati (2009), drawing on 15 years experience in the HIV field in West Africa and
an extensive literature review, suggests that PMCT programmes need to mainstream
anti-stigmatisation and confidentiality strategies in order to increase the number of
females accessing ARVs through this route. I suggest that in order to be effective
and gather public support, PMCT programmes will need to have a strong referral
system that allows women to continue treatment even after the birth of the child.
Women were also found to care more about their health than men. Social gender
norms reflect the passion women have for caring for their families. A Nigerian
womans status in society is often based on her ability to care for her children and
other members of her family. Participants in this study suggested that men cared
less about their health or their children compared to women. Instead, mens status is
associated with their culturally constructed masculinity in society which is in turn
predicated on their ability to cater for the financial wellbeing of their families even if it
means sacrificing their health. This is evidenced by the following quote from Linda, a
27 year old female counsellor:
Linda: Because women. Ah! Women they too like life (giggles)
Researcher: (laughs)
Linda: Life dey sweet them. No be small. No lets be sincere. We like living life. You
know. That death. We dont want to hear it. Out of 10 men, you may get 7 that will
say make death come now. But womanthey will tell you no. They no want die
now. We are still looking for money. So we, we go for treatment. Yeah
Last but not least, female participants in this study suggest that they feared what will
happen to their children if they died of AIDS because they refused to access
treatment. Consequently, most of the patients in support groups and/or who access
ARVs openly are women. This social connection of women in support groups and
women support groups has a multiplier effect in increasing self esteem and
bolstering women to access treatment.
However, there are some women who refuse to access treatment because of the risk
associated with meeting someone they know at the ARV centre and the resultant
stigma. This is demonstrated by one of the female participants. She refused to

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access ARV therapy in the area where she lived and had family/friends because of
fear of meeting someone she knows.
because of that fear, you know being afraid of stigmatisation because I didnt
want anybody and moreover, my profession (to know) because I work all the time,
all my life in Kano. That was where I worked. That is where I was trained before I
travelled out. So, you know and you know the way they put our clinic. Immediately
you step there people will know (Sabrilla, 60 year old nurse).
Based on these motivating factors listed in the previous section, women in this study
accessed HIV treatment more openly than men. In contrast, men tended to be afraid
of what would happen if they met a friend or someone they knew as they were
accessing treatment. The findings from this study are consistent with research
results described by Bila and Egrot (2009) in Burkina Faso. Using an anthropological
research design they found that men were less likely to access ARV treatment than
women in order not to be seen as weak by society. The findings of this study also
concur with a recent similar study conducted in Thailand by Le Coeur et al (2009).
They found that proportionately more women had access to HIV treatment than men
(even though more men were infected with HIV). They attributed this unexpected
result to women being introduced to the test during antenatal care and/or following
the death of a child or spouse. Interviewees from Nigeria back this assertion.
Women are more than the men oh! I think the women, they prefer to access
treatment. (Raphael).
As in this study, the male participants in the Thailand study only had the HIV test
when they fell ill. Seeing someone they know at the ARV centre opens up the
possibility of experiencing stigma by the society. This assertion is also supported by
research done by Natrass (2008) in South Africa. Natrass (2008), a feminist
economist, using regression analysis of data from the South African Demographic
and Health Survey demonstrates that men in general access ARV centres less
readily than women. She cites the masculinity factor, which encompasses gender
norms and depicts a man accessing ARVs as being weak. The hurt to the male ego
is suggested as the main reason for men not accessing ARV treatment.

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Hankins (2008) also demonstrates, following a review of global trends from UNAIDS,
that women are more likely to access treatment than men. However, structural
determinants such as food insufficiency, poverty, decreased access to credit and
inequitable inheritance practices complement gender norms that increase risk of
women acquiring HIV infection.

6.5.2 Masculinities matter

Issues relating to stigma and fear of being ridiculed or discriminated against
contribute to reducing mens access to ARV therapy. Connell (2002) suggests that
hegemonic masculinity norms in society foster the character of real men as being
risk takers who are fearless, strong and have multiple sexual partners. An informal
conversation with an African HIV positive person whose father died of HIV after
refusing to take ARVs suggests that men may refuse to take the ARVs as it may give
the impression of them being weak. He recounted how his father preferred to die of
HIV than experience the shame and perceived weakness accessing the ARV
therapy.
You see, the mennot all the men are ready to go out to access their drugsNot
all. Some of them, just as I have said they have stigmatised themselves. You know?
. They dont want somebody to know or somebody to see that they have gone to
STI clinic. (Austin, 56 year old engineer).
As one of the interviewees in this study suggests, some men feel that they can beat
the infection with their own power and dont need to resort to taking drugs.
Because some men, they think what is in their mind say they have powerthey
have ability to suppressthe sickness cannot affect them. They always boastthis
thing cannot affect them. If they see some capsule and any other treatment, they
advise them. They just take it say they are killing the HIV. But women they come
direct. Like women are more than the men in the clinic that I see. (Saulle, 43 year
old male driver)
However, not much research work has focused on barriers that make it difficult for
men to access treatment. This kind of research is vital. While a lot of gender
programmes have looked at how women can be empowered to access treatment, it
could be argued that similar programmes are lacking for men. Most programmes are
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based on feminist agendas using gender frameworks advocated by feminists such

as Caroline Moser (1993). This move is largely due to the unequal access women
have to land, property and other assets for cultural reasons. As Gupta (2002) argues
Women are limited in their ability to control (heterosexual) interactions because of
their low economic and social status and because of the power that men have over
women's sexuality.
Even when women in Nigeria have access to money, their societal value is reduced
if they are not married or linked with a successful man. This cultural norm contributes
to ensuring that women continually remain dependent on men for their social value
irrespective of how much money they earn (Smith 2007, Smith and Mwakwe 2010).
As Kabeer (1999) argues, planning programmes for women without taking gender
relations between men and women into consideration could be counterproductive.
Gender services for women will be more effective if men are included as well
(Connell 2002). Men can also facilitate or hinder their female partners ability to
access treatment. However, when both partners are infected, women are usually
blamed for bringing HIV into the family. Most of the HIV positive female participants
suggested that their husbands were reluctant to go for an HIV test after they
informed them of their HIV status. This is demonstrated in the following quote:
Women like going to the hospital. Like from experience, one of theI have aI have
a friend that she tested positive. As she is going, she has been disturbing her
husband to go for the treatmentfor the test. The man said no. He refused. And I
know how it take me when I knew my status. How it took me to convince my
husband to go for his own test. And after his test, they advised him to be coming
regularly to doto be tested in every threesix six months. He doesnt come. I try to
make sure he comes. He doesnt come. If he comes once, it will take another year
before you see him again. (Anabel, 29 year old female seamstress)
Adeleye and Chiwuzie (2007) demonstrate that men are often neglected in health
programmes with preference being given to women. Consequently men often appear
not to care about the plight of women. Rather than trying to force men to relinquish
power, it may be easier to involve men in the planning of sexual and reproductive
health care programmes. Cleaver (2001) suggests that women may be able to
receive more power when men willingly relinquish power than when force is used.
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Some women also require permission from their husband to access ARVs. Even
when some women begin to take the ARVs, some of their husbands refuse to get
tested.
Actually, he knows his status but he hides it from me, He hide it from me. You
understand. So when I went for my screen, I approached him. He denied it. He said
that I know where I carried it. I said for that, you have to go for your own test. He
refused (Philo, 36 year old unemployed female).
If a woman is taking her ARVs and her husband refuses to accept ARV treatment,
the woman runs the risk of reinfection and resistance to drugs. There were some
anecdotal reports from this study of men who negotiate with their wives to engage in
drug sharing. In drug sharing, the woman goes to the ARV centre to collect the
drug and then shares the drugs with her husband.
An informal discussion with another HIV patient suggests that in Eastern Africa,
when there is scarcity of the drugs, another variation of drug sharing occurs. The
husband may take the drugs on one day, while the wife takes the next day and the
cycle continues till the next appointment. As a result, neither partner takes the right
dosage of ARVs. This kind of practice increases the risk of drug resistance.
As shown in chapter 5, gender based violence is also linked with HIV infection. One
of the participants was beaten to the point of unconsciousness by her husband. She
also recounts how women receive violence because of their HIV status:
But we are all positive women. Mostly divorced or thrown out of the house. We dont
have women that are with their husbands there. Mostly if you go there you will hear
experience. You will get tired. Mostly they are women that are battered. They are
thrown out of their home or their husbands died. (Monica, 37 year old social worker)
The findings of this research are similar to those discovered by Maman et al. (2002)
in a Tanzanian voluntary counselling and testing clinic. They suggest that Tanzanian
HIV positive women are at higher risk of gender based violence. These research
findings also corroborate work by Fawole et al (2004). In a survey research
conducted in South Western Nigeria over 8 years, they demonstrate that women
working in the informal sector are at dual risk of HIV infection and gender based
violence. They are also deterred from seeking redress because of fear of stigma and
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the protracted judiciary system. Apart from being a consequence of HIV infection,
gender based violence can also be a contributing factor to high HIV incidence in
women (Gupta 2002). Using longitudinal analysis of data from a cluster-randomised
controlled trial undertaken in South Africa, Jewkes et al. (2010) demonstrate that
intimate partner violence and gender inequity in relationships is associated with high
HIV incidence in young South African women.
Although the HIV diagnosis increases the risk of gender based violence, this did not
deter the women in this study from continuing to access HIV treatment. HIV has the
potential of destroying family structures. Some couples separated or divorced
peacefully following disclosure of the HIV infection.
One of the participants, (Viktor, a 29 year old social worker/HIV activist) was rejected
by his fianc after he informed her of his HIV status. His fianc had gone for an HIV
test and discovered that she was HIV negative. Following the discovery, she decided
to leave him. Similarly, three of the female participants separated from their
husbands after they informed them of their HIV status. They blamed each other for
the infection and ended up separating. One of the three females (Monica) was HIV
positive while her husband was HIV negative. However, two of the research
participants (1 male and 1 female) remained with their HIV negative partners despite
being sero discordant couples. Seven of the participants were (6 females and 1
male) widowed because of HIV infection.
An environmental and/or organisational climate of stigma and blame makes it
uncomfortable for men to access treatment. The segregation and crowding of only
HIV patients in an ARV centre destroys confidentiality by implicitly revealing the
patients diagnosis and creates a discouraging environment for men to access
treatment. With rural urban migration, males are at an increased risk of acquiring HIV
infection. They have to face the stark reality that there is no equitable distribution of
wealth in the cities. Folayan (2004) argues that the male migrants often leave their
wives behind and utilise the services of commercial sex workers to release the stress
of poverty (Folayan 2004).
However, some better off men also engage the services of commercial sex workers
as well (Smith 2007). Engaging in sexual relations may not necessarily be with the
formal sex workers. Societal norms may allow the man to have monogamous sex
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with a female who is also seeking wealth in the city in exchange for gifts and favours
such as transportation or accommodation (Smith 2007). Campbell (2001)
demonstrates that men in the gold mines of South Africa often engage in extra
marital sexual relations when they leave their wives in the rural areas. This increases
the risk of HIV infection. Women left in rural areas who hear of their husbands
infidelity may also engage in extramarital sexual relations (Isiugo-Abanihe 1994,
Folayan 2004).
Informal discussion with an HIV worker in Nigeria suggest that some men may take
their drugs secretly without letting their wives know while other men may only take
the drugs at home but not at work. In another incident a man was reported to be HIV
positive. He had four wives but refused to let them know of his diagnosis, thus
hindering them from accessing medication. This may be in response to hegemonic
norms where the male is not supposed to let females know about his weaknesses
(Courtenay 2000). The men may feel that they will be looked down on or rejected by
the women if they expose their perceived weaknesses. The men who undertake
such practices may have more to lose as they get re infected and possibly transmit
resistant strains of the HIV virus to their wives. Loss of esteem in accessing ARV
therapy may be exacerbated if the man has to lose his job or income as a result of
long absence from work as he accesses his treatment.
However, using Namibia as an example, Becker (2000) argues that hegemonic
masculinity could be translated into innovative health promotion strategies which
depict men that take ARVs as real men who live up to their responsibility and take
care of their wives and children. Fostering this kind of norm could help in reducing
stigma and increasing access to treatment (Barker and Ricardo 2005). The use of
community social connectors is crucial for this to happen. Some of the male
participants expressed their frustration at the focus of HIV programmes on women
without taking cognisance of the importance of males in gender relations. This is
demonstrated in the following quote:
Mmm.For now, most of the things arethey give preference to women because
they say they are the weaker sex. So, whatever it is, they will always consider
women first. (laughs). In fact, there was a day that I raised a question in one of those

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organisations. I said Ah! Ah! This one women, that one women. What about men?
We too are family people. (Beatruce, 44 year old construction worker)
As Bujra (2000) argues, it is important for men to also be targeted in HIV
programmes in order for them to be successful. As Agadjanian (2002) suggests,
using data from Mozambique, transforming established gender relations and norms
is complex and will require collaborative efforts of the males and females in the
society. Any external strategy being formulated by the Nigerian government and
donor agencies which does not take community and religious social connectors into
consideration could be met with social resistance (USAID 2010). Innovative
strategies such as male support groups may also be important in improving access.
As Becker (2000) using data from Namibia suggests, some men may be more
comfortable in a male group than in a mixed group where they have to show their
perceived weaknesses to females.
The loss of male self esteem may be further worsened when complicated with belief
in religious teachings that strong religious people should not be sick. The life long
nature of ARV therapy and repeated visitation to the ARV centre is a constant
reminder to men of their HIV status and may increase the perception that men are
weak for contracting HIV infection. Due to the religious nature of African societies, it
will be important that they be involved in planning, implementation and supporting of
ARV access programmes.

6.6 Religion and spirituality

Adegoke (2007) discovered that cultural perception of illnesses as having evil
spiritual undertones (such as witchcraft) was strongly associated with the use of
spiritual healing churches as an alternative to modern health care in Western
Nigeria. Similarly, Oke (1995) suggests that religious perceptions also inform the
decision to use witchdoctors for healing. This implies that these religious perceptions
need to be taken into consideration when rolling out ARV programmes.
For the purpose of this research, spirituality is broadly defined as belief in prayer,
meditation, having faith in God and drawing strength on those beliefs. Religion is a
subset of spirituality but with a main focus on faith in God. Religion is the belief in
supernatural powers or forces that have an influence on human destiny.

While

spirituality tends to depict a belief in the existence of spirits, religion aims to draw
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humans to a supreme being (God). Different religions also tend to follow certain
rules/practices that may have an impact on health. For example, in the Muslim
religion it is forbidden to eat pork or other pig products. The ingestion of alcohol is
also forbidden in Islam as well as in some Pentecostal Christian religions.
The two main religions in Nigeria are Christianity and Islam. In this study, 29 of the
participants were Christians, while one was a Muslim. Consequently, the discussion
in this section will focus mainly on the Christian perspective. However, some attempt
is made to compare and contrast the two religions. Both religions believe in the
presence of good spiritual forces that battle against evil spiritual forces. Both
religions believe that good spiritual forces are led by God who is believed to be Spirit
Being that created the heavens and earth. He is believed to be everlasting,
omnipresent and omnipotent (Grudem 1994).

At this juncture, it may be relevant to make the distinction between orthodox, New
Generation Christian (Pentecostal/Charismatic) religions and African traditional
religions. It is impossible to do justice to this topic within the confines of this
particular PhD thesis without going off my central argument. However, to better
understand where the Orthodox and New Generation religions are now, it is
important to examine the traditions of religion that they emanated from.
For the purpose of this thesis, orthodox religions from a Nigerian perspective are
defined as established world religions. This is a commonly used phrase in Nigeria
that includes religions such as Islam and established Christian Churches (For
example, Catholic, Methodist, Baptist or Presbyterian Churches). The label
orthodox does not refer to the newer Pentecostal/Charismatic Churches. The
Christian orthodox religions were established during the colonial era when the British
colonised Nigeria. During this period, the British missionaries were able to
proselytize, mainly in the Southern part of Nigeria. Apart from preaching to indigenes
with their consequent conversion, they operated missionary schools and missionary
hospitals to not just cater for the spiritual needs but also for the educational and
health needs of the Nigerian indigenes (Metz 1991).

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In the Northern part of Nigeria, Islam is believed to have been spread to Nigeria
through the activities of Arabic Muslim traders as early as the 9th century and was
the established religion of the Northern Borno Empire (Joseph 1996, Hodgkin 2012).
In the 19th century, Usman Dan Fodio, a Fulanic Muslim who was dissatisfied with
the corrupt activities of the Muslim elite and the mixing of Hausa traditional religion
with Islam, led a jihad in which indigenes that practiced traditional religions were
killed and those who converted were saved. Establishing the Caliphate in Sokoto,
Nigeria, he was instrumental in the spread of Islam in Nigeria. By establishing the
Sokoto Caliphate, he succeeded in bringing the Hausa states under a single system
of administration for the first time in history (Hodgkin 2012). This developed system
may have made it easier for Britain to control the colonised North.
As Oyedepo (1992) argues, there appears to have been an evolution of Churches
from the orthodox churches, to the Evangelical churches (which focus on
evangelisation) to the Pentecostal churches (that focus on the spiritual experience of
speaking in tongues or glossolalia) to the Charismatic Churches (that focus on gifs of
the Spirit such as healings and miracles). Bonnke (2012) an African missionary and
doctor of divinity suggests that in Charismatic Christianity, the Holy Spirit inspires
and moves the Christian to walk in spiritual gifts. From personal experience as a
Christian living in Nigeria, examples of the New Generation Churches in Nigeria are
the Living Faith Church (Winners Chapel), Redeemed Christian Church of God, The
Redeemed Evangelical Mission (TREM) and the Victorious Army Ministry.
The New Generation Churches are more flexible than the orthodox Churches. Lay
members are encouraged to participate in religious experiences and leadership to a
greater extent than in the orthodox Churches. They are livelier with contemporary
music and decorations. This is in contrast to the orthodox churches which are more
formal with ministers needing to go to Bible School to be able to minister. However,
these are overgeneralisations as some New Generation Churches also require
Ministers to have to undergo training in order to minister, while some orthodox
churches may be lively and contemporary. Some Methodist or Baptist Churches may
also allow lay members to lead Bible reading sessions, depending on the flexibility of
the leadership.

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The Northern Islamic missionaries had converted the Hausa indigenes about 200
years before the Christian missionaries came to the Northern part of Nigeria. By this
time, it was very difficult for the Christian missionaries to convert the Muslims to
Christianity. With time, distinction between tradition and religion in the Northern part
of Nigeria became blurred. In the mainly Muslim North, traditional practices are
mixed with Islamic practices and are not separated. For example, in the Muslim
North, there is only one Islamic marriage ceremony between the husband and wife.
This is in contrast to the mainly Christian South in which there is a distinction
between the traditional beliefs and Christian practices. This is evidenced by the
practice of undertaking traditional marriages in addition to Christian Church
weddings when couples decide to marry.
The traditional marriages have local themes in them. For example, in the Igbo
traditional marriage ceremony, the husband has to look for his wife in a crowd of
women. After he finds her, the wife takes a drink and kneels down for her husband to
drink from her hands. This is in contrast to the Christian wedding which appears to
be more egalitarian as the husband and wife stand shoulder to shoulder to make
their marriage vows. Both the husband and wife also sit and feed each other. These
practices come out of belief systems of the different orthodox and new generation
religions and may have contextual influences.
Gehman (1989) an anthropologist and doctor of missiology, provides a framework for
analysing African traditional religions. He suggests that African traditional religions
are composed of three basic components, which include 1) The Supreme Being
(God) 2) the spirit world (spirits subordinate to the supreme being) and 3) mystical
powers. This framework is hereby used to analyse the Nigerian traditional religions
and contrasted/compared with the Orthodox/New Generation religions. He argues
that the Murle in Sudan emphasise the supreme Being, while the Zandes and
Yourubas of Nigeria focus on ancestral spirits/deities.
Christians believe in the Supreme Being (God, Jehovah) who they argue sent His
Son Jesus Christ to die for the sins of mankind. They suggest that Jesus Christ rose
from the dead to save man from sin, sickness and hell (John 1:12, John 3:16,
Graham 1977, Oturu 2001, Hinn 2002, Oyedepo 2005, Olukoya 2005 , Oyakhilome

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2005, Bonnke 2012, Copeland and Copeland 2012). Muslims also believe in a
supreme God called Allah.
It is challenging to discuss in detail the beliefs of all the African traditional religions in
Nigeria. I will focus mainly on the major tribal religions of the Igbos, Yorubas and
Hausas and contrast this with Orthodox and New Generation Christian religion. In
the Igbo speaking part of Nigeria, it was relatively easy for the indigenes to be
converted. They already believed in a Supreme Being (God) called chukwu or
chineke who is believed to have created heaven and earth. However, as Ene (2012)
argues, Igbos believe that chukwu is accessed through minor spirits (odinani,
composed of alusi, ala, amadiohia, anyawu, igwe, njoku ji, agwu nsi ndebudze,
ekwnsu). This is where the Igbo religion differs from the Christian religion. In the
Christian religion, it is believed that every Christian has access to the Supreme
Being (God) through Jesus Christ (John 14:16).
However, the missionaries allowed the new converts to still use the name Chukwu or
Chi for their Supreme God. This could provide some confusion as some who believe
they are converts may theoretically come to Church and may still practice going
through the odinani and smaller spirits for assistance). It is hence, impossible to
know which Chukwu a person is calling on. It all depends on the persons heart.
The real Christians believe they have access only through Jesus Christ and through
no other intermediary.
There appears to be a central theme of a Supreme Being who is a Creator of heaven
and earth. This Supreme Being cannot be accessed directly by mere mortals. Each
religion has a different story on how this Supreme Being can be accessed in the
Nigerian major traditional religions. The Yorubas similarly believe in a Supreme
Being (olodumare or olorun) who is believed to also be a creator of heaven and
earth. However, they believe that the olodumare sent another mini god (obatala) to
create the earth and a chicken to scatter the earth. This belief in a supreme being
may have made it easier for Yorubas to also be converted to Christianity.
Most of the religious beliefs of the traditional Yoruba and Hausas, are at the spirit
world level. The traditional Yorubas especially believe in the deities or divinities that
provide a link between man and the supernatural. These include divinities such as
ogun, the divinity of iron and metallurgy, shango, the divinity of thunder (statue lies
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on the building of the Nigerian Electric Power Authority) who has a hammer similar to
thor in the West and oshun (the feminine divinity) believed to reign over love,
intimacy and beauty. Even though the West attempts to provide a front of shunning
from these beliefs, images of divinities worshipped in the past in Africa, such as
queen of the coast (mermaid spirit) still appears on corporate logos such as
Starbucks (Eni 1994). Among the Hausas the animist traditional practice of
Maguzawa may still be practiced. Animals may be sacrificed for personal gain or as
magic to project harm to others. These are sacrificed to spirits (Iskoki). Maguzawa
was being practiced among most Hausas before being supplanted by Islam
(Greenberg 1947).
The mystical level includes magic practices such as juju. This is particularly popular
in the Yoruba speaking part of Nigeria. There appears to be some linguistic links with
Voodoo in Haiti. Juju involves wearing or placing objects such as amulets, charms or
concoctions superstitiously for witchcraft purposes. These objects are believed to be
evoked to bring protection or to harm opponents. There are some reports that juju
may also be used in human trafficking in Nigeria (Al Jazeera 2012).
Gehman (1989) suggests that is possible for some orthodox churches to turn a
blind eye to the mixing of Christian religion with traditional religion. He provides a
case study from Kenya where the All Saints Cathedral in Nairobi refused the wishes
of a dead man (Mr Otieno) to be buried in the city where he lived instead of in his
village (pp. 15). Traditionalists in the village believed that the man should be buried
in the village, while his wife wanted his wish to be buried in the town to be approved
(as he had converted to Christianity in the town). The case went to court and he was
finally buried in the village according to the wishes of the traditionalists.
The All Saints Cathedral refused to hold the funeral service in the cathedral as the
Luo tribe had desired. Here we see a tension between, traditional beliefs and
religious beliefs. At the Supreme Being level, Muslims similarly believe in a Supreme
Being but they do not believe that they have access through Jesus but rather
through Mohammed. In the Northern part of Nigeria, when Muslims converted to
Christianity, the Missionaries still allowed them to use the name Allah for the
Christian God (Moshay 1995). Moshay (1995) suggests that the Christian Allah and

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the Muslim Allah are different. Some of the early Christian and Muslim converts
may have mixed their traditional and Christian beliefs.
Mixing of different religious beliefs (syncretism) is not unique to Nigeria. In Scotland,
even though Mary Queen of Scot converted from Catholicism to Protestantism, she
is reported to have still practiced Catholic mass secretly to the anger of John Knox
(A Scottish religious reformer), who had conflicts with her throughout her reign as
Queen of Scotland (Scottish Monarchs 2012). The influence or impact of these
mixings and the potential role it may have in building or breaking relationships
between different tribes, belief systems and their spiritual implications are beyond
the scope of this thesis and may require future research.
As most (More than 99%) of the participants of this study are from the Christian
religion and suggested that they do not practice Nigerian traditional religions, in the
next section, I focus mainly on the impact of the Christian religion (OrthodoxCatholic) and New Generation (Redeemed Christian Church of God) on access to
ARV therapy in Nigeria.

6.6.1 Role of faith in God in access to ARVs

All the participants in the study were religious and believed that their faith in God
helped them to access treatment. Most of the participants suggested that they are
able to overcome their fears by having faith in God. This is evidenced in the following
quote from one of the interviewees:
God helps them to access treatment. Thats the mentality of Nigerians. 80% of
Nigerians believe that everything is from God. (Tama)
Some were already religious before becoming HIV positive while others became
more religious in response to their diagnosis. As demonstrated in the following
quotes, one of the participants (Halima, 37 year old unemployed female) claims that
she changed her previously risky sexual behaviour and gave her life to Christ as a
result of the HIV diagnosis.

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Halima: I thank God because maybe without the HIV today, I would have been doing
many wrong things. It made me to get close to God and I discover out some
othermaybe I was misbehaving or other life that I was living before. I have to come
close to God and beg God. I have to be going to church constantly I nowI gave my
life to Christ.
Researcher: When you say misbehaving what do you mean by misbehaving?
Halima: Maybe the life I was living, Im not supposed to beIm not supposed to be
knownwith a man before getting married. Im supposed to beabstain before
getting married. Butwell, my own adviceShould I continue?
Researcher: Yes.
Halima: My own advice is our fellow humanour brothers and sisters that are still
coming up, let them abstain till they get married so that they do not fall into this
problem.
Grudem (1994) writes that there is a Being who created human beings and the world
and desires human beings to live under His guidance. As Adogame (2007) argues,
Nigerian peoples belief in divine healing (theotherapy), gives them hope to cope with
the HIV diagnosis. This assertion is reflected in accounts of participants in this study.
The national president of one of the support groups in Nigeria highlights the point
that Nigerians use their faith as a coping mechanism.
Peoples belief in God plays a major role in helping them cope with their HIV
diagnosis and access treatment. Nigeria is a very religious country. When there is no
more hope, people turn to God. I believe that I am being kept by divine healing of
God as I am not on ARVs but am still healthy(Tama).
Similarly, Martha a 35 year old female teacher turned to prayer to help her cope with
her diagnosis.
Yes. Before I cried very well. The thing worried me. I refused to tell anybody. I spent
sleepless night for 2 days. My heart will pain me. I said Jesus, I need your peace. I
was so desperate. I did not know who I will tell such a terrible news to. So I just told
Jesus that I need your peace. It was like my heart will cut. Yes. (Martha, 35 year old
teacher)
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Monica, sees God as a dependable person who helps her overcome her
predicament with HIV. She believes that God is able to heal her emotionally and
physically.

And God is unquestionable. He heals who he chooses to heal. The Bible says that
He has mercy on who He wants to have mercy. So all we can pray and believe it and
claim what God has said to you in the Bible. Its well. And its better than when you
begin to sanction yourself unnecessarily. I pray. I fast but I dont thinkyou should
know the Word very well. No person will even go and subject you to that kind of
condition. Thats why its good to know your Bible. For there are timesyou cant
have the pastor all the time. Most times we have half baked Christians that maybe in
their lifetime they only go to church. After Sunday, they keep their Bibles. They dont
study. So when situations like this come, they want to depend on the Pastorsto be
praying for them. So, its good to know your God, that after the death of Jesus Christ,
the veil has been torn and you have access to go into His presence and ask Him of
whatever you have (want)you need and He will do it for you. So, if you are a
Christian and you know, its not as if you will not have troubles. Trials will come but if
you are strong, the Bible always says that you will be an overcomer. And as I read
the Bible, I always see that it came to pass. Nothing has come to stay. It shall come
to pass. (Monica, 37 year old social worker/counsellor on ARVs)
Shekira believes that God is real. She suggests that the person living with HIV needs
to make practical efforts to access the ARVs as God works through people to solve
ARV access and other social problems. Linda, similarly believes that God can heal
her miraculously of HIV. She suggests that faith is essential for this to happen and
that it is important to continue taking ARV therapy if an HIV positive person does not
have a strong enough faith for miraculous healing.
Yes, we believe that God is real and God is existing but the only thing that is there,
put your faith in action. Put it in practice but dont say because God is alive or God is
there for you, then you know what to do and you are not doing it. God cannot come
down from heaven and solve your problems. He will send one or two persons.
(Shekira, 19 year old student)
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I believe in miracles. Nothing God cannot do. But even the bible says if your faith
cannot carry amfor like me you cant ask me to do fasting make HIV go. Really I
want HIV to leave me for so many days. (Linda, 27 year old counsellor)
The findings of this study are similar to those identified by Makoae et. al., (2008),
whose study across 5 African countries showed that Africans turn to God as one of
their coping strategies for dealing with HIV stigma. Analysis of the perception of the
God concept developed from the research is depicted in table 10. The table provides
an understanding of how the participants see God. An understanding of some of the
way patients believe God to be may assist health care workers in building rapport
and supporting them in taking the ARV therapy. Although the participants believe in
God, they claim that they receive wisdom through their faith to make decisions and
adopt lifestyles that enables them to access treatment and/or live healthy lives. This
is evidenced by the following quotes from interviewees:
I believe that the wisdom to know what to do not to fall ill. What you eat, exercise
you take, kind of places you go. (Tama)
Its part of my faith that I dont drink, go with women. Its the healthy lifestyle that
goes with the faithBut with lifestyle, faith and beliefs. (Tama)
Its (by) Gods wisdom people are able to get the drugs and get us going. (Monica,
37 year old social worker/counsellor on ARVs)

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Table 10 A limited conceptualisation of the God concept developed in current research

Properties of God

Dimensions of God

Unchangeable

Fatherly dimension that directs affairs

of man. Although the world changes,
He does not change
I believe that FatherThat God is
three in oneThe Father, Son and
the Holy Spirit (Monica)

Independent

Sonly dimension that redeems man

and brings man to God
Thats the belief in Nigeria Trinity.
Most Christians believe in the Trinity.
They talk of God the Father, God the
Son and God the Holy Spirit.(Tama)

Eternal

Holy Spirit dimension that powers the

move of God. He is infinite, has
always existed and continues to exist
indefinitely
I believe that its the hand of God
(that) I remain healthy (Tama)

Simultaneous

Both spirit and human in Sonly

dimension
(Grudem 1994)

Sequential

He is orderly and acts at His

ordained time
(Grudem 1994)

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6.6.2 Religion and health

In Nigeria, there is a strong belief in the spiritual aetiology of HIV infection that is
often not recognised by health care practitioners. This further helps in alienating the
patient from the health care worker. One of the participants suggested that she
believed she was HIV positive because she refused to marry her former boyfriend.
She believed that he had placed a curse on her for disappointing him. Some other
participants believed that someone they hurt in the past put a HIV curse on them.
This is demonstrated in the following quotes:
Ah. Sickness always come with witchcraft now (laughs). Its always using attack sha.
..The sickness. I saw the spirit of attack in that thing. Because, thousands of people
in the day to daythousands. If ten people sit down now, almost 7 people will tell
you say Its because I dey help my mother, na him one women come konk me for
head.. (i.e Its because of the fact that I help my mother that a woman (witch) hit my
head with a curse). You know that kind thing.(i.e You understand). So, they still
believe it. Some people will saylike me I believe say its the guy wey I
disappointedI disappoint wey I no marry am, na him carry go bury something (i.e
Because I refused to marry a guy, he buried some juju in the ground). You know. Na
later when I discover. So if you keep 10 people, the same thing they will tell you.
They still believe that its witchcraft attack. Some people will attack their mother in
law. They will attack their sister in law. (Phela, 31 year old business woman)
But now look at it. All her mind and belief is that its her mother that sent the attack
from the village to her. So, I think witchcraft, most of us have been sayingif you
come to our meeting days, you will hear story, you will hear story, you will laugh.
One of them will say ah, my mama na him give me witch. You know prophet.
Prophet say na my mama send me witch. Its an attack. My senior brother. Na my
this. Thats why its HIV. So, there is no way that you run of HIV and you tell people
that it is an attack from the village. (Shekira, 19 year old student)
Due to this belief, a lot of the participants disclosed their HIV status to their religious
leaders before disclosing to their close friends. As evidenced by the following quote,
some religious institutions assist members to access ARVs.

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Well religion will have a role to playmaybe by preaching about ARVs because
whether you like it or not in the church or in the mosque, you can see people that are
positive. So I think it is the role of the pastor or the Reverend father to preach about
taking ARVs. Of course, like some Catholic organisations they are into it. Like from
BenueLike St Francis Catholic Church in Benue, when their people come to this
place to come and access the ARVs, when they were not having a centre in Benue
stateand even negotiated and they bought a bus for them. So at every point in
time, they bring them to come and get their drugs. So, I believe that they encourage
taking ARVs in their organisation (Henrietta, 36 year old police woman).
As Marshall (2005) argues, part of the problems in tackling HIV/AIDS in Africa is the
tendency of the Western biomedical scientific world to dismiss or ridicule these
beliefs in preference for the general hegemony of scientific knowledge that links HIV
with AIDS. In order to have effective ARV access programmes, it is important to take
cognisance of the important influence of religion. Personal experience working in
Nigeria as a clinician and findings from this research suggest that patients take the
words of Pastors (Christian religious leader) or Imams (Islamic religious leader) as
more important than that of the medical doctor. This is demonstrated in the following
quote from one of the research participants:
The problems we are facing now with the networkehsome people one religion
will stand up today and be claiming cure in the name of God. That prayer can heal.
Ive prayed for you. Dont go and take your drugs. So the people attach so much
importance to the clergy that they believe them so muchthey tend to break their
drugs until when they start having problems. You are cured in Jesus name. So now
the problem we are facing. (Jimmy, 37 year old unemployed graduate)
The important role of religion on health has been well documented. Yeager et al
(2006) argue that religion positively influences health in three ways. Firstly, religious
communities encourage health enhancing behaviours (such as having monogamous
sexual

relationships).

Secondly,

religious

meditation

has

been

linked

to

psychological health benefits. Thirdly, the social dimension of religion and the social
connections that emanate from religious practices may contribute to improved
health. However, it may not only be the religious beliefs per se that contribute to
234

improved health. The social interaction of people coming together in a common bond
may also have a role to play. A lot of other confounding factors may also contribute
to improved health. Nevertheless, the evidence on the potential positive role of
religion on health is persuasive2.
Yeager et al. (2006) demonstrate in a longitudinal survey of older Taiwanese that
religious attendance is significantly associated with lower mortality even after
controlling for prior self-assessed health status. In psychiatry, it has been long
recognised that being religious is a good prognostic sign for recovery compared with
not being religious (Collier et al. 2003). Following a review of 1600 articles on religion
and health, Koenig et al. (2001) also affirm that in terms of mental health and
psychological effects, the relationship between religion and health is overwhelmingly
positive.
In terms of HIV prevention, there is some evidence that suggests that some Islamic
practices may contribute to low HIV prevalence in Senegal (Lagarde et al. 2000).
Similar research in Ghana suggest that being a Christian increases the chances of
women being knowledgeable about HIV/AIDS prevention compared to non
Christians. However, the results of the study were inconclusive as to whether this
knowledge translates to safe sexual practices (Tayki 2003).

In Thailand, using

structural equation modelling, Chamratrithirong (2010) demonstrates that there is a

positive association of spirituality of parents and teens with reduction of adolescent
high risk behaviour.
In terms of psychological support of PLWHA, religion has also been found to be
important. In the United States of America, Sowell et al. (2000) suggest that greater
involvement in spiritual activities has been associated with lower emotional distress
2

Seeman et al. (2003) demonstrate that there is a link between Judeo-Christian practices and lowered blood

pressure. Using a cross-sectional research strategy in the United States of America, Maselko and Kubzansky
(2005) demonstrate that religiosity and spirituality have a positive synergistic effect on health. Similarly, the
WHOQOL spirituality, religion and personal beliefs Group (2006) using data from their cross cultural study across
18 countries suggest that in those with the poorest health, belief in religion/spirituality was important in helping
them cope with particular support in the psychological domain.

235

in PLWHA. Similarly, Simoni et al. (2002) demonstrate that spirituality and religion
help African American and South American women living with HIV/AIDS to adjust
and cope better psychologically.

In a recent study conducted by Maman et al.

(2009) amongst PLWHA in the Democratic Republic of Congo, it was argued that
female participants from their study who believed that God could cure, were able to
cope better with their HIV status.
Ironson et al. (2002) also demonstrate that HIV positive persons who are spiritual
have lower levels of cortisol. Cortisol is a biological marker for stress. Hence, it
appears that spiritual beliefs and religion may be crucial in combination with other
coping strategies in reducing the stress that emanates from the patient having the
HIV diagnosis. These potential positive effects of religion suggest that it needs to be
taken into consideration in the planning and implementation of ARV access
programmes. Findings from this current study suggests that the stress that emanates
from the fear of dying of HIV can be very great and perceived as adding to the
burden of poor health.
Belief in God as well as psychological and social support are all coping mechanisms
that participants in this study utilised in overcoming their fear.

This theory is

supported by a resource person employed in this study who suggested that although
her HIV positive sister was on ARVs, it was actually the fear of dying that killed her
and not the ARVs.
Its the fear. The fear killed her. Even though she was on ARVs and had her family to
support her, she had a strong fear of dying of HIV. It is the fear that killed her.
(Glade)
Another resource person for this study has been HIV positive for more than 10 years.
He asserts that he has been healthy without being on ARVs. Instead he has been
taking what he describes as immune boosting herbs. He suggests that his religious
disposition may play a role in helping him overcome HIV.

236

Peoples belief in God plays a major role in helping them cope with their HIV
diagnosis and access treatment. Nigeria is a very religious country. When there is no
more hope, people turn to God. I believe that I am being kept by divine healing of
God as I am not on ARVs but am still healthy (Tama).
There are some participants who suggested that being spiritual or religious helped
them overcome different barriers to access ARV treatment. One of the participants
also suggested that she was able to help 9 people to go for HIV testing and access
ARV therapy. This happened after she told the congregation that although she
looked healthy, she was HIV positive and on ARVs.
I remember last year June, we went to my village because there is one
organisationAfrican Health project. Its under late Dr Onoja. We went there for
programme. I was brought up in my home town. I went to the church. You know how
big Bible faith church is.And I stood and tell them who I am. People were
surprised. Although my joy that day, immediately after I left them, I have eleven
people who find me come Abuja. I took them to the hospital. Nine of them are
positive. Its only two that are negative. (Happiness, 38 year old business woman)
Apart from helping people access ARVS, religion may also serve as a coping
strategy for people already accessing HIV treatment and assist in sustaining
adherence to ARVs in Nigeria. The thought that God is in control helps them cope in
their experience (Oturu 2011).

6.6.3 Religion as a coping strategy to access ARVs

Some of the participants used their faith in God as a coping mechanism to help them
access treatment at a time when access was difficult. One of the participants
suggested that at the time when access to ARVs was very difficult in Nigeria, it was
his faith in God that helped him overcome the different barriers to access treatment.
So it was difficult but I was believing God that if I come, He will make a way and I
will be on the list. Fortunately for me, getting to national hospital, they start the
procedure. I found out that it was free. (Jimmy, 37 year old unemployed graduate)

237

Most of the participants believed that HIV could be caused by spells or curses from
witches. The religious leaders in churches wield a lot of influence. They could help
people access treatment by supporting them in prayers and linking them to where
they can get the ARVs. On the other hand, they can stand as a barrier to access by
telling members of their congregation to rely on prayers instead of taking the ARVs.
Em, even when em I told my pastor my senior pastor, he said thathe told me the
story of a lost daughter who died after getting the drug. That there was no treatment
then. So that I should base my faith on God. But now its no longer like that. Most of
the churches they know that God gives wisdom to doctors. (Jane, 35 year old
receptionist)
Well, religionsome part of religion they say prayerI could remember one of my
in law. She is late. She went to her husband side and then they told her she should
stop the drugs and start dry fasting, so that by doing dry fasting she will be healed.
And she stopped it for 4 days. So she did the fasting. After that 4 days3 days she
give up. (Sonia, 44 year old female petty trader)
Similar links between religion and access to health care were demonstrated by
Gyimah et al. (2006) in Ghana. They suggest that Moslem and traditional women
were less likely to use maternal health services than Christians. Personal experience
working as a clinician in Northern Nigeria suggests that a similar trend exists in
Nigeria. Less use of maternal services tends to occur especially in places where
early hospitals were built by Christian missionaries (Oturu 2006).
Religious institutions have been directly involved in the provision of health care
services. In a recent UNAIDS report, it was revealed that 50% of hospitals in the
Democratic Republic of Congo are managed by local churches (Maman 2009).
Agbonyitor (2009) describes in his qualitative study in Plateau State, Nigeria how
faith based organisations such as the Gospel Health and Development Service
support home based care to PLWHA. This trend may have an impact on how people
access ARVs. One of the participants suggested at the time of the study that the
Catholic Action Committee on AIDS was about to start rolling out ARVs. He
suggested that if this were to happen, he would switch from the government hospital
238

he was attending to the religious one. This is because health care workers in
religious organisations appear to be more friendly and courteous than those in the
government hospitals.

6.6.4 Mandatory HIV testing in 1igerian churches

The mandatory testing of prospective marital couples in churches is now a norm in
most churches in Nigeria. This may help facilitate access to ARVs as HIV positive
couples that know of their HIV status may then start attempting to access ARVs.
However, there are some human rights concerns with this practice. In the case of
sero discordant couples, this may lead one of the partners to desert the HIV positive
partner. Even in cases where both partners would like to marry, some churches will
refuse to wed them. This may contribute to increase in stigma. This is demonstrated
in the following quote by Jimmy, a 37 year old unemployed graduate:
So as some of them they are increasing more stigma and making other people not
to come out. Hiding and spreading And one thing they are doing is now, I dont
know who mandated them that em most of these churches, if you want to marry now,
you must go for HIV test. And by the time you go for HIV they tell you that Gbosai!
You are not going to marry yourselves. While the parties are ready. (Jimmy, 37
year old unemployed graduate)

These findings are in agreement with those discovered by Arulogun and Adefioye
(2010) in Western Nigeria. Using chi-square statistics and logistics regression of
validated questionnaires from 571 unmarried youths, they demonstrate that the
current mandatory HIV testing of couples is associated with increase in the level of
HIV stigma and break down of relationships. HIV testing needs to be voluntary for it
to be effective as a preventive strategy.
These findings are further corroborated by Uneke et al. (2007) who suggest the
mandatory pre-marital screening generates social stigmatisation and infringes on the
fundamental human rights of HIV infected persons. As Vermund and Wilson (2002)
argue, the stigmatisation is exacerbated when the purpose for the test is denial of
marriage and other forms of discrimination in contrast to providing support, assisting

239

to access to ARVs and increasing HIV Stigma awareness. HIV positive couples
should not be ostracised by religious organisations. Instead they should be
supported to access the ARVs by the religious organisations they belong to.
Some negative responses in the church to HIV/AIDS include stigmatisation of those
known to be HIV positive or loss of confidentiality of their HIV status as the results
may be released to other people in the church. One participant recounted how
people refused to sit near him at a church service. However, he could not easily
identify if this was due to his socio-economic status or his HIV status. It may have
been due to both.
Maybe I dont because it is possible that like maybe if I come to the church, and I sit
in the pew, somebody might just decide to change. It may not necessarily be
because me I am coming there. It may happen to any other person who is not
positive. Some people just naturally stigmatise others. (Beatruce, 44 year old
construction worker)
Ucheaga and Hartwig (2010) argue that it is important that religious leaders be
educated on how they can help educate their congregation about HIV and sign post
them to where they can get help and support. In severe cases, some people may be
excommunicated from the church because of their HIV status. This is demonstrated
in the following quote by an interviewee in this study:
It didnt end there. We should take it to the church. Tell the Reverend of that church
that my daughter she is HIV positive. The Reverend said Eh! And you are living in
the same house with her? Why cant you drive her out? Ok. I will talk to her father.
That evening was the Bible study of the church. So, we went for the Bible study.
Everybody was giving me space at the church because I didnt know what is
happening. So, they now called my dad. The reverend after the service now called
my dad. Your daughter is a HIV positive. She may infect others oh! Just take her.
There is a place they normally dump people at Wuse there. Take her there. When it
is the time for her to die, let her die. (Shekira, 19 year old student)

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Religion was found to have a dualistic role in terms of access to ARV therapy. On
the one hand, it could stand as a barrier. There were some patients who were asked
to fast and pray instead of accessing ARVs. Some patients also started taking ARVs
and coupled this therapy with prayers. However, when they test HIV negative (as the
virus becomes undetectable), they claim to be healed and stop taking medication. As
argued earlier in chapter 5, stopping ARV medication may lead to worsening of
health of HIV patients as a result of drug resistance.
However, there were some positive instances where the church helped support
PLWHA. The Catholic Action Committee on AIDS and the Redeemed Christian
Church of God were highlighted as religious organisations that provided financial and
nutritional support to PLWHA in Nigeria.

6.6.5 Religious dualism and access to ARVs

Religion in Nigeria has both positive and negative effects on stigma and access to
ARVs in Nigeria. However, the potential of transforming the negative aspects and
enhancing the positive aspects to enhance health is immense. In terms of wellbeing,
religion appears to have a positive effect in some instances from the spiritual,
psychological and social support that religious bodies offered to some patients living
with HIV (Simoni et al. 2002, Adogame 2007, Maman et al. 2009).
While a lot of studies have looked at the links between religion and health, few have
looked at the link between religion and health seeking behaviour. This study showed
that religion does seem to have a dual role depending on the religious leader of the
religious institution, the religious institution itself, the denomination within the
religious institution and possibly the members of the congregation. The findings of
this study are similar to those of Gyimah et al (2006) in Ghana where they
demonstrate that norms of some religious groups may encourage negative attitudes
towards orthodox medicine.
The research findings of this research are also similar to a study conducted by
Wanyama et al (2007) in Uganda, which suggests that some patients belief in divine
healing may serve as a barrier to uptake of and adherence to ARVs. When the
patients believe they are healed from prayers, they may decide not to take their
241

ARVs. Some patients may also prefer to pray privately for divine healing, rather than
pass through the stigma of accessing the ARVs publicly. Adogame (2007) also
argues that in some Nigerian churches, there is a tendency not to be involved in HIV
activities so as not to be associated with promiscuity. Agadjanian (2005) argues,
following a logistic regression analysis of survey data and semi-structured interviews
from 731 participants in Mozambique that policy makers need to take cognisance of
the differences between different religious institutions in order to harness the
potential to tackle HIV.
In summary, within the context of ARV therapy, religion serves some important
functions. Religion may influence the economy. Max Weber suggests that the
Protestant ethic fosters capitalism (Weber and Swedberg 1999). Religion may
influence Western countries philanthropic gestures such as the provision of aid
including ARVs to Africa. For example, the PEPFER fund from USA was initially
based on evangelical principles and conditions (such as refusal of donor funding to
be used for abortion or non-abstinence based reproductive education initiatives)
(Avert 2013).
As discussed earlier, religion helped provide the participants with hope and faith to
cope with the trauma of the diagnosis. It provides a source of consolation the face of
the crisis. Fear and anxiety may be ameliorated through religious practices such as
prayers and singing. As Talcott Parsons argues, religion may provide individual with
the resilience and tenacity to go through adverse life events (Turner 2010). However,
religion may also serve as a deterrent from accessing ARVS as religious adherents
may decide to partake in prayer therapy and refuse taking ARVs.

Marx (1844)

argues that religion is the opium of the masses. Religion may help soothe the pains
of poverty in Africa. However, the evolution of millionaire pastors and congregations
in Nigeria such as David Oyedepo Ministries International (Estimated by Forbes
magazine to be worth $150 million) suggests that in the Nigerian context the rich
may also adopt the soothing advantages of religion (Forbes 2011). On the other
hand, some people may exploit the soothing advantages of religion to enrich
themselves.

242

As Durkheim (1915) argues, religion provides a course of solidarity as members of

the congregation can come together in unity under the banner of common beliefs to
provide support for the individual facing a crisis. This was seen in some cases where
the Church rallied round some people infected with HIV, supporting them with money
and transportation to where they could access ARVs. However, Talcott Parsons
suggests that religion may be used as a form of socialisation and social control as
religious messages assist in making religious adherents behave in a socially
acceptable manner and adopt values and norms such as honesty (Turner 2010).
Religion may serve as an avenue to promote welfare as religious doctrines that
suggest that helping

the poor is a form of rendering service to God (e.g. Proverbs

19:17) may be drawn upon by religions organisations (such as the Catholic Action
Committee on AIDS and the Redeemed Christian Church of God) to provide financial
and nutritional support to people living with HIV/AIDS. Religion may be instrumental
in providing social stability on the one hand and also equipping individuals cope with
adverse situations in society (Preserve articles 2013).

6.7 Conclusion
In this chapter, the role of structural factors on access to ARVs and their link to
global issues was explored based on findings from the rich qualitative data.
Structural issues play a major part in not only prevention of HIV, but also in access to
ARV therapy. Although, it is difficult to evaluate the effectiveness of structural
interventions, the fact that they do play an active role suggests that they need to be
taken into consideration in ARV access programmes. The dynamic and
unpredictable nature of structural factors makes them difficult to quantify or evaluate.
It is also challenging to control for structural factors in experimental designs on their
effectiveness. Due to a lot of confounding factors, it is complicated to determine
which structural factors are most significant in bringing about changes in health
seeking behaviour. It is important to highlight the fact that structural issues are
constantly changing with time. Issues that are important at a particular point in time
may reduce in significance compared with other factors. This occurs due to
globalisation which influences local culture. Also different structural strategies are
being implemented by numerous agencies in Nigeria.

243

The socio-cultural context is very important as different health care plans and
government interventions make access measures in one context obsolete or
negligible in another context. The influence of religious leaders, herbalists, friends,
family members and politicians is significant. In order for ARVs to become widely
accessible in Nigeria, the various structural factors need to be taken into
consideration such as provision of ARV centres in rural areas. More information on
the operationalisation of structural strategies that can assist in improving access to
ARVs is provided in chapter 7.

244

Chapter 7

Discussion and conclusion: Stigma in access to ARVs in

Nigeria
7.0 Introduction
My thesis is that although access to ARVs has improved over the years in Nigeria,
stigma still remains an important barrier. However, participants of this study were
able to overcome stigma and other barriers through their use of social connections.
The findings of this study also suggest that there are other structural forces that
influence access to ARVs and shape the way in which HIV stigma is experienced.
These include political, economic, gender and religious/spiritual factors.
This first aim of this research was to examine the experiences of people living with
HIV in Nigeria as they access HIV treatment. This aim was addressed In Chapter 1
through a literature review where the ways in which different factors influence stigma
was discussed against the background of the Nigerian HIV context. From the data
collected during fieldwork, it became apparent that stigma is a major issue in the
experience of people living with HIV accessing ARV therapy. Although there is
extensive discussion on stigma in the HIV literature, until recently the literature on
treatment in resource poor settings has tended to focus on economic issues and the
pharmaceutical industry rather than stigma (Msellati 2003, Ogunro et al. 2006,
HERFON 2007, Agbonyitor 2009). Using empirical data from the field, the practical
experiences of people living with HIV/AIDS in Abuja, Nigeria were discussed in
chapters 4, 5 and 6.
In chapter 2, a review was undertaken of current individualistic access frameworks.
Although they are important in explaining aspects of how participants in this research
access treatment, it was argued that they may be limited in explaining complex
social phenomena that surround access to ARVs in Nigeria. To understand how
participants

in

Nigeria

access

treatment

it

was

suggested

that

new

conceptualisations are needed that go beyond the individual to include broader

social and structural dimensions.

245

In chapter 3, it was argued that a qualitative methodology may be useful in achieving

the aims of this research as it is useful in examining complex social phenomena that
surround access to ARVs in Nigeria such as stigma. It was suggested that a
qualitative methodology is beneficial in researching hard to reach groups and
sensitive subjects such as HIV. Furthermore, it was demonstrated that using
Grounded Theory, it is possible to develop new middle range social theories for HIV
programmes that are context specific. The Grounded methodology allowed me to
develop theories from interactions with data and patients attempting to access the
health care system. Personal reflections about how I used the methodology, my role
in the research and the impact of the research on my professional practice were also
analysed.
The second aim of the study was to investigate HIV related stigma as people living
with HIV/AIDS attempt to access treatment. This aim was addressed in chapter 4,
where the way patients living with HIV experienced different forms of stigma was
discussed. The third aim of this study was to generate a theoretical framework for
analysing HIV related stigma using data grounded in the experiences of the research
participants. This aim was also addressed in chapter 4, where a new typological
theoretical framework of HIV stigma developed.
Utilising the typological framework, it is argued that different forms or typologies of
stigma may be tackled using unique strategies that are context specific. As echoed
in the thesis, there is no one size fits all strategy that will work. Different types of
stigma will require different lines of attack in order to be effective. Although the data
collected showed that stigma was a major barrier to accessing ARV therapy, the
participants used social connections as a way of overcoming stigma and gaining
access to ARVs as discussed in chapter 5. The last aim of this research was to
investigate how structural factors affect access to ARVs in Nigeria. This aim was
addressed in Chapter 6, where structural issues such as poverty, politics, religion
and gender and their influence on stigma and access to ARVs were discussed from
the participants perspectives. As discussed in chapter 6, there are difficulties in
identifying social solutions to structural challenges.

246

This current chapter is organised in three main sections. In the first section, the
academic contributions of this research are discussed along with how it builds on
related literature. In the second section, a reflection is provided on research findings
of stigma and the role of social connections in influencing stigma. In the last section,
the reflections on structural factors in ARV access are discussed and possible policy
implications of this research are provided3.
The discussion in this final chapter takes cognisance of the social context of the
research participants. Most of the participants in this PhD study came from semiurban and urban areas. Consequently, the discussions centre mainly on HIV positive
patients who live in semi-urban and urban areas of Nigeria, with all that that implies
such as access to health services, utilities and the media.

7.0.1 Research contribution

An important contribution from this research as discussed in chapter 5 is the
development of the social connections theory. It theorises the pathways in which
social connection links within social capital can be harnessed to reduce stigma and
improve access to ARV therapy and is an important contribution to understanding
how people living with HIV in Nigeria overcame the barrier of stigma.

Social

connections are flexible components of social capital that can be harnessed and
used to improve health. This theory adds to the social capital dialogues by academic
advocates such as Putnam (1995) and Gillies (1998). However, social connections in
this research are conceptualised as not only being an important factor for
maintaining health but as a tool that can be used to influence people to access
ARVs. A further contribution to knowledge also discussed in chapter 5 is the
development of the stages of access theoretical framework which suggests possible
stages that patients pass through as they attempt to access ARVs. As they pass
through successive stages, it is argued that different types of stigma serve as
inhibitors to accessing ARVs while social connectors facilitate or constrain
participants from accessing ARVs.
3

On reflection, taking my imaginative skills into consideration, I may have utilised the practice of sociological
imagination in discussing the sociological problem of stigma in access to HIV therapy as espoused by Mills
(1959). Through sociological imagination, hitherto isolated items are pulled together by finding unsuspected
connexions of different concepts within the research data (Mills 1959, pp.221).

247

Another contribution is the development of the typological stigma framework.

Previous conceptualisations of stigma have tended to focus on the individual and
interpersonal levels. As discussed earlier in chapter 4, Goffman (1963) focuses on
effects of the discredited attribute on the individual as well as societal reactions to
the person with the stigmatised attribute. Jones et al. (1984) similarly focus on
different types of societal reactions to the person with the stigmatized attribute. While
Kurzban and Leary (2001) suggest that societal reactions are evolutionary strategies
developed to protect society from the person with the stigmatised attribute, Parker
and Aggleton (2003) highlight the power differential between people who do not have
the discredited attribute and the person experiencing stigma.
With the stigma typological framework, it is argued that stigma occurs at individual,
interpersonal, community and institutional levels. This framework takes cognisance
of structural issues that influence stigma and how people with HIV in Nigeria access
ARVs, despite the multiple barriers and difficulties described in the findings. These
findings have been disseminated through a journal publication and conference
presentations (Oturu 2011, Appendix 5).
Brown et al. (2001) in a literature review of various anti-stigma strategies contest
their effectiveness. They demonstrate that strategies in the Western world tend to be
individualistic with underlying behavioural psychological underpinnings. In contrast,
intervention strategies in African countries tend to be community based. As they
infer, what is needed are long term focused and well coordinated programmes that
tackle access issues at multiple levels of causation. As I highlight in table 11
developed from this PhD research, a multidisciplinary approach is advocated that
takes cognisance of different levels of intervention and multiple strategies of
involvement. Reflections on the research participants experiences of stigma are
discussed in the following section.

248

7.1 Reflections on experiences of research participants

In this section, I focus mainly on stigma as it is the main barrier to accessing ARVs
identified in this study. I use this topic as an entry point into the debate for structural
mainstreaming within HIV access programmes. Links with the various structural
factors are also made in this section.

7.1.1 Reflections on stigma

As demonstrated in chapter 5 of this thesis, it was reported that people familiar to the
patient may also be involved in discriminating against the HIV positive patient. Using
a mixed methodological approach and using data from the Igbo-speaking part of
Nigeria, Moughalu and Jegede (2010) suggest that the family is an important social
resource that could be effective in helping HIV patents overcome stigma. Hilhorst et
al. (2006), similarly demonstrate that members of the nuclear family and first-line
relatives are an important source of social support for patients living with HIV/AIDS in
Benue state, Nigeria. However, this research has found that the profound shock a
family experiences at the moment of news of an HIV diagnosis of one of its members
is too strong for these families to respond to positively.
It is difficult to explain why close knit family structures in this study that tend to
support each other disintegrate in the face of a HIV positive diagnosis with
subsequent discrimination. However, research undertaken by Gillies (2001) on family
of street gangs with close bonds suggest that these bonds may disintegrate in the
presence of a crisis. It may be that although the family bonds in African families are
strong, the presence of crisis in the form of a family member being diagnosed as HIV
positive may lead to disintegration of this bond as a result of complex socioeconomic and psychological processes. The overwhelming force of HIV stigma
appeared to break strong family bonds. As discussed in chapter 5, social capital in
the community may be harnessed in such situations. Donor agencies, charities,
NGOs and the State may collaborate to offer resources, structures, processes and
an enabling environment for families to be supported when they face the crisis of an
HIV diagnosis. Further research studies that target family members are needed to
analyse why some family members discriminate against HIV positive members
before effective strategies can be devised to tackle familial stigma.
249

Table 11 Stigma intervention framework developed in current PhD research

Type of stigma

Social Connection Strategy to tackle stigma

Self stigma

Social psychological

Social

Self-help

support

support/help

books/pamphlets

from

social

connectors
Familial stigma

Health

Health

discussion spaces for

promotion

targeting friends

families

targeting

Workshop

and
in

communities/religious

families

organisations.

friends

promotion

Health
promotion
targeting

and
at

religious leaders

the

interpersonal
level
Community
stigma

Community

Use of

Social marketing

discussion fora in

media

in

community groups

stimulate

with social group

and

discussions

discussions

organisations. Use

about HIV and

community,

of

stigma.

institutional and

ambassadors

religious spaces.

change

Community

Film

mobilisation,
Mobilisation

of

resources

for

formation

and

operationalization of
HIV support groups

shows,

collaboration
in

religious
HIV

Social
to
social

to
public

opinion about HIV

related stigma
Structural
stigma

Training

of

health

Locate

HIV
within

Legislation
protect

to
PLWHA

Advocacy

for

political support,

care staff and other

services

commercial staff.

mainstream

from prejudice and

mainstreaming

hospital services

discrimination.

of HIV and anti-

Formation
Disability

of
and

stigma
processes

in

Diversity Agency to

religious,

protect PLWHA.

government and
commercial
institutions

250

Findings from this PhD study suggest that where the nuclear family may be unwilling
or unable to support the HIV positive patient as they access treatment, the extended
family networks may be employed. The familial social connection was shown to be a
crucial strategy for coping with the emotional and physical distress of being labelled
as HIV positive. HIV positive persons are able to identify a particular person in the
nuclear or extended family who they think may be supportive. Familial strategies
may also be complemented by strategies within the community as families are
influenced by the community in which they find themselves.
As argued in chapter 5 and evidenced by the following quote, the presence of
support groups is vital in assisting people in overcoming stigma and access ARV
therapy.
Yeah. When Iwhen I tested positiveAfter counselling I tested positive. In fact, I
felt it. The impact was so much on me. It really wants to have an effect on me. But
gradually, with the help of support groups and friends around, and Im somebody
who reads a lotSo, from there, I learn a lot. Like how to live positive. How to
manage yourself and the like. The kind of food, you will eat. And then em, the kind of
activities you should be involved in and what you should avoid. So, in fact, it helped
me a lot. Especially my support group. My support group. (Beatruce, 44 year old
construction worker)
My social connections to the HIV support group made it easier for me to have access
to the research participants. Through the organisation of meetings, the members of
the HIV support groups are able to have access to information on how to live
healthily and on how to access ARV therapy. As most of the participants of this study
are members of HIV support groups, it is probable that they are more knowledgeable
about the different HIV terminologies and social issues relating to ARVs compared to
a group of HIV patients that dont belong to HIV support groups.

251

As a result of the importance of HIV support groups and the social bridging role they
could potentially play, linking the community to the health care system, they may be
supported with financial and educational resources as well as technical support from
the State, international charities or international development organisations.
Strategic alliances between HIV support groups, primary health care centres, private
clinics and ARV centres may assist in supporting patients to access ARV therapy.
The media has a powerful influence on HIV stigma. As highlighted in chapter 4, one
of the male participants acted as a HIV ambassador by going on air to disclose his
status. As a result of this he experienced discrimination and was ostracised from his
community group.
And emI think at some point in my life, I have been stigmatised even in the club
that I belonged to. In January 2005, I was elected the president of a community
youth club and in Feb. 7th 2007, I tested positive to HIV. But I never disclosed my
status to my club members until I went on air. So, when they saw me on TV, on
newspaper, they were very mad and they came back and said that I have to resign
or face impeachment procedures. So, it was traumatising. (Viktor, 29 year old social
worker/activist)
As argued in chapter 4, Sontag (1991) suggests that visual imageries of AIDS being
linked by the media with death and criminality exacerbates HIV stigma. Nonetheless,
the influence of the media may be harnessed to tackle stigma and improve access to
ARVS. Lapinski and Nwulu (2008), using an experimental design in Abuja Nigeria,
demonstrate that a short film can have a significant impact on reducing HIV- related
risk and stigma perception. Babalola et al. (2009) also demonstrate that the media in
Nigeria has a significant effect in transforming HIV stigmatised attitudes and
behaviour against PLWHA. Mainstreaming of HIV messages in popular films and
dramas may be important in reducing HIV stigma. Personal experience suggests that
Nigerian produced Nollywood movies are very popular in parts of Africa and may be
useful in influencing social opinions and attitudes regarding stigma and HIV.

252

In combination with other social strategies, the media may also be a useful tool in
transforming gender norms. More research is needed to determine how this can be
done effectively in the Nigerian context. In this PhD study, it was discovered that
more women tended to access ARV services than men. More women also belonged
to HIV support groups than men. Some of the research participants suggested that
there is need for more involvement of men in HIV programmes. In this study, most of
the participants disclosed their HIV status to their marital partners for support. As
Campbell et al. (1999) suggests, women tend to access local social networks for
emotional support in contrast to men who tend to rely only on close relatives. As they
argue, it appears that women are more comfortable in sharing confidences and
networking in social spaces than men. Transforming gendered norms in Nigeria is
challenging because of entrenched traditions that are difficult to change.
Since leaving the research field, I have learnt that members of the HIV support
groups use social media to consolidate their social connections and build new ones.
Using social media, social discussions may be undertaken online about stigma and
social movements may be mobilised to support people living with HIV/AIDS. As Ben
Fogg (Professor of social media at Stanford University) argues, computers may be
used as persuasive social actors to influence behaviour. He suggests that the social
media and mobile phones will be instrumental to changing social behaviour in the
future (Fogg 2002, Stanford Persuasive Tech Lab. 2010). Social media such as
YouTube, Facebook and Twitter may be used to provide information on how patients
can obtain treatment. Nigeria has one of the largest growing blackberry markets,
partly because of the free blackberry messenger feature that allow individuals to
build social connections and transmit information. (Crackberry 2013).
More research is needed on how these new media tools may be harnessed to
reduce stigma and improve health care access. Although these social strategies are
important in influencing stigma, they are modified by the structural environment in
which they exist.

253

7.1.4 Reflection on structural issues

More research is required to operationalize how these structural strategies may be
implemented in the Nigerian context. In the next section, I discuss on possible ways
in which social connections may be useful in structural issues that surround stigma
and access to ARVs.
As discussed in chapter 4, institutional and organisational stigma exists in Nigerian
institutions. Social discussions regarding HIV and stigma may be undertaken through
workshops where different stakeholders can share their feelings about HIV and
stigma. Morolake et al. (2009) suggest that greater involvement of people living with
HIV in the formulation of ARV access programmes may result in better responses as
the fears and needs of patients living with HIV are taken into consideration during
programme planning and evaluation. Within hospital settings, patients may be
involved in providing feedback and suggestions as to how their care should be
delivered. However, these may be challenging with constraints in the number of
health care workers and other competing priorities such as providing clinical care.

As discussed in chapter 6, religious leaders/institutions are important social

connectors who were found to influence stigma and access to ARVs. The findings of
this research suggest that religious organisations are important in sign posting
people to where they can access ARVs. As Akani et al (2005) and Aja et al., (2010)
argue, religious organisations in Nigeria are in a good strategic position to facilitate
access to HIV testing and treatment. As argued in chapter 4 and 6, interviewees in
this research suggest that people will be more likely to access ARV treatment if
encouraged by their religious leaders. As Gillies (1998) demonstrates, strategic
partnerships and alliances are needed for successful health programmes. Similarly,
Saddiq et al (2010) argue that health care systems need to develop partnerships
with religious leaders in order to deliver behaviour change strategies and improve
health. However, there are challenges in identifying which religious organisations to
partner with and how these partnerships may work. It may also be challenging
partnering with religious organisations that advocate stopping of ARVs when patients
feel better. Nevertheless, improved links between religious organisations and the

254

health care system may potentially lead to less judgemental counselling and better
support for HIV positive persons who test positive during premarital testing.
In chapter 6 it was also demonstrated from the data that poverty is a major driver of
HIV

in

resource

poor settings.

Onyeneho

(2009) argues

that

economic

empowerment of the vulnerable (such as commercial sex workers) is necessary for

the spread of HIV to be curbed. It may motivate patients to access ARVs. For
example, as discussed in chapter 6, providing financial incentives to cover incidental
costs of transportation, feeding and accommodation led to increased ARV access
rates in Bayelsa State, Nigeria. Based on its analysis of ARV access work being
done in 12 countries from Africa and South America, the Catholic Overseas AID
Agency (CAFOD 2008) suggests that for ARV access programmes to be effective,
provision of medication must go hand in hand with economic empowerment activities
(such as microcredit schemes). Similar strategies of providing financial initiatives to
patients have been successfully implemented by Rotarian Action Group for
Population Growth and Development in Nigeria. This led to increase in uptake of
reproductive health care services in the project hospitals (Yoder 2012, Rotary
International 2012).
Feedback from participants of this PhD study suggest that empowerment of HIV
positive individuals through education and provision of jobs may be useful in building
up their self esteem and may assist in reducing self stigma. However, possible
unintended outcomes may include people purposely becoming HIV positive so they
can access welfare grants. Other HIV negative patients may also be unhappy as to
why only HIV positive patients are receiving grants. In the absence of financial
support from government bodies, participants of this study relied on social
connections of family members and friends to provide money for them to access
ARV therapy. Some relatives also provided accommodation for patients that needed
to travel from far to access their ARV therapy. Hence, in the absence of other forms
of support social capital is an important resource has been drawn upon to tackle the
challenges of accessing ARVs in Nigeria.

255

Some of the research participants of this study felt that there is a need for the
promulgation of anti-discrimination legislation to protect HIV positive patients. As
Jimmy (one of the research participants), suggests, the absence of antidiscrimination legislation provides a structural environment in which discrimination of
HIV persons continues to thrive.
honestly, honestly, honestly, zero level. Because like up till now, we would have
been thinking that this our own office would have passed a bill for anti-stigma this
thing so that the HIV people will have ground. You find out that up till now in some
ministries and parastatals, HIV now is a criteria that if you are tested HIV positive, no
job for you.(Jimmy, 37 year old unemployed graduate)
Legislation to protect PLWHA from discrimination in the workplace, hospital, religious
institutions, family, community and health care centre in combination with other
strategies may be useful in tacking HIV stigma. However, legislation alone may not
be enough to bring about social change. With bureaucratic bottlenecks, slow legal
processes and absence of a National anti-discrimination agency, it may be
challenging for the Nigerian legal system to cope with monitoring and enforcing
these legislations.
On reflection, I feel that I realise that HIV stigma is a complex issue with no easy
solutions. I feel that I have been transformed by the PhD research process. From
coming to the UK with the aim of learning Western concepts and simply adapting
them to the Nigerian context, my beliefs have been challenged. There are no straight
forward, easy solutions to social problems. My use of the Grounded Theory
Methodology suggests that understandings of social problems may be approached
with frameworks developed from the local context. My beliefs that the health care
systems in the Western world are without problems have also been challenged. I
now realise that all health care systems have problems. I realise that I may not be
able to solve all the problems of society but can make a useful contribution through
research. I have learnt to be comfortable as a qualitative researcher. The research
process has equipped me with skills in qualitative analysis (specifically Grounded
Theory) and use of Nvivo computer assisted qualitative data analysis software. I
have also learnt to be a work as a team player who is able to liaise with supervisory
256

team members in the UK and Nigeria. As stated earlier in Chapter 3, I will now make
use of evidence based practice my future career.
The research has also stimulated me to tap into the rich social capital that I have
globally in reaching my career goals.

I have drawn on my professional social

connections (colleagues, staff and students) for support in undertaking the task of
the PhD. I have also relied on my familial and religious social capital for support in
the PhD process. My religiosity provided me with faith to not give up but rather to
keep pressing forward in the inspiring journey of the PhD process. On reflection, I
feel that resilience and persistence are important virtues to have when engaging in
the PhD study. My passion in fighting HIV/AIDS and discrimination has been
channelled through writing this thesis, publications and making conference
presentations. However, I understand that there are limitations to what research
studies can do to in addressing social problems.

7.2 Conclusion
This research on access to ARVs has allowed me to understand the complex social
realities that surround the provision of HIV treatment in Nigeria. From my frustrations
as a clinician seeing patients die because they could not have access to ARVs to my
current

position

where

can

see

the

global,

institutional

and

social

interactions/challenges that affect the way people access HIV therapy, I have been
able to examine the detailed processes that put barriers in the way of people
accessing ARV therapy.
Potential pathways that patients pass through to access ARV therapy in Nigeria have
been discussed with suggestions that multi level approaches may need to be
employed in ARV access programmes for them to be effective. In this research it has
been argued that with increased global funding, access to ARVs is improving in
Nigeria but stigma still poses an important barrier in Nigeria, with the potential to be
addressed through the use of social connections.

257

Although HIV stigma is a complex issue with no simple solutions, the use of social
connections was demonstrated by research participants to be utilised in tackling
different types of stigma. Even in the face of poverty, social capital is an important
resource that exists in Nigeria that may be drawn upon to enable people to
overcome HIV stigma. The presence of structural drivers that influence ARV access
influences the way in which social connections are formed and the processes by
which they are used to facilitate access to ARVs in Nigeria. However, these social
resources (such as social networking) may be harnessed in structural interventions,
although more research is needed to identify how they may be harnessed and what
possible unintended consequences may exist. If the current global alliance to provide
free or subsidized ARVs ceases as a result of global financial constraints or changes
in political will, access to ARVs may become more challenging in Nigeria. However,
access to ARVs in Nigeria may continue to improve if socio cultural issues such as
stigma are addressed and the current global alliance to provide ARVs to Africa
endures.

258

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Appendices

Appendix 1 Interview guide used in research

When were you diagnosed as having HIV?

1. Are you aware of anti-retroviral ARV therapy?

2. Are you currently on ARV therapy?

3. If yes, for how long have you been on ARV therapy?

4. If not on ARVs kindly tell me why you are not on ARV therapy?

5. Kindly tell me your experience with regard to trying to access ARV therapy.
(Probe on barriers, facilitating factors and strategies for accessing ARV therapy)

6. Kindly, tell me about your family and people closest to you during the time of your illness
(probe on attitudes towards illness and shaping decisions to access treatment).
7. What has been your experience with community organisations with regards to access to ARV
therapy? (Probe for association of PLWHA, National Action Committee on AIDS).

8. What has been your experience with health care workers as you try to access ARV therapy
from the health facility?( probe from social worker, pharmacist, nurse, medical doctor).

9. Are you or have you been subject to unfair treatment or discrimination because of your HIV
status at community, work or health facility?

10. What has been your experience with other members of the community regarding access to
ARV therapy?

11. Where do you seek ARV therapy from now? (probe on distance and effect on accessing
ARVs)

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12. Does culture influence your ability to access ARV therapy?(probe on cultural beliefs and
practices and effect on ARV access)

13. Are there issues in the society that affect your ability to access ARV therapy? (probe for
religion, gender, politics, economics/financial factors and stigma)

14. Do you have any other comment to make with regards to access and ARV therapy?

Thank you very much for taking time to answer the questions. The knowledge gained is invaluable.

Socio demographic features

Age:

Sex:

Marital Status:

Ethnicity:

Highest educational attainment

Other type of education

Occupation

Location; urban

rural

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Appendix 2 Information Sheet

Information Sheet
My name is Kingsley Oturu. I am a research student from the Institute for International
Health and Development at Queen Margaret University College in Edinburgh, Scotland,
United Kingdom. I am undertaking a research project for a PhD project in international
health. The title of my project is: The factors that affect access to anti-retroviral drugs in
Nigeria

The findings of this study will be relevant in providing information on the influence of sociocultural factors on access to anti-retroviral drugs. It will provide insight on how these drugs
can be made more accessible in resource poor settings

My PhD programme is being funded by Queen Margaret University, Edinburgh Scotland.

I am looking for Key informants from the association of People living with HIV who have tried
to access anti-retroviral treatment to participate in the research. In the research we aim to
have adequate representation of male and female genders.

If you agree to participate in the study, you will be asked to provide some information by way
of an interview. The semi-structured interviews should take no longer than an hour. You will
be free to withdraw from the study at any stage and you would not have to give a reason.

All data will be anonymised as much as possible. Transcripts from the interviews will be
stored carefully and destroyed within a short time after the study is completed. The results
may be disseminated in book publications, journals or conference presentations.

If you would like to contact an independent person, who knows about this project but is not
involved in it, you are welcome to contact Dr Carola Eyber. Her contact details are given

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below. Please fell free to contact either the researcher or independent adviser if you have
any further questions.

If you have read and understood this information sheet and give your consent to participate
in the study as above, please contact me to proceed. Thank you very much.

Contact details of the researcher

Name of researcher:

Address:

Dr Kingsley Oturu

Institute for International Health and Development

Queen Margaret University, Edinburgh, EH21 6UU

Email / Telephone:

Koturu@qmu.ac.uk / 0131 4740000

Contact details of the independent adviser

Name of adviser:

Dr Carola Eyber

Address:

Institute for International Health and Development

Queen Margaret University, Edinburgh, EH21 6UU

Email / Telephone:

CEyber@qmu.ac.uk/ 0131 4740000

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Appendix 3 Consent Form

Consent form
The factors that affect access to anti-retroviral drugs in Nigeria
I have read and understood the information sheet and this consent form. I have had an
opportunity to ask questions about my participation.
I understand that I am under no obligation to take part in this study.
I understand that I have the right to withdraw from this study at any stage without giving any
reason.
I agree to participate in this study.
Name of participant:

_____________________________________

Signature of participant:

_____________________________________

Signature of researcher:

_____________________________________

Date:

_________________

Contact details of the researcher

Name of researcher: Kingsley Oturu
Address:

PhD Research Student ,

Institute for international health and development
Queen Margaret University
Edinburgh EH21 6UU

Email / Telephone:

koturu@qmu.ac.uk / +44 (0)131 474 0000

313

Appendix 4 Ethical approval letter from Queen Margaret

University

314

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Appendix

Publications/conference

presentations

linked with research

Publication in international journal
Oturu, K. 2011. Stigma in access to ARVs in Nigeria: The importance of social
connections. Grounded Theory Review

Poster presentation (Switzerland):

Structural levels of Stigma in access to anti retroviral therapy in resource poor

settings. Presented at the First Global Symposium of Health Systems Research,
Montreaux, Switzerland (16th-19th November 2010) Title number 80361 Page 416 on
Poster Abstract Publication. Organised by the World Health Organisation

Oral presentations:

World AIDS Day Presentations (UK)

Organisational issues and access to ARVs in Nigeria. Organised by the

IMPACTAIDS and Waverly Care on December 1st 2006
Access to anti-retroviral treatment in Nigeria. Organised by the World AIDS
Organisation on December 1st 2007

Queen Margaret University PhD conferences (UK)

The central role of organisational Pseudostigma on access to Antiretroviral drugs

(ARVs): Preliminary findings from a grounded theory study. Presented at the first
QMU Graduate School Conference. November 25th 2009

Stigma in access to HIV treatment in Abuja Nigeria: The importance of social

connections: presented at the Real world Research Conference. Presented on the
25th of November 2010

Kwalon Conference in the 1etherlands (The 1etherlands)

The use of Nvivo8 in a grounded theory research on access to anti-retroviral

treatment in resource poor settings. Presented at the Computer assisted qualitative
data analysis software conference, Utretch, The Netherlands, held on the 22nd and
23rd of April 2011

Health and education seminar on Gender and HIV (1igeria)

Factors that affect access to anti-retroviral treatment in Nigeria Organised by the

Prevention and Control of AIDS/STDS Foundation and Queen Margaret University at
Ibro Hotel, Nigeria. On June 3rd 2009

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1ational Hospital Abuja, 1igeria

The role of donor agencies in combating HIV/AIDS in Nigeria with focus on research
and treatment. Presented during the National Association of laboratory scientists
conference at the National Hospital Abuja. May 2009.

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