By Rhea Mathew, GHS master's student
Heading into my first set of interviews with HIV-positive young people in Bangkok, Thailand, during my master's program capstone research project, I had little idea of what to expect. I had spent the better part of a year preparing to collect data about the stigma and discrimination faced by these individuals in their daily lives, but I had never even had discussions with HIV-positive individuals in the US, let alone in a country with an unfamiliar culture and language. Not surprisingly, I was completely lost once interviews began. I channeled my energy into nodding and smiling, being attentive to the rapid, incomprehensible dialogue occurring before me, and attempting to glean some meaning from the mannerisms and body language of the participants.
My paltry notes, however, barely reflected the true discussions that happened that day. Once interviews were completed and I was briefed by my Thai-fluent colleagues, I was astounded by the richness of the responses they had gathered from the four women and three men we interviewed. All seemed to be harboring heartbreaking feelings of isolation and anxiety when it came to school, community, work, and most notably, relationships.
So many of these young people felt so fearful of the rejection they might face that they hid their HIV-positive status from most people in their lives, including their romantic partners. More than one indicated that these relationships were not just romantic, but sexual as well. A young man divulged that he feels constant anxiety while having sex with his girlfriend, especially when choosing not to use a condom. He said he knows the chance of transmitting is very small, but he feels nervous regardless of this fact. He also noted, not five minutes earlier, that his adherence to medication is, to put it lightly, less than perfect. Whether he is aware that his medication adherence also affects the probability of sexually transmitting HIV to his sexual partner, is unclear.
What is clear to me is the ethical guideline written in both my capstone research proposal and my submission to the UCSF Institutional Review Board (IRB): As questioning will encompass sensitive subject material including, but not limited to, stigma and discrimination, there is potential for subjects to disclose information that indicates they may be planning to harm themselves or others. If such a situation is to arise, the study team would refer that individual to local support services without infringing upon their rights to privacy and confidentiality. Furthermore, such an adverse event will be reported to the IRB.
While reflecting on this professional promise I made in preparation for my fieldwork, I felt uncomfortable knowing that participants had told our study team about actions that are harmful to the health of others. I found small comfort in the fact that these young people, by nature of their recruitment into the study, already benefit from a network of support provided by social workers and the hospital in which they receive their care. However, I also know that their actions, though performed without any ill intent, have the potential to irreversibly alter lives for the worse. Having condom-less sex, while spottily adhering to antiretroviral therapy…is that not potentially harmful to others?
I could not help but think that, when conducting research in the spirit of improving the well-being of others, we could sit by quietly while victims of both a disease and a social response to that disease may be unknowingly transmitting their plight to those close to them. After speaking with my colleague who conducted the interview, it seemed she did not provide a gentle reminder to the interviewee to consult with care providers regarding sexual practices. Internally I struggled with the innate urge to provide guidance to these struggling young people, and the realization that I myself am only a few years their senior and entirely unfamiliar with the day-to-day barriers they face. It might not be my place to pass judgments on the ways in which they live their lives or handle their sexuality.
I suppose the risk of transmission is inherently bundled with the messy interactions between HIV, sexuality, stigma, and the entirely human desire for closeness and acceptance. In attempting to give HIV-positive young people in Bangkok a voice to express their experiences, would we, as researchers, be partially silencing them by choosing to fixate on their risky behaviors rather than attempting to understand their stories holistically? I have not yet arrived at the answer. However, moving forward, I hope to continue communicating clearly with my research partners and my mentor, voicing my concerns as our participants voice theirs. I also am learning to trust in the expertise of my colleagues, who are far more experienced in this type of work than I am, and striving to fulfill my responsibility to help my research participants feel safe in sharing their stories.