The lived experiences of pregnant women on antiretroviral treatment (Free State Province, South Africa) By Mosilo Mina Machere Dissertation submitted in accordance with the requirements for the degree MAGISTER ARTIUM: SOCIOLOGY In the FACULTY OF THE HUMANITIES (Department of Sociology) at the UNIVERSITY OF THE FREE STATE June 2017 Bloemfontein, South Africa Supervisor: Dr. Katinka de Wet (Department of Sociology, UFS) DECLARATION I, Mosilo Mina Machere, declare that the Master‟s degree research dissertation that I herewith submit for the Master‟s Degree qualification Magister Artium at the University of the Free State is my independent work, and that I have not previously submitted it for a qualification at another institution of higher education. ................................... June 2017 Acknowledgements I would like to express my sincere and heartfelt gratitude to the mothers who kindly shared their experiences with me. Without them I would not have gathered this wealth of information that they narrated for this study. Sincere appreciation to The Narrative Study of Lives programme for granting me the opportunity to study further and for financial assistance. Special thanks to my Supervisor, Dr. de Wet for her professional guidance, motivation, support and endless patience in directing the course of this study. She believed in me even when I did not believe in myself. To Naledi Gouws of Star Language Service, thank you for language editing of this dissertation. No words can express my deepest appreciation for the invaluable support from my family, particularly my sisters Dibuseng and Mampho, and to my son Tshepo. I remain grateful for their endless patience, encouragement and understanding throughout this journey. No tasks were too much for them to handle and no time was given begrudgingly. I simply could not have completed this process without them. This has been a persistent journey and a testament of resilience, for all this I am grateful to the Almighty God. iii SUMMARY The universal access of antiretroviral treatment (ART) in South Africa has bent the trajectory of the HIV epidemic. The lifelong HIV treatment has moved the disease from a terminal to a chronic and manageable disease. The redefinition has brought hope and normality to many people living with HIV. For HIV-positive women, the prevention of mother-to-child transmission (PMTCT) prophylaxis has influenced their intentions to bear children along with issues related to their reproductive options and prospects. Studies on the influence of HIV on pregnancy have largely been about the baby with limited focus on the lived experiences and perceptions of the expecting mothers. Conceptualising the lived realities of HIV-positive women during pregnancy and motherhood in the context of ART requires a deeper understanding of their experiences. Guided by both descriptive and interpretive lenses of phenomenology, this research approach allowed a more in-depth look into this phenomenon, thereby capturing the complexity of issues women faced from their points of view. The study aimed to explore the experience of pregnancy from the perspective of HIV-positive women who are on ART. It sought to discover the meanings embedded in their everyday lives. This included, among other things, appreciating what these women regarded as noteworthy in relation to their experiences and learning about the impact that the diagnosis of HIV, and its lifelong treatment had on their lives, both as patients and as care-givers. The objective of the study was thus to understand the experiences of HIV-positive women who were on ART, both their own embodied experiences as well as their experiences in relation to others; how they perceive the iv chronic character of HIV; and moreover to explore how they made sense of their experiences of pregnancy and motherhood. Eight Sesotho speaking participants from the Free State province, South Africa, were recruited. A purposive sampling method was used as only women who were pregnant and on ART were interviewed. The narratives of the lived realities were elicited through in-depth interviews. The face-to-face interviews were digitally recorded and guided by an interview schedule to allow flexibility and engage participants in dialogue while they were narrating their experiences. The data was analysed in the context of HIV diagnosis, pregnancy and ART. This was to elicit what it meant for women to contemplate pregnancy in a context of ubiquitous HIV and new hope in the form of ART; both available for them and their babies. The systematic analysis provided a greater understanding of factors influencing the taken-for-granted experiences of HIV-positive women on ART during pregnancy and motherhood. The content analysis of qualitative data revealed two broad themes related to lived realities of pregnancy on the one hand, and motherhood on the other in the context of ART. Narrating their experiences during pregnancy, sub-themes that emerged were more inclined to point towards the protection of the unborn baby and developing coping mechanisms; while during motherhood there was a shift from the babies‟ to the mothers‟ well-being and their life prospects. Considering the duration of being on ART and the number of pregnancies they have had, the narratives provided a platform to track how experiences such as baby v feeding practices, and coping with stigma and disclosure have ameliorated over time. This indicates how the landscape in which HIV-positive women experience pregnancy and motherhood has changed rather dramatically. The zeal for life displayed by these women bears testimony that HIV diagnosis no longer means that the prospect of death is the sole outlook on their lives and on the lives of their children. Keywords HIV and AIDS Prevention-of-mother-to-child-transmission (PMTCT) Pregnancy Antiretroviral treatment (ART) Motherhood Stigma Coping mechanisms Narrative approach Lived experiences Free State Province vi TABLE OF CONTENTS INTRODUCTION 1 CHAPTER ONE: THEORETICAL FRAMEWORK 5 1.1. Introduction 5 1.2. Rationale of the theoretical framework 5 1.3. Phenomenology of everyday life 6 1.4. Intersubjective life-world 8 1.5. Existentialism 12 1.6. Symbolic Interactionism 17 1.6.1. The Construction of meaning 19 1.6.2. Stigma 21 1.6.3. Motherhood 24 1.7. Conclusion 28 CHAPTER TWO: LITERATURE REVIEW 29 2.1. Introduction 29 2.2. Historical narrative of HIV in South Africa 30 2.2.1. Lack of Political Leadership 30 2.2.2. HIV Activism spawned by the Treatment Action Campaign 31 2.2.3. Scale-up of HIV Response 33 2.3. Reproductive Choices in the Era of HIV 34 vii 2.4. Prevention of Mother-to-Child Transmission of HIV 38 2.4.1. Antenatal Care 40 2.4.2. HIV Counselling and Testing 41 2.4.3. Breastfeeding 43 2.5. Pregnancy and HIV in a time of ART 45 2.5.1. Adherence to ART 46 2.5.2. Stigma and Disclosure 47 2.5.3. Motherhood bound to ART 50 2.6. Conclusion 52 CHAPTER THREE: METHODOLOGY 53 3.1. Introduction 53 3.2. Methodological Framework 53 3.3. Participants 56 3.4. Data Collection 62 3.4.1 Method 62 3.4.2. Interviews 63 3.5. Data Analysis 65 3.6. Ethical Considerations 67 3.7. Limitations of the study 68 3.8. Conclusion 69 CHAPTER FOUR: THE FINDINGS AND DISCUSSION 70 4.1. Introduction 70 4.2. The lived reality of pregnancy and ART 72 4.2.1. Protecting the baby 74 4.2.2. Disclosure and stigma 81 viii 4.2.3. Coping with pregnancy and ART 87 4.3. The lived reality of motherhood and ART 90 4.3.1. Sources of support 91 4.3.2. ART Adherence 94 4.3.3. Conceptions of the future 98 4.4. Conclusion 106 CONCLUSION 107 LIST OF REFERENCES 113 APPENDIX A: INFORMED CONSENT FORMS 125 APPENDIX B: INTERVIEW SCHEDULES 129 ix INTRODUCTION The ability to give birth and to mother is a privilege and an event that leaves an indelible mark on the lives of those women who undergo this experience. For many women, motherhood forms an integral part of who they are and their sense of fulfilment. For women infected with human immunodeficiency virus (HIV), just like for non-infected women, the desire and commitment to bear children are fortified by factors such as the survival of the baby (Smith and Mbakweni, 2007; Myer et al., 2010; King et al., 2011; Erhabor et al., 2012; Schwartz et al., 2012; UNAIDS, 2014). But for HIV-positive women on antiretroviral treatment (ART) the experience of pregnancy is greatly underscored by a cascade of health-related interventions they have to adhere to and follow in order to have an HIV-free baby. From this perspective, and being a mother myself, I have always been intrigued by the negotiation of being HIV-positive, on ART and motherhood. Moreover, my various encounters with HIV-positive women as a research fieldworker in the context of 1 public health facilities motivated me to learn about their experiences. I therefore embarked on this study to understand the women‟s everyday lived experiences from their own perspectives, taking them as subjects in their own right. The advent of ART and HIV‟s subsequent re-definition as a „chronic illness‟, have shifted the ways in which HIV (the human immunodeficiency virus) is understood and lived. Like other chronic conditions, HIV has become a condition where its 1 In South Africa we have a dual health system: public and private. The public sector is free for those who cannot afford the exorbitant costs associated with private medical care and the public sector therefore caters for the majority of South Africans but has far fewer resources available (especially in comparison to the private health sector). 1