Help-seeking behaviours of Black Africans and African

383 Pages·2014·5.43 MB·English

Help-seeking behaviours of Black Africans and African –
Caribbean People to diagnose HIV and AIDS

Concilia Ajuo

Submitted to the University of Hertfordshire in partial fulfilment of
the requirements of the degree of Doctorate in Health Research

September 2013
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Table of contents
TABLE OF CONTENTS 2
ABSTRACT 9
ACKNOWLEDGEMENTS 12
ABBREVIATIONS AND MEANING 13
INDEX OF TABLES 15
INDEX OF FIGURES 15
INDEX OF TEXT BOXES 15
CHAPTER ONE 16
INTRODUCTION AND BACKGROUND 16
1.1 INTRODUCTION 16
1.2 BACKGROUND 17
1.3 HIV SCREENING AMONG BLACK AFRICAN AND AFRICAN-CARIBBEAN POPULATIONS 21
1.4 STUDY RATIONALE 21
1.5 RESEARCH QUESTIONS 24
1. 6 AIMS AND OBJECTIVES 25
1.6.1 AIM 25
1.6.2 OBJECTIVES 25
CHAPTER TWO 29
LITERATURE REVIEW 29
2.1 INTRODUCTION 29
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2.2 PUBLIC HEALTH PERSPECTIVES ON HIV AND AIDS 29
2.2.1 GENERAL INFORMATION ON HIV AND AIDS 30
2.2.2 PUBLIC HEALTH DEFINITIONS OF HIV AND AIDS AND CLASSIFICATION 31
2.2.3 MODES OF TRANSMISSION OF HIV 33
2.2.4 STAGE OF HIV AND AIDS AT DIAGNOSIS 34
2.2.5 PERCEPTIONS OF RISKS AND HELP-SEEKING FOR HIV 37
2.2.6 UTILISATION OF OPPORTUNITIES FOR HIV TESTING 39
2.3 SOCIAL SCIENCE PERSPECTIVES OF HIV AND AIDS 40
2.3.1 THE CONCEPT OF ‘HELP-SEEKING’ 41
2.3.2 MODELS OF HELP-SEEKING 42
2.3.3 GENDER AND HELP-SEEKING 45
2.3.4 ETHNICITY AND HELP-SEEKING 48
2.3.4.1 Perspectives on Ethnicity 48
2.3.4.2 Ethnicity and Race 48
2.3.4.3 Definitions of black, black African, African, Afro-Caribbean 51
2.3.5 INFLUENCE OF HIV SYMPTOMS ON HELP-SEEKING 58
2.3.6 CHRONIC ILLNESS AND HELP-SEEKING 60
2.3.7 CULTURAL BELIEFS ABOUT ILLNESS CAUSATION 64
2.3.8 CULTURE 64
2.3.9 RESPONSE TO SYMPTOMS IN THE BLACK AFRICAN AND AFRICAN- CARIBBEAN CONTEXTS 68
2.3.10 LAY PERCEPTIONS OF HEALTH 70
2.3.11 LAY PERCEPTION OF HIV AND AIDS RISK 72
2.3.12 THE ROLE OF COMPLEMENTARY AND ALTERNATIVE THERAPY 75
2.3.13 HIV AND AIDS STIGMA 79
2.3.14 CONCLUSION 81
CHAPTER THREE 83
METHODOLOGY 83
3.1 INTRODUCTION 83
3.2 POSITIONING MYSELF IN THE RESEARCH: REFLECTIONS ON MY ‘INSIDER-OUTSIDER STATUS 86
3.3 THEORETICAL FRAMEWORK 89
3.3.1 SYMBOLIC INTERACTIONIST PERSPECTIVE 90
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3.4 RESEARCH DESIGN 91
3.4.1 RESEARCH SETTING 94
3.4.1.1 The hospital as research setting. 97
3.4.2 GAINING ACCESS 99
3.5 TARGET POPULATION AND RECRUITMENT 102
3.5.1 SAMPLING METHOD 105
3.5.2 SOCIO-DEMOGRAPHIC CHARACTERISTICS OF THE PARTICIPANTS 108
3.6 ETHICS APPROVAL PROCESS 110
3.7 THE INFORMED CONSENT PROCESS 111
3.8 DATA COLLECTION PROCEDURE 112
3.8.1 OTHER POSSIBLE METHODS 116
3.8.1.1 Focus Groups 116
3.8.1.2 Questionnaires 117
3.9 FINDING A SAFE SPACE FOR INTERVIEWING 119
3.10 MANAGING SOCIAL RELATIONS 122
3.11 DANGERS IN THE FIELD 123
3.12 DATA MANAGEMENT AND STORAGE 126
3.12.1 ANALYSIS 127
3.12.2 TRUSTWORTHINESS 129
3.13 SUMMARY 133
3.14 CONCLUSION 133
CHAPTER FOUR 135
PERCEPTIONS OF HIV AND AIDS 135
4.1 INTRODUCTION 135
4.2 KNOWLEDGE OF HIV AND AIDS 135
4.2.1 PARTICIPANTS’ KNOWLEDGE OF CAUSATION AND MODES OF TRANSMISSION OF HIV AND AIDS 135
4.2.2 KNOWLEDGE OF THE RELATIONSHIP BETWEEN HIV AND AIDS 137
4.2.3 ACCESS TO INFORMATION ON HIV AND AIDS 138
4.2.4 INFORMATION SOURCES AND SUPPORT FOR DIVERSITY OF LANGUAGE 139
4.3 PARTICIPANTS’ PERCEPTIONS OF HIV AND AIDS 143
4.3.1 PARTICIPANTS’ PERCEPTIONS OF THEIR SOURCES OF HIV AND AIDS INFECTION 143
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4.3.2 PERCEPTIONS OF HIV AND AIDS AS ‘AFRICANNESS’ 145
4.3.3 PERCEPTIONS OF HIV AND AIDS AS AN OUTCOME OF PROSTITUTION 145
4.3.4 PERCEPTION OF HIV AND AIDS AS AN OUTCOME OF CARELESSNESS 149
4.3.5 PERCEPTION OF HIV AND AIDS AS A DEATH SENTENCE 151
4.3.6 HIV AND AIDS AS A CHRONIC ILLNESS 152
4.3.7 PERCEPTION OF HIV AND AIDS AS LEPROSY 155
4.3.8 PERCEPTION OF HIV AND AIDS AS A CURSE AND PUNISHMENT 158
4.3.9 OTHER PERSPECTIVES 159
4.3.9.1 HIV AND AIDS AS POSITIVE EXPERIENCE 159
4.4 KNOWLEDGE ABOUT HIV AND AIDS BY ETHNICITY AND GENDER 160
4.4.1 KNOWLEDGE BY ETHNICITY 160
4.4.2 KNOWLEDGE ABOUT HIV AND AIDS BY GENDER 160
4.5 SUMMARY 161
4.6 CONCLUSION 161
CHAPTER FIVE 163
‘AFRICANNESS’ 163
5.1 INTRODUCTION 163
5.2 ‘AFRICANNESS’ 165
5.2.1 HIV AND AIDS AS ‘AFRICAN THING’ OR ‘AFRICAN ILLNESS’ 167
5.2.2 POLYGAMY AND MULTIPLE PARTNER RELATIONSHIP AS ‘AFRICAN WAY’ 171
5.2.3 ‘SILENCES’ AND ‘BROKEN NARRATIVES’ AS ‘AFRICANNESS’ 175
5.2.4 STRATEGIES FOR RECOVERING FROM A DISCREDITED STATUS 175
5.2.5 STRATEGIES FOR MANAGING INFORMATION 178
5.2.6 REJECTION AS ‘AFRICANNESS’ 182
5.2.7 PREJUDICE (BEING JUDGEMENTAL) AS ‘AFRICANNESS’ 184
5.3 IMPACT OF ‘AFRICANNESS’ ON HELP-SEEKING FOR DIAGNOSIS 185
5.4 COMPARING AFRICAN AND AFRICAN-CARIBBEAN PERSPECTIVES OF ‘AFRICANNESS’ 187
5.4.1 PERSPECTIVES ON MULTIPLE PARTNER RELATIONSHIPS AS AN ‘AFRICAN WAY’ BY ETHNICITY AND GENDER 187
5.4.2 SILENCES (BROKEN NARRATIVES) 191
5.5 SUMMARY 191
5.6 CONCLUSION 193
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CHAPTER SIX 194
PATHWAYS TO HELP-SEEKING FOR DIAGNOSING HIV AND AIDS 194
6.1 INTRODUCTION 194
6.2 TRIGGERS TO HELP-SEEKING 196
6.2.1 RESPONSE TO SYMPTOMS AND TREATMENT OPTIONS 196
6.2.2 HOSPITALISATION FOR SEVERE ILLNESS 200
6.2.3 RESPONSE TO HEALTH POLICY 203
6.2.4 RESPONSE TO PARTNER’S POSITIVE HIV STATUS 204
6.2.5 HEALTH PROMOTION AND SECONDARY PREVENTION PRACTICE (VOLUNTARY TESTING) 204
6.2.6 SEXUAL PRACTICES 210
6.3 IMPEDIMENTS (BARRIERS) TO HELP-SEEKING FOR DIAGNOSING HIV AND AIDS 211
6.3.1 FEAR OF THREATS TO CONFIDENTIALITY 211
6.3.2 STIGMA 212
6.3.3 LAY PERCEPTIONS ABOUT HEALTH AND ILLNESS 217
6.3.4 BARRIERS TO ACCESS TO HEALTH SERVICES 221
6.3.5 FACILITY LOCATION 221
6.3.6 AWARENESS OF HIV SERVICES 224
6.3.7 INFORMATION ACCESS 225
6.3.8 CULTURAL INCOMPETENCE 225
6.3.9 CLINIC OPERATION TIMES 227
6.3.10 COMPLEMENTARY AND ALTERNATIVE THERAPY 229
6.4 COMPARING THE PERSPECTIVES ON BARRIERS TO HELP-SEEKING TO DIAGNOSE HIV AND AIDS BY ETHNICITY AND
BY GENDER 232
6.4.1 COMPARING PERSPECTIVES BY ETHNICITY 233
6.4.2 COMPARING PERSPECTIVES BY GENDER 234
6.5 SUMMARY 234
6.6 CONCLUSION 235
CHAPTER SEVEN 236
UNDERSTANDING THE CONTRASTING PERSPECTIVES OF HIV AND AIDS INFECTION RISK AND HELP-
SEEKING AMONGST BLACK AFRICANS AND AFRICAN-CARIBBEAN PEOPLE IN LONDON 236
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7.1 INTRODUCTION 236
7.2 TAXONOMY OF HIV AND AIDS 237
7.2.1 UNDERSTANDING ‘THE AFRICAN THING’ AND ‘AFRICANNESS’ 238
7.3 CHALLENGES TO USING BIOMEDICAL TECHNOLOGIES BY BLACK AFRICAN AND AFRICAN-CARIBBEAN GROUPS 242
7.4 LOCATING COMPLEMENTARY AND ALTERNATIVE MEDICINE IN THE COURSE OF HELP-SEEKING 244
7.5 DISCLOSURE 246
7.6 CULTURAL COMPETENCE 247
7.7 RECONSTRUCTING THE UK HEALTH PROVISION TO INTEGRATE HIV AND AIDS SERVICES IN HEALTHCARE FACILITIES
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7.8 CONSTRUCTED IMAGES AND EVOLVING IDENTITIES 251
7.9 THE IMPLICATIONS OF CLAIMING AN HIV IDENTITY THROUGH ‘AFRICAN THING’ 252
7.10 USEFULNESS OF BROKEN NARRATIVES, BIOGRAPHICAL DISRUPTION AND BIOGRAPHICAL ABRUPTION 254
7.11 COMPARING THE HELP-SEEKING BEHAVIOURS OF BLACK AFRICANS AND AFRICAN-CARIBBEAN PEOPLE 257
7.11.1 SIMILARITIES IN HELP-SEEKING 258
7.11.2 DIFFERENCES IN HELP SEEKING BEHAVIOURS 260
7.12 COMPARING HELP-SEEKING BEHAVIOUR OF MEN AND WOMEN 261
7.12.1 SIMILARITIES IN HELP SEEKING BEHAVIOURS 262
7.12.2 DIFFERENCES IN HELP-SEEKING BEHAVIOURS 263
7.13 IMPLICATIONS OF FINDINGS FOR PROFESSIONAL PRACTICE 264
7.14 STRENGTHS, LIMITATIONS AND CHALLENGES 266
7.15 DIRECTIONS FOR FUTURE RESEARCH 269
REFERENCES 271
APPENDICES 312
APPENDIX 1: RESEARCH PARTICIPANTS CONSENT FORM 313
APPENDIX 2: RESEARCH PARTICIPANTS INFORMATION SHEET 314
APPENDIX 3: PARTICIPANT RECRUITMENT RESPONSE FORM 318
APPENDIX 4: LETTERS OF INFORMATION 319
APPENDIX 5: INTERVIEW GUIDE 322
APPENDIX 6: ETHICS APPROVAL LETTER 324
APPENDIX 7: RESEARCH GOVERNANCE APPROVAL 330
APPENDIX 8A: BLOCK AND FILE ANALYSIS – GROUP 1 – AW 331
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APPENDIX 8B: BLOCK AND FILE ANALYSIS - GROUP 2 – CW 336
APPENDIX 8C: BLOCK AND FILE ANALYSIS – GROUP 3 – CM 340
APPENDIX 8D: BLOCK AND FILE ANALYSIS – GROUP 4 – AM 349
APPENDIX 9: LETTERS OF ACCESS 354
APPENDIX 10: POTENTIAL PARTICIPANT LETTER OF INVITATION 355
APPENDIX 11A: MAXQDA2 ATTRIBUTES 356
APPENDIX 11B MAXQDA2 MEMOS 358
APPENDIX 11C: MAXQDA2 CODED SEGMENT 360
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Abstract
With the advent of Highly Active Antiretroviral Therapy (HAART), people with the human
immune deficiency virus (HIV) infection are increasingly enjoying longer and relatively
healthy lives, particularly in developed countries. However, black Africans and African-
Caribbean people in the United Kingdom and other developed countries are not yet enjoying
the full benefits of HAART, essentially as a result of delayed diagnosis. Delayed diagnosis,
in addition to affecting the health of infected individuals, also creates a community reservoir
for the spread of the infection; thereby hampering prevention and control strategies by
international and NHS guidelines. The delayed diagnosis may be grounded in individual,
societal and health service factors that guide help-seeking behaviours of black African and
African-Caribbean populations. This study set out to investigate the help-seeking behaviours
to diagnose HIV and AIDS among UK based black African and African-Caribbean people,
and to investigate the dynamics in those behaviours by place of origin (Africa vs. Caribbean)
and by gender.

A qualitative methodological approach involving semi-structured interviews was used to
explore help-seeking behaviours to diagnose HIV and AIDS among black Africans and
African-Caribbean populations in the UK and compared by gender. Thirty (30) purposively
selected individuals from patients attending two sexual health clinics in the city of London
were interviewed. These included 16 black Africans and 14 African-Caribbean people, and
16 men and 14 women. The symbolic interactionist perspective, and the concepts of broken
narratives/silences, biographical disruption and biographical abruption guided the study and
interpretation of findings.

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One main theme ‘Africanness’ and two sub-themes (“African way” and “African thing”)
emerged from the findings. The “African way” embodies the risk factors involved in
contracting or transmitting HIV and the “African thing” represents the HIV status itself. This
is a cultural construction of HIV and AIDS within the acceptable context of participants
which helped them to talk about HIV and AIDS without addressing it by the biomedical
idiom. The notion of ‘Africanness’ provided a ‘marker’ for African identity. The “African
thing” represented a new landscape for naming HIV without necessarily calling it by name
and provided a comfortable platform for participants to seek help. The “African way”
described the risk behaviours by participants that resulted in the “African thing”.

Three sociological concepts; ‘broken narratives or silences, biographical disruption and
biographical abruption were key issues in HIV and AIDS diagnosis at a late stage and have
formed the basis for the development of a model of help-seeking for diagnosis by
participants. Apparently, the main determinants of help-seeking for diagnosis of HIV and
AIDS are dependent on cultural factors. Stigma is reinforced by the national health care
system practices as well as health professionals themselves. This potentially increases the
reluctance among black African and African-Caribbean populations to voluntarily test for
HIV.

An HIV diagnosis is seemingly a challenging experience because of the impending
uncertainties associated with it. Seeking help for diagnosis may even be more difficult
because of the anticipated and unpleasant experiences along the path to diagnosis. This may
guide the individual to consider other alternatives outside the biomedical pathway,
potentially; the biomedical path becomes the least likely choice, especially with black
African and African-Caribbean populations. An insufficient cultural understanding is likely
to result in inadequate recognition of alternative medical practices, insufficient attention to
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