Copyright is owned by the Author of the thesis. Permission is given for a copy to be downloaded by an individual for the purpose of research and private study only. The thesis may not be reproduced elsewhere without the permission of the Author. The Reconstruction of Identity in People Living with HIV in Nepal A thesis submitted in partial fulfilment of the requirements for the degree of Doctor of Philosophy Massey University, Albany New Zealand Ram Prasad Aryal 2015 ŝ ŝŝ Dedication I dedicate this thesis to my illiterate parents and grandparents, my mother, Chetana Aryal, and father, Ngachchha Prasad Aryal, and grandmother, Gita Aryal, and grandfather, Dandapani Aryal, who never attended any school, but who dreamed, and pampered and navigated me towards my education. ŝŝŝ ŝǀ Abstract This research is about the experiences of people living with HIV (PLHIV) in Nepal, especially with regard to the processes of reconstructing their identities. The processes of identity reconstruction include migration, concealing and disclosing HIV status, movement towards economic independence, gaining knowledge on Human Immuno- deficiency Virus (HIV) and Acquired Immuno-deficiency Syndrome (AIDS), practising HIV treatment, receiving support of organizations, and practising spirituality. Despite the availability of some studies on HIV and AIDS in Nepal, most have focused on epidemiological facts. There is a dearth of Nepalese HIV and AIDS literature on identity reconstruction of PLHIV. This study investigated the lived experiences of 33 PLHIV related to their HIV stigma, discrimination and identity issues in Kathmandu and Pokhara valleys in Nepal, using semi-structured, face-to–face, in-depth interviews. The field data were analysed using a thematic, meaning-making approach. This research contributes to HIV literature by showing that the economic stigma and discrimination due to HIV experienced within a family are often stronger than social stigma and discrimination. This research proposes a model entitled “the reconstruction of identity in PLHIV in Nepal”, based on the data derived in an inductive way from the two research sites, then moving from data to theory. There are various stages of identity ranging from spoiled to reconstructed. This proposed identity model is based on the economic and social empowerment of the PLHIV, together with identity transformation from one stage to another, and the situations participants experience in the contemporary Nepalese socio-political context. ǀ The identity of PLHIV is fluid and non-linear. This research suggests that access to resources often determines the degree of family and social stigma and discrimination. Moreover, PLHIV also reunite with both family and society after becoming economically independent and socially empowered. Indeed, HIV has been a catalyst, especially for in-migrant women with limited access to resources. This study has significant policy implications for improving the quality of life for PLHIV, reducing family and social stigma and discrimination as well as reconstructing their identity in Nepal, and in South Asian countries with similar socio-cultural and economic settings. ǀŝ Acknowledgements I am extremely grateful to the many people who have contributed their efforts to make this doctoral study possible. I am unable to acknowledge by name everyone who has contributed, but I will remember many such people with great appreciation. First and foremost, my deepest respect and gratitude go to my two supervisors, Associate Professor Mark Henrickson and Associate Professor Ann Dupuis, who gave generously of their time and empathetic assistance. I am extremely indebted to my main supervisor, Mark Henrickson of the School of Health and Social Services at Massey University, for his expert guidance and supervision in all stages of this work, including seeking financial support prior to the commencement of this study. Likewise, I am extremely indebted to my co-supervisor Ann Dupuis of the School of People, Environment and Planning at Massey University for her intellectual generosity and I have greatly benefitted from her wealth of methodological, empirical and theoretical knowledge. Indeed, I do not have the words to express my appreciation to both supervisors. I would also like to express my sincere thanks to Nicci Salter and Anita Albert at Massey University who contributed a lot of their time and effort for my study from the day I arrived here. With regard to financial support, I am very grateful to the New Zealand Ministry of Foreign Affairs and Trade for the NZAID Scholarship that made this research possible. I am very grateful to the authorities of Pokhara University and to my earlier Professors of Tribhuvan University in Nepal for this wonderful study opportunity. My deep respect and gratitude go to former and present executive authorities, especially to Professor Keshar J. Baral, Associate Professor Om Prakash Sharma, and Associate Professor Ishwar Chandra Baniya of Pokhara University, all of whom greatly assisted me during ǀŝŝ the various stages of my research. Likewise, I am very grateful to the Faculty of Humanities and Social Sciences, especially to Professor Indra Prasad Tiwari and to colleagues Arjun Kumar Thapa and to Rishikesh Pandey whose good initiatives in doing previous HIV research in the Pokhara Valley also assisted me in providing additional background for this present study. My gratitude also goes to Hemant Raj Kandel who provided outstanding back-up for this research, especially with regard to data collection over the period of field work. Turning to my previous study institution, I am deeply indebted to my former supervisor Bhim Prasad Subedi, Professor of Geography at Tribhuvan University, who constantly encouraged me to pursue my PhD and gave me empathetic support for this study. Likewise, I have been very fortunate to have Dr Bhanu Bhakta Niraula in New Zealand for discussing present Nepalese HIV research issues, my gratitude goes to him. As a student I have benefitted very much from the population expertise of Professor Bal Kumar KC, former head and a pioneer of the Central Department of Population Studies; my gratitude goes to him and to other Professors, especially to Professor Ram Sharan Pathak, and to Professor Devendra Chhetri at Tribhuvan University. I am also very indebted to the research participants, including organizations working in the field of HIV, research approval bodies, and to my friends who wholeheartedly supported me in data collection and data management. In this regard, I am extremely indebted to the PLHIV, who were research participants and shared their experiences courageously and persistently, and helped whenever I asked for further information. I am very lucky to feel a sense of belonging with them, sharing both their sadness and happiness, as my interviews moved through various stages of their lives, often representing a life cycle of sadness and happiness. Likewise, I am very grateful to eight ǀŝŝŝ organizations working in the field of HIV located in Kathmandu and Pokhara valleys, and the peripheral locations of the Pokhara Valley through which I was enabled to gain a rich data set. I am equally grateful to the Massey University Human Ethics Committee (MUHEC) and Nepal Health Research Council (NHRC) for providing me ethical approval for conducting HIV research in Nepal. Indeed, I am very grateful to Dr Merv Coates for his empathetic support towards my study. Likewise, I am very grateful to Steven Duxfield, Alesana Palaamo, Dr Achyut Aryal, Kamal Prasad Shrestha, Uma Nath Sharma, Goma Banjade, and Jyoti Pradhan for their strong support for this study. I would like to express my gratitude to Dr Narayani Tiwari, Dr Tara Nath Pandey and other colleagues of Population Women Environment Development Organization, who supported me generously, enabling me to establish contact with organizations working in the field of HIV. Last, but not least, my family members supported me persistently in completing this research. My wife Shuvadra who sacrificially carried a “double” responsibility, not only doing a mother’s role but also a father’s role during my absence for this research. Likewise, my daughters Rachana and Jyoti, and son Sugam, to whom I could not give much time as I would have liked as a father. I am very grateful to them. Indeed, I am very grateful to my five younger sisters, the eldest one (dead), Maiya, Apsara, Sita, Sarita and three younger brothers Badri, Yubraj, and Prakash for their constant encouragement and support spiritually and emotionally, as well as bearing full responsibility in caring for our elderly mother and father in many and varied ways during my absence, to enable me to complete this study. ŝdž