Creating Space for Young Men Who Have Sex with Men (YMSM) to Develop Ideas on Using the Internet for HIV Prevention Dinar Saurmauli Lubis A thesis submitted to Auckland University of Technology in fulfilment of the requirements for the degree of Doctor of Philosophy (PhD) 2018 Faculty of Health and Environmental Science Abstract The prevalence rate of Human Immunodeficiency Virus (HIV) infection among men who have sex with men (MSM) in Bali, Indonesia, is currently estimated at 20% (Bali Province Health Office [BPHO, 2016c]). This is significantly higher than HIV prevalence among this cohort at the national level (8.5%) and in other South-East Asian countries such as the Philippines (1.7%), Thailand (7.1%) and Vietnam (4.0%). Given relatively high rates of HIV infection among YMSM in Bali, preventing the spread of the disease among this community is vital. In recent years, Internet-based initiatives have been gaining popularity as tools for HIV prevention among YMSM as they potentially provide a convenient, easily accessible and anonymous social space for individuals requiring information and advice compared to face-to-face venues – as well as potentially providing much-needed advocacy and support. However, research on Internet-based initiatives for HIV prevention is still in its infancy, and this is true for Indonesia. Further, in order to be effective HIV prevention must be based on YMSM’s unique needs and characteristics, as evidence shows that it is essential to relate the target group’s needs to the social context. Normative sexuality in communities which endorse a heterosexual norm, often have an implication for risk and vulnerability of YMSM as well as for HIV prevention. This study adopted empowerment oriented participatory methodology to enable individuals within the YMSM community itself to contribute to the formulation of effective initiatives. The research question was How can Bali’s YMSM community be empowered to develop Internet-based HIV prevention?. The participants of this study was nine YMSM of Bali. This study employs Habermas’ critical social theory as framework and a participatory action research (PAR) research as methodology. In PAR, participants are positioned as co-researchers or partners during the research process, rather than as passive respondents. Nine participants from Bali’s YMSM community were recruited to participate in the research. The research process began by (i) creating a suitable research space, (ii) sharing the details of the research topic with the participants, (iii) developing i a research plan with them, (iv) taking action, (v) reflection, and, (vi) evaluation. The Habermas’ communicative action theory deepens the examination of this study into the complexity of the HIV epidemic and prevention practice which has roots in community structures and HIV systems where HIV prevention is practice, produced, and reproduced. The participatory action research has opened up opportunities to create collaborative action by co-designing the HIV prevention initiative for YMSM in the Internet. Using PAR as a tool for collaborative research had provided enlightenment on the need to shift YMSM’s roles in HIV prevention, from being clients to being collaborators. The original contribution of this study to the body of knowledge is on how pivotal to create space for YMSM’s lifeworlds in informing a better and culturally acceptable Internet based-HIV prevention initiatives for YMSM. The findings of the current study have implications on policy and practice for Internet-based HIV prevention techniques both in Bali and beyond. The policy and programme recommendations include the need to create spaces for the YMSM in the HIV prevention as prosumers; the need to produce guidelines to conduct an Internet-based HIV prevention in Bali which is relevant to the lifeworld of YMSM; and ensuring the digital right of YMSM to access HIV information and to engage in Internet-based HIV prevention activities in the Internet. ii Table of Contents Abstract .............................................................................................................................. i List of figures ................................................................................................................... vi List of tables .................................................................................................................... vii List of Box ..................................................................................................................... viii Glossary ........................................................................................................................... ix Attestation of authorship ................................................................................................... x Dedication ........................................................................................................................ xi Acknowledgements ......................................................................................................... xii Ethical Approval ............................................................................................................ xiv Chapter One ...................................................................................................................... 1 SITUATING THE RESEARCH ....................................................................................... 1 1.1. Introduction ....................................................................................................... 1 1.2. Background and rationale ................................................................................. 2 1.3. Aims of the study and research question........................................................... 5 1.4. The philosophical framework of the study ....................................................... 5 1.5. Significance of the study ................................................................................... 7 1.6. Researcher positionality .................................................................................... 7 1.7. Structure of the thesis ...................................................................................... 10 Chapter Two .................................................................................................................... 12 SITUATIONAL CONTEXT OF THE STUDY ............................................................. 12 Introduction ..................................................................................................... 12 The HIV Epidemic in Indonesia and Bali ....................................................... 14 Structural determinant and socio politic position............................................ 29 The Indonesian political response to the HIV epidemic ................................. 36 Summary ......................................................................................................... 45 Chapter Three .................................................................................................................. 46 YMSM AND OPPORTUNITIES FOR INTERNET-BASED HIV PREVENTION: A POLICY REVIEW .......................................................................................................... 46 3.1 Introduction ..................................................................................................... 46 3.2 The role of global HIV policy in HIV prevention for MSM........................... 47 3.3 HIV prevention models ................................................................................... 50 3.4 The digital divide among MSM and YMSM .................................................. 59 3.5 The Internet and YMSM’s lifeworld .............................................................. 62 3.6 Online HIV prevention in Indonesia ............................................................... 74 3.7 Barriers to employing Internet-based HIV prevention initiatives ................... 80 iii 3.8 Summary ......................................................................................................... 81 Chapter Four ................................................................................................................... 83 RESEARCH DESIGN FOR DEVELOPING YMSM’S IDEAS ABOUT INTERNET- BASED HIV PREVENTION ......................................................................................... 83 4.1 Introduction ..................................................................................................... 83 4.2 Positioning the research study ......................................................................... 83 4.3 Habermas’ Communicative action as theoretical framework for the study .... 85 4.4 PAR as methodology underpinning the research ............................................ 87 4.5 Research design of the study ........................................................................... 96 4.6 Pre-fieldwork preparation ............................................................................... 96 4.7 Pre-fieldwork preparation in Bali.................................................................... 98 4.8 Selection and advertisement of the research ................................................... 99 4.9 The co-researcher and the research facilitator .............................................. 101 4.10 Creating space for YMSM in research .......................................................... 103 4.11 Rigour in the study .......................................................................................