illness experiences of people living with hiv in kenya: a case study of kisumu county

277 Pages·2015·2.23 MB·English

ILLNESS EXPERIENCES OF PEOPLE LIVING WITH HIV IN
KENYA: A CASE STUDY OF KISUMU COUNTY

Dissertation Submitted in Fulfilment of the Requirements for the Degree of Doctor
of Philosophy (Public Health) to the School of Public Health,
University of Bielefeld, Germany.

Submitted by:

George Evans Odero Owino, M.A. (Medical Sociology)

Dissertation Supervisors:

First Supervisor: Priv.-Doz. Dr. med. Dr. PH habil. Reinhard Bornemann
Senior Lecturer, School of Public Health, University of Bielefeld, Germany
Consultant, Bielefeld Clinical Centre, Germany

Second Supervisor: Prof. Dr. med. Alexander Krämer
Head of Department, School of Public Health
University of Bielefeld, Germany

Bielefeld, February 2015.
DECLARATION

School of Public Health
University of Bielefeld, Germany
Doctor of Philosophy (PhD), in the Discipline of Public Health

I, the undersigned, declare that this dissertation is the result of my independent and
original investigation and that it has not been submitted in substance for any other degree,
nor is it concurrently being submitted in candidature or achievement of any other degree
at any other University.

Reference to, quotation from and discussion of the work of any other authors have been
correctly acknowledged and cited within the dissertation. Any errors and omissions are
however the responsibility of the author.

Ich erkläre hiermit, dass Ich die vorliegende Dissertation selbst angefertigt habe und keine
anderen als die angegebenen Quellen und Hilfsmittel verwendet habe. Alle Textstellen,
die dem Wortlaut nach anderen Quellen entnommen sind, habe ich unter Angabe der
Quellen als Zitat gekennzeichnet.

Signed: _____________________________ Bielefeld, Date: ___________________
George Evans Odero Owino

.

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DEDICATION

To the God and Father of our Lord Jesus Christ
who hath blessed us with all spiritual blessings in heavenly places in Christ.

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TABLE OF CONTENTS
DEDICATION......................................................................................................................... iii
TABLE OF CONTENTS ........................................................................................................ iv
LIST OF TABLES ................................................................................................................... xi
LIST OF FIGURES ............................................................................................................... xii
ABBREVIATIONS AND ACRONYMS ............................................................................. xiii
ACKNOWLEDGEMENTS .................................................................................................. xiv
ABSTRACT ............................................................................................................................ xvi
STRUCTURE OF THE DISSERTATION .......................................................................... xix
1 BACKGROUND ................................................................................................................ 1
1.1 Chapter Overview ................................................................................................. 1
1.2 About Health and Illness ....................................................................................... 1
1.3 Theoretical Framework ......................................................................................... 4
1.3.1 Symbolic Interaction Theory .................................................................................... 4
1.3.2 Applicability of Symbolic Interaction Theory .......................................................... 6
1.3.3 Illness Trajectory Model ........................................................................................... 7
1.3.4 Applicability of the Illness Trajectory Model .......................................................... 9
1.4 Epidemiology and Dynamics of HIV/AIDS ....................................................... 11
1.4.1 Global HIV Statistics .............................................................................................. 11
1.4.2 Sub-Saharan African HIV Statistics ....................................................................... 11
1.4.3 Kenyan HIV Statistics ............................................................................................ 12
1.4.4 Health indicators and Health System in Kenya ...................................................... 14
1.5 How PLHIV learn about and make Sense of HIV .............................................. 15
1.5.1 How PLHIV learn about their Status ...................................................................... 16
1.5.2 Initial Reactions to a HIV-Positive Diagnosis ........................................................ 18
1.5.3 How PLHIV reconcile to and accept a Positive HIV Status .................................. 21
1.6 Effects of HIV on the Lives of PLHIV ............................................................... 23
1.6.1 Effects on Social Relationships .............................................................................. 24
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1.6.2 Effects on Capacity to fulfill Social Obligations .................................................... 26
1.6.3 Effects on Perceptions of Self ................................................................................ 28
1.7 Coping Strategies adopted by PLHIV ................................................................. 29
1.7.1 Taking care of Oneself ........................................................................................... 30
1.7.2 Disclosure of HIV Status ........................................................................................ 30
1.7.3 Faith and Religious Activities ................................................................................ 31
1.7.4 Support Groups ....................................................................................................... 32
1.8 Difficulties faced in Coping with a Positive HIV Status .................................... 33
1.8.1 Health Difficulties .................................................................................................. 33
1.8.2 Stigma and Discrimination ..................................................................................... 34
1.8.3 Negative Feelings and Worries about the Future ................................................... 35
1.8.4 Livelihood and Economic Insecurity ...................................................................... 35
1.9 Statement of the Problem .................................................................................... 36
1.10 Public Health Relevance of the Study ................................................................. 37
1.11 Chapter Summary ................................................................................................ 42
2 MATERIALS AND METHODS .................................................................................... 43
2.1 Chapter Overview ............................................................................................... 43
2.2 Objectives and Research Questions of the Study ................................................ 43
2.2.1 Objectives ............................................................................................................... 43
2.2.2 Research Questions ................................................................................................ 43
2.3 Epistemological Considerations .......................................................................... 44
2.3.1 Epistemological Approach of the Study ................................................................. 44
2.3.2 Research Methodology ........................................................................................... 47
2.3.3 Research Design—Hermeneutic Phenomenology .................................................. 48
2.4 Data Collection Methods ..................................................................................... 50
2.4.1 In-depth Interviews ................................................................................................. 50
2.4.2 Focus Group Discussions ....................................................................................... 51
2.4.3 Key Informant Interviews ....................................................................................... 52
2.5 Study Site and Population ................................................................................... 53
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2.5.1 Study Site................................................................................................................ 53
2.5.2 Study Population .................................................................................................... 53
2.5.3 Sampling Procedures and Sample Size .................................................................. 54
2.6 Field Research Preparation.................................................................................. 56
2.6.1 Exploratory Field Trip to Kenya ............................................................................ 56
2.6.2 Research Authorization and Ethical Clearance ...................................................... 56
2.6.3 Informed Consent and Confidentiality ................................................................... 57
2.7 Field Research Process ........................................................................................ 58
2.7.1 Recruitment and Training of Research Assistants .................................................. 58
2.7.2 Recruitment of Research Participants ..................................................................... 59
2.7.3 Inclusion and Exclusion Criteria ............................................................................ 61
2.7.4 Setting for Data Collection ..................................................................................... 61
2.7.5 Rapport and Administration of the Tools ............................................................... 62
2.8 Data Recording, Transcription and Coding......................................................... 63
2.8.1 Data Recording ....................................................................................................... 63
2.8.2 Data Transcription .................................................................................................. 63
2.8.3 Data Coding ............................................................................................................ 64
2.9 Data Analysis, Interpretation and Presentation ................................................... 67
2.9.1 Data Analysis-The Hermeneutic Method ............................................................... 67
2.9.2 Explaining Themes and Patterns ............................................................................ 70
2.9.3 Presentation of Research Findings ......................................................................... 72
2.10 Outline of the Research Process .......................................................................... 72
2.11 Chapter Summary ................................................................................................ 74
3 RESULTS PART I: BEING DIAGNOSED HIV POSITIVE ..................................... 75
3.1 Chapter Overview ............................................................................................... 75
3.2 Participants Socio-economic and Demographic Characteristics ......................... 75
3.3 Circumstances of Knowing HIV Status .............................................................. 77
3.3.1 Personal Illness ....................................................................................................... 78
3.3.2 Illness or Death of Spouse ...................................................................................... 79
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3.3.3 Antenatal Care ........................................................................................................ 80
3.3.4 Public Health Campaigns ....................................................................................... 81
3.4 Facilities where Status was known ..................................................................... 82
3.5 How Long Status has been known ...................................................................... 83
3.6 Decision-making for Testing ............................................................................... 84
3.6.1 Decision made by Self ............................................................................................ 85
3.6.2 Decision initiated by Health Workers .................................................................... 86
3.6.3 Decision influenced by Family/Relatives ............................................................... 86
3.6.4 Decision influenced by Friends and Others ............................................................ 87
3.7 Initial Reactions to a Positive HIV Diagnosis ..................................................... 87
3.7.1 Acceptance of HIV Test Results ............................................................................ 88
3.7.2 Denial ..................................................................................................................... 90
3.7.3 Shock and Painful Feelings .................................................................................... 91
3.7.4 Notions of Death and Suicidal Thoughts ................................................................ 92
3.7.5 Other Emotional Reactions ..................................................................................... 94
3.8 Reconciliation to and Acceptance of a Positive HIV Status ............................... 96
3.8.1 Psychosocial Support and Role Modelling ............................................................. 97
3.8.2 Quest for Health and Longevity ............................................................................. 99
3.8.3 Normalization Strategies ...................................................................................... 101
3.8.4 Present and Future Well-being of Children .......................................................... 102
3.9 HIV Test-seeking Behaviour Model in Kisumu County ................................... 104
3.10 Chapter Summary .............................................................................................. 106
4 RESULTS PART II: EFFECTS OF HIV ON LIVES OF PLHIV ........................... 107
4.1 Chapter Overview ............................................................................................. 107
4.2 Effects on Social Relationships ......................................................................... 107
4.2.1 Stable Social Relationships .................................................................................. 108
4.2.2 Stigma and Discrimination ................................................................................... 109
4.2.3 Restructured Interaction Patterns.......................................................................... 112
4.2.4 Improved Social Relationships ............................................................................. 113
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4.3 Effects on Capacity to fulfil Social Obligations................................................ 114
4.3.1 Retained Capacity to fulfil Social Obligations ..................................................... 115
4.3.2 Regained Capacity to fulfil Social Obligations .................................................... 116
4.3.3 Diminished Capacity to fulfil Social Obligations ................................................. 118
4.4 Effects on Perception of Self ............................................................................. 119
4.4.1 Perceived Sense of disrupted Self ........................................................................ 119
4.4.2 Perceived Sense of stable Self .............................................................................. 122
4.4.3 Perceived Sense of restored/enhanced Self .......................................................... 123
4.5 Chapter Summary .............................................................................................. 126
5 RESULTS III: COPING STRATEGIES AND DIFFICULTIES FACED BY
PLHIV .................................................................................................................................... 128
5.1 Chapter Overview ............................................................................................. 128
5.2 Psychosocial and Emotional Strategies ............................................................. 128
5.2.1 Disclosure of HIV Status ...................................................................................... 129
5.2.2 Acceptance of Status and Enrolment into Care .................................................... 132
5.2.3 Stress Avoidance and Contentment with Life ...................................................... 134
5.2.4 Receiving Psychosocial Counselling .................................................................... 136
5.3 Faith and Religious Activities ........................................................................... 137
5.3.1 Faith in God .......................................................................................................... 138
5.3.2 Engagement in Religious Activities ..................................................................... 139
5.4 Social Strategies ................................................................................................ 140
5.4.1 Maintaining Active Social Engagement ............................................................... 140
5.4.2 Joining Support Groups ........................................................................................ 141
5.4.3 Changing Interaction Patterns .............................................................................. 143
5.5 Health Strategies ............................................................................................... 144
5.5.1 Adherence to Medication ..................................................................................... 144
5.5.2 Observing Clinical Appointments ........................................................................ 146
5.5.3 Reduction of use of Alcohol and Drugs ............................................................... 147
5.6 Livelihood Enhancement Strategies .................................................................. 148
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5.6.1 Carrying on with Life’s Activities ........................................................................ 148
5.6.2 Producing own Food and Ensuring good Nutrition .............................................. 149
5.6.3 Developing Income-Generating Activities ........................................................... 151
5.7 Adoption of Safe Sexual Behaviours ................................................................ 153
5.7.1 Cessation of the Pursuit of Pleasure ..................................................................... 153
5.7.2 Sexual Abstinence and Faithfulness to one Partner .............................................. 154
5.7.3 Reduction in Sexual Partners and Protected Sex .................................................. 155
5.7.4 Stopped Parking ................................................................................................... 157
5.7.5 Reasons for Change in Sexual Behaviours ........................................................... 158
5.7.6 Summary of Coping Strategies adopted by PLHIV ............................................. 159
5.8 Difficulties faced in Coping with HIV .............................................................. 160
5.8.1 Livelihood and Income-related Difficulties.......................................................... 160
5.8.2 Access to Food and Nutrition ............................................................................... 164
5.8.3 Stigma, Discrimination and Cultural Rites ........................................................... 165
5.8.4 Children’s Education and Well-being .................................................................. 167
5.8.5 Health-related Problems ....................................................................................... 168
5.9 Experiencing no Difficulties ............................................................................. 169
5.10 Chapter Summary .............................................................................................. 171
6 DISCUSSION ................................................................................................................. 172
6.1 Chapter Overview ............................................................................................. 172
6.2 Quality and Trustworthiness of the Study ......................................................... 172
6.2.1 Credibility ............................................................................................................. 173
6.2.2 Transferability ...................................................................................................... 174
6.2.3 Dependability ....................................................................................................... 175
6.2.4 Confirmability ...................................................................................................... 176
6.3 Strengths of the Study ....................................................................................... 176
6.4 Limitations of the Study .................................................................................... 178
6.5 Being diagnosed HIV Positive .......................................................................... 179
6.5.1 Circumstances of knowing HIV Status ................................................................ 179
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6.5.2 Decision making for Testing ................................................................................ 183
6.5.3 Facilities where Testing was done ........................................................................ 184
6.5.4 Initial Reactions to a Positive HIV Diagnosis ...................................................... 185
6.5.5 Reconciliation to and Acceptance of a Positive HIV Status ................................. 188
6.6 Effects of HIV on the Lives of PLHIV ............................................................. 191
6.6.1 Effects on Social Relationships ............................................................................ 191
6.6.2 Effects on Capacity to fulfil Social Obligations ................................................... 194
6.6.3 Effects on Perception of Self ................................................................................ 195
6.7 Coping Strategies adopted by PLHIV ............................................................... 198
6.7.1 Psychosocial and Emotional Strategies ................................................................ 199
6.7.2 Faith and Religious Activities .............................................................................. 201
6.7.3 Social Strategies ................................................................................................... 202
6.7.4 Health Strategies ................................................................................................... 204
6.7.5 Livelihood Enhancement Strategies ..................................................................... 205
6.7.6 Adoption of Safe Sexual Behaviours .................................................................... 208
6.8 Difficulties faced in Coping with a Positive HIV Status .................................. 209
6.8.1 Livelihood and Income-Related Difficulties ........................................................ 209
6.8.2 Access to Food and Nutrition ............................................................................... 209
6.8.3 Stigma and Discrimination ................................................................................... 210
6.8.4 Children’s Education and Well-being .................................................................. 211
6.8.5 Health Concerns ................................................................................................... 212
6.9 Chapter Summary .............................................................................................. 214
7 CONCLUSIONS AND RECOMMENDATIONS ...................................................... 215
7.1 Chapter Overview ............................................................................................. 215
7.2 Conclusions on Methodology ........................................................................... 215
7.3 Being diagnosed HIV Positive .......................................................................... 216
7.4 Effects of HIV on the Lives of PLHIV ............................................................. 219
7.5 Coping Strategies adopted by PLHIV ............................................................... 220
7.6 Recommendations for Public Health Policy and Programming........................ 222
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