After getting our first study with UCSF-Berkeley students under our belt last winter, this year I had the chance to work more closely with the lead student, Tanya, to help design a qualitative research project I’ve been wishing someone would do for a long time: conduct focus groups in rural areas to explore people’s lived experiences of their health care.
The reason I was hoping that Tanya would use her fellowship for qualitative research is that there seems to be a lack of rigorous investigation of health practices from the perspective of populations like those we work with in Nepal. In a talk I gave at UCSF last spring, I suggested that research agendas tend to be set by institutions that are far removed from marginalized communities, even when those communities are the target of the research (a phenomenon that is, in fact, its own area of critical analysis in human rights literature – no points to me for coming up with that).
The result is that too often, resources are directed at research that serves the researchers instead of the development of better health care structures in places like Nepal. Worse still, whether or not we realize it, academics sitting in California or Ohio or Connecticut designing research questions about people in Rupakot, Nepal, are inevitably influenced by implicit biases about rural, non-western, non-white poor people. The result is an overage of studies on things like shamanism and use of medicinal chewing branches, and a lack of documentation on what drives people to practice inadequate oral hygiene even though, in point of fact, modern hygiene products like those in your own bathroom are widely available in rural Nepal and people already know how they should be used. This bias in research then translates to poorly conceived interventions such as distribution of free dental care products and lessons on personal hygiene, even though that’s not addressing the causes of disease. From a human rights standpoint, this result is demeaning. And the overall dynamic preserves research institutions from the voices of marginalized communities and a responsibility to legitimize non-academic perspectives.
This year Tanya and I worked together to design focus group questions that would lead to conversation among rural residents about their actual beliefs and practices around health care. In Jevaia we’ve seen through years of trial and error that understanding people’s perceptions of their resources is as important as what those resources are. The focus groups will look at how much residents feel oral disease matters and why, and try to break down the choices that villagers make about both daily hygiene and seeking of treatment services. Knowing how little up-to-date research of this kind exists in Nepal, I am really hopeful that Tanya’s study will provide a foundation for more relevant, application-oriented quantitative research in the future.
So here you have it – our focus groups! The first was actually a presentation of last year’s study to the villages where last year’s students collected the surveys, in Puranchaur and Hanspaur. Then we had a lengthy and very informative discussion with leaders and teachers from those areas about the meaning of the study results.
The second and third focus groups were in two areas where our project has completed the two year seed cycle and the clinics and school programs are continuing in the handover phase. We did two parallel focus groups in each location, and our Jevaia field staff took roles as facilitators and note takers, which is was a great professional development experience for them (and me!).
The fourth pair of focus groups was in an area where our program will soon be launching, in the district of Parbat. Finally, the last was in an area we’ve never worked in before, called Dhital, during our promotional camp. By this time, our facilitator Sujata and I were really in the groove…
In each of these, I took a job as an official note-taker, which gave me an awesome opportunity to listen in closely to what participants had to say. I learned that there is a very high level of awareness that sweets and junk food cause oral disease, and also that parents largely feel helpless to control their children’s junk food intake. I heard some things I expected, such as that basically everyone already knows you are supposed to clean your mouth twice daily, and that products to do this are available and affordable, but that for some reason, people don’t do it anyway. Some of the groups began to get in to nuanced discussions of why that is which were totally fascinating.
Important for us, many groups talked about treatment-seeking behavior. There was categorical agreement that this only happens when there is pain that is impacting someone’s ability to function. People felt that traveling to a city was a significant burden and that proximity of services was a major determinant of what kind of treatment they would seek. There was a widespread awareness that dentistry is a vaguely dangerous and poorly regulated practice, and that you can never be certain that a provider is qualified.
A few of the groups I was in veered in to more practical brainstorming once the official “focus group” discussion was over. These conversations ranged from funding their local clinics to requesting clarification around beliefs raised in the focus group (for example, dangers of blindness from dental care). One group even asked for a proper brushing lesson, so our Sarangkot Clinic Assistant Renuka, who was acting as a note taker, got up and gave an excellent demonstration right there in the focus group!
All around, this was a GREAT learning experience for all of us, and I hope it will produce some pretty solid qualitative data on health beliefs and practices in these areas. Super proud of our whole team, especially Muna, Gaurab and Rajendra in the office, who organized an insanely complex tapestry of logistics to to make this happen.