Uncomfortable research: expectations and experiences in examinations of HIV/AIDS and ‘hope’ in Serbia

This article is part of the following series:

Serbia isn’t the first, or even the tenth, country that generally comes to mind when thinking about places deeply affected by HIV/AIDS. But in common with the rest of the Eastern European region it has a pressing HIV problem. With an emerging concentrated epidemic, a severely weakened health infrastructure and the ongoing political and economic ‘transition’ Serbia experiences significant challenges in meeting the needs of people living with HIV(PLHIV).

I worked on a longitudinal, qualitative study following 20 PLHIV over a 30 month period. Data was collected using repeat interviews and audio diaries (the latter of which are not discussed explicitly here). Through iterative analysis the study’s focus was honed to explore how PLHIV managed insecure delivery of HIV treatment, given that anti-retroviral therapy (ART) was intermittently missing from the State pharmacy shelves, and in particular how they coped with this in their daily lives.

Unlike the more common stories of the rejuvenating effects of improved access to anti-retroviral treatment in low income settings, in Serbia, a resource-stretched setting, life for PLHIV was characterised by deep uncertainty caused by erratic treatment supplies, continuing stigma and an atomised ‘community’ of PLHIV. There was minimal participation in ‘community action’ around HIV treatment access and anti-stigma efforts. But when I asked what their thoughts were for the future individuals were consistently hopeful. Despite their apparent despair in the political capacity to improve the situation and their resolute disengagement from community efforts they were hopeful things would get better.

I wanted to examine why they did not want to be involved themselves in community action and what the basis for their hope was, if they could not identify a source of effective action. But I found, and maybe it seems obvious now, that, however thoughtfully done, the act of asking about hope- why are you hopeful, what do you hope for- exposed its fragility. I had to step away from exploring it directly because of the risks it seemed to present in disrupting it.

So there are three key learning points that I want to share from this experience. They concern the methodological issues involved in examining the concept of ‘hope’ in relation to HIV/AIDS; the potential for researchers to raise false hope and expectations through conducting such research; and the emotional labour of undertaking this type of work for HIV/AIDs researchers.

How might we look at hope in the context of social research around HIV? My explorations in Serbia were primarily done indirectly, so that in both the data collection and analysis I looked at how hope (or its relative absence) was framed through other subjects. Yet, when it was spoken about it, it seemed to follow an incomplete logic. Informants consistently spoke about their own disengagement and disbelief that they would be part of any positive change in the future. They often could not describe the reason for their hope to me. Yet, they frequently talked about being hopeful. I was initially frustrated that I could not elicit why they felt that way or what their hope was based on. But in my analysis I came to understand that hope was created and maintained by informants rhetorically, i.e. through repeatedly talking about being hopeful explicitly in interviews seemed to affirm their belief in being hopeful. That the interviews and research in general, should provide such a significant forum to maintain hope exposed the limited resources and opportunities had by PLHIV outside of the research.

Unwittingly, this study itself became a source of hope and as a researcher this finding was a source dilemma and discomfort throughout the conduct of this work. This came to light as participants reflected on their transient support networks and opportunities and then as they described how this study became a source of stable support and comfort, not least because now they know “that there was someone doing something about it and it would get better.”  (‘It’ in this case was the insecure availability of State- funded HIV treatment in Serbia). Were participants’ comments to be ignored, addressed or dispelled? What would be the consequences of each of these options on the individuals’ well-being and the results of the research? The potential of social research to have a therapeutic function in relation to interactions with PLHIV raised two critical issues: the first is how the research was inadvertently changing the phenomenon under study; and the second is the ethical concerns that are provoked by raising (or maintaining) the expectations of participants beyond what the study can deliver. Much has been written about the effects of research on participants, but to my knowledge little has been discussed about the influence that the interaction with the researcher might have on participants in qualitative research- in this case garnering (potentially falsely) elevated hopes in the researchers’ capacity to instigate positive change. Certainly, there is little more than anecdotal discussion amongst qualitative researchers examining the uncertainty and trauma created by HIV/AIDS  and about the potential or actual influence their research may have on the informants perception of their condition.

As a researcher you can explain the limited role of the study, but this doesn’t mean that you can actually convince participants that the research at best will be part of incremental change when what they want to hear, because it is what is needed, is that it will bring a dramatic shape-up! At each stage of the study its time-bound nature and limited influence was discussed with the individuals. Towards the end of the study we held a focus group to discuss what else could be done with the research and came to a consensus on the aims, dissemination outputs and challenges we faced. Participants were given regular updates on the dissemination plans up to a year after the end of the study. I think this contributed considerably to ameliorating their disappointment that their early expectations were not met, but it also showed me that the capacity that I had to control participants’ expectations, as in most forms of control, was limited.

Finally, I want to discuss the effect of qualitatively researching HIV on researchers themselves. This is particularly pertinent when a researcher feels pressured to deliver unrealistic outcomes and is often working alone.  Given that much qualitative HIV research focuses on the experiences of those whose lives are characterised by insecurity, fear and social marginalisation (which in my case study was perpetuated, rather than instigated, by an HIV diagnosis), why don’t we talk more about how hard these stories are to hear and work with? The obvious answer is because it is fatuous to compare the hardship involved in experiencing and listening to the experience. The focus, rightly, has been on collecting evidence and then using this to urgently advocate for improvement. This is what needs to be done. But there is a secondary thread to this. Listening for three years to these stories – imbued with an unrealistic expectation, is affecting. To talk about the demanding effects this may have on researchers is not navel gazing, but fair and appropriate to ensure that researchers are equipped to continue to conduct such research.  Listening during the interview, writing the fieldnotes, trawling through the data during analysis- labouring over desperate incidents over and over again- takes a toll that would in other professions, such as social work, psychology, counselling, be managed as part of a professional duty of care and best practice. In research it is considered the responsibility of the individual researcher to ‘get on with it’. Few supervisors take the time or have the capacity to provide effective support. We need to take this element of our work more seriously. Not least by those of us who have a sharp awareness of the emotional challenges involved. We have a responsibility to other researchers who are about to go through it.  We can start by talking about it.

2 replies on “Uncomfortable research: expectations and experiences in examinations of HIV/AIDS and ‘hope’ in Serbia”

I read that during the Kosovo riots in 2004 that Serbian doctors there were purposely raped by rioters who had HIV/AIDS and other diseases. Did you know of any who’d come from Kosovo who had HIV/AIDS stemming from that?

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