Exploring the lived experiences of adolescents living with vertically acquired HIV by PRETTY ...

139 Pages·2015·1.43 MB·English

Exploring the lived experiences of adolescents living with vertically acquired HIV

by

PRETTY PATIENCE JENA

submitted in accordance with the requirements for
the degree of

MASTER OF ARTS IN SOCIAL BEHAVIOURAL STUDIES in HIV/AIDS

at the

UNIVERISTY OF SOUTH AFRICA

SUPERVISOR: DR K C MOTHA
DECLARATION

I, Pretty Patience Jena (Student no: 50809148) hereby declare that EXPLORING
THE LIVED EXPERIENCES OF ADOLESCENTS LIVING WITH VERTICALLY
ACQUIRED HIV a dissertation of limited scope submitted in partial fulfilment of the
requirements for the Master’s Degree in Social Behavioural Studies in HIV/AIDS to
the University of South Africa is my own independent work and has not been
previously submitted for any other degree or examination at any other university.

----------------------------------
Pretty Patience Jena

Date: 26 February 2014

i
ACKNOWLEDGEMENTS

I wish to express my sincere and heartfelt gratitude to the following people whose
guidance and support have contributed to the completion of this dissertation.
 First and foremost to the Almighty God and Saviour for granting me the
strength, courage and determination. He invested in me the perseverance that
I needed to press on and complete my studies.
 My deepest thanks to the adolescents that took part in the study as without
them I would not have gathered this wealth of information that they provided
me for this study.
 To Dr K.C Motha, my supervisor. For her professional guidance, motivation,
support and endless patience in directing the course of this study.
 My mother, for her continuous prayers, support and encouragement.
 And finally to my family, friends and colleagues for the motivation, inspiration
and interest.

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ABSTRACT

This qualitative study explored the lived experiences of adolescents living with
vertically acquired HIV receiving treatment, care and support services at Dora
Nginza Wellness clinic, in Port Elizabeth, South Africa.

Six adolescents living with vertically acquired HIV (four females and two males)
between the ages of 16-17 years participated in in-depth semi-structured open-
ended individual interviews. Tesch’s (1990) method of data analysis for qualitative
research was used to analyse the interviews.

Adolescents that participated in the study spoke widely about the outlook on their
illness and their lives both in the past and present. They depicted fear, anxiety, pain
and sadness in their lived experiences. They were anxious about their own death
and had experienced illness and death of parents, siblings and close relatives due
to HIV and AIDS. They described painful and traumatic life events related to their
illness which included knowing their own HIV status and severe health problems
and hospitalisations. They all learnt about their HIV status in early adolescence and
choose not to disclose their status to people outside the family due to fear of
rejection, stigma and discrimination. Taking ARVs was challenging to the
participants due to side effects and strict medication schedules. Their school
attendance and performance was affected by their illness. Family was an important
resource of support. The participants had good experiences of HIV treatment at the
Wellness clinic.

The findings suggest that adolescents living with vertically acquired HIV faced a
number of challenges in dealing with their disease and its treatment. They need
intensive care and support services that enhance their positive self, facilitate self-
disclosure and decrease and discourage stigma and discrimination at school and
within their communities.

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TABLE OF CONTENTS

DECLARATION i
ACKNOWLEDGEMENTS ii
ABSTRACT iii
TABLE OF CONTENTS iv
LIST OF TABLES viii
LIST OF ACRONYMS AND ABBREVIATIONS ix

CHAPTER 1: SITUATING THE RESEARCH PROBLEM 1
1.1 Introduction and background of the study 1
1.2 Research problem 2
1.3 Rational of the study 4
1.4 Aim of the study 5
1.5 Objectives of the study 5
1.6 Research questions 5
1.7 Study context 5
1.8 Research methodology 6
1.9 Trustworthiness of the study 6
1.10 Ethical considerations 7
1.11 Definition of key terms 7
1.12 Overview of chapters 8

CHAPTER 2: LITERATURE REVIEW 9
2.1 Introduction 10
2.2 Adolescents living with HIV in sub-Saharan Africa 10
2.3 Adolescents living with vertically acquired HIV 11
2.4 Adolescence and HIV and AIDS 12
2.5 HIV status disclosure to children and adolescents living with vertically 15
acquired HIV
2.5.1 Adolescents disclosure of their HIV status 19
2.6 Mental health of adolescents living with HIV 21
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2.7 Sexual and reproductive health of adolescents living with HIV 23
2.8 Theoretical framework 26
2.9 Conclusion 31

CHAPTER 3: RESEARCH METHODOLOGY 32
3.1 Introduction 32
3.2 Research design 32
3.3 Population, Sample and Sampling techniques 34
3.3.1 Participant recruitment process 35
3.4 Data collection techniques 37
3.4.1 Data collection process 38
3.5 Data analysis 40
3.6 Ensuring trustworthiness 42
3.6.1 Credibility 42
3.6.2 Dependability 43
3.6.3 Conformability 43
3.6.4 Transferability 43
3.7 Ethical considerations 44
3.7.1 Avoidance of harm 44
3.7.2 Informed consent 45
3.7.3 Confidentiality 45
3.7.4 Debriefing of participants 45
3.7.5 Recording 45
3.8 Pilot study 46
3.9 Conclusion 46

CHAPTER 4: FINDINGS 48
4.1 Introduction 48
4.2 Biographical information of participants 48
4.3 Emerging themes from participants lived experiences 50
4.3.1 Theme 1: HIV infection 51
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4.3.1.1 Being sick 51
4.3.1.2 Fear of dying 53
4.3.1.3 Living with loss 54
4.3.2 Theme 2: Disclosure of HIV status 56
4.3.2.1 Knowing my HIV status 56
4.3.2.2 Keeping it a secret 61
4.3.2.3 Avoiding friendships 66
4.3.3 Theme 3: Copying with HIV 67
4.3.3.1 Family support 67
4.3.3.2 Visiting the Wellness clinic 69
4.3.3.3 Taking ART treatment 74
4.3.3.4 Going to school 77
4.3.3.4.1 Absenteeism from school 77
4.3.3.4.2 School pupils’ attitudes 78
4.3.3.4.3 Teachers attitudes 79
4.3.3.5 Sexual relationships 79
4.3.3.6 Future plans and aspirations 80
4.4 Care and support services appropriate for adolescents living 82
with vertically HIV
4.4.1 Scheduling monthly clinic visits after school hours or during 82
weekends
4.4.2 Facilitate adolescent peer support outside the Wellness clinic 83
4.4.3 Decrease and discourage stigma and discrimination 84
4.4.4 Support adolescents disclose their HIV status 85
4.5 Conclusion 85

CHAPTER 5: CONCLUSION 87
5.1 Introduction 87
5.2 Summary of findings 87
5.3 Limitations of the study 89
5.4 Suggestions for further research 90
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5.5 Recommendations for policy and practice 90
5.6 Conclusion 92

REFERENCES 93

APPENDICES
APPENDIX A: Application for permission to conduct a research study 116
APPENDIX B: Guardian Information Sheet and Consent Form 119
APPENDIX C: Adolescent Information Sheet and Assent Form 122
APPENDIX D: Interview schedule 125
APPENDIX E: UNISA ethical clearance letter 126
APPENDIX F: Permission to conduct study 128

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LIST OF TABLES

Table 1: Summary of themes and sub-themes 51

viii
ACRONYMS AND ABBREVIATIONS

AIDS Acquired Immune Deficiency Syndrome
ALHIV Adolescents Living with HIV
ART Anti-Retroviral Treatment
HAART Highly Active Anti-Retroviral Therapy
HIV Human Immunodeficiency Virus
PLHIV People Living with HIV
SEM Social Ecological Model
SRH Sexual Reproductive Health
SSA Sub-Saharan Africa
UK United Kingdom
UNAIDS the Joint United Nations Programme on HIV and AIDS
USA United States of America
WHO World Health Organisation

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