The ethics of community-centred coalition building around health concerns
Amber L Abrams, PhD, CSID Fellow and Senior research officer at the Future Water research institute, based in the Civil Engineering department, at the University of Cape Town
Hi! I am Amber, a CSIDNet fellow and researcher at UCT’s transdisciplinary, Future Water research institute. My fellowship works to develop local resident-driven co-inquiry groups towards formulating a water-related, climate sensitive infectious diseases community of practice. As part of my CSIDNet Fellowship, I undertook to explore the intersection between water related infectious diseases and climate sensitive infectious diseases with the idea that I would work with local resident groups to understand their most pressing concerns and build a community of practice around those concerns. My aim was to bring together local residents facing water related, climate-sensitive challenges, with researchers, city officials, practitioners, and even funders potentially, but always with the intention of starting with local residents first. My approach to building this community of practice draws on existent networks with resident groups, or community health workers; the intention is to highlight key, salient topics for local residents that can be workshopped and co-researched, drawing on the CoP for inputs and co-learning.
As an anthropologist, I was taught to work on topics that are most salient to the people we are working with. Key to our practice is ensuring that we first do no harm, especially in the medical anthropology context that I first worked, which has significantly influenced my practice since. Specific to that context is the training in Good Clinical Practice, and in depth understanding of the Belmont Report and its implications as key texts that guide practice and remind us what happens if ethics does not remain at the fore of our thinking. In the context of my training and approaches to research, I add the ethical guidelines of Anthropology Southern Africa society (code of conduct), and the San code of conduct to my considerations of what is ethical [the reader will likely have a range of different local ethical and discipline specific guidelines to keep in mind].
Over the course of the last year I have held multiple focus groups with resident groups that I worked with in the past, from a variety of different settings. In some cases the resident groups are already a coalition, working to understand water sensitivity in their neighborhoods; and in other groups or settings, the citizens I am working with are community health workers or interested citizens looking to understand their local environment. In the South African context where I am working, unemployment is high as is socioeconomic stress. Something that I learned when conducting research amongst people living with tuberculosis and HIV/AIDS was that when people are worried about accessing food or other basic necessities, additional considerations (like longer-term, climate-aware planning or prescription regimen adherence) fall to the wayside. This is true of future planning in contexts where people are just trying to survive.
Taking you readers along with me in reflection, I flashback to the various focus groups that I have held over the course of this past year to begin to unpack and understand what are the climate-sensitive, water-related concerns that people are most worried about. After explaining our research and my interests, and obtaining consent, I started all the focus groups asking about people’s living situations, and the water concerns that arise in those situations. In many cases the people I spoke with live in situations of unplanned neighborhoods, which means aspects of drainage, waste removal, and other service provision are missing or are not enough for the density of people living in these spaces. At the same time people are very aware of their own situations and are experts in their lived reality. Relatedly many people were able to identify water-related, climate impacted concerns. For example, one community health worker with children explained to me that because of the neighborhood she lives in (and because service provision is not evenly distributed) her children, on the hottest days of the year, find themselves playing in puddles or incomplete construction sites where water has pooled. Her concern for her children centred on “drowning and skin rashes”. When I ask questions related to water, lived experiences and health concerns again and again I was presented with challenges that are immediate and largely not challenges that are infectious diseases. Yet, in the drowning hazard that a mother identifies as increasing her mental burden, my training has me thinking about a range of exposures that are exacerbated by climate shifts (temperature increase and flooding), from bacteria to protozoa (leptospirosis or cryptosporidium) outbreaks. So, the ethical question arises: do I begin to explain or unpack the various potential communicable or infectious diseases that could sit in these standing/swimming water sources to determine which are most locally relevant?
Do I raise an additional concern in the already stressful and tenuous situations people find their children living in? How do I work towards the goal of my fellowship without creating additional alarm and concern for people who are already living in challenging situations? What would be the benefit of making people aware of an infectious disease aspect where they are already scared of certain spaces that could harbor these infectious diseases? And how can I present to residents or ask them to coalesce around a movement that isn’t the most pressing for their daily concerns?
These ethical questions remain. The people I have been working with are identifying pathways to exposure to communicable diseases, but they don’t necessarily have the language to speak about, for example, leptospirosis or the fact that standing water can become vectors for diseases that aren’t yet on the radar in Cape Town but we recognize may be, in the future, due to climate shifts. Do I raise these concerns as future thinking? Do I add another, future concern to a potentially already stressful mental load? How, if at all, should I discuss a future 3, 5, 10 years from now amongst people who are thinking about how to get food tomorrow? How do I work in the space that I’m in without adding additional concerns or doing any long-term harm? The specific ethical quandaries that I am facing are further complicated by my positionality, identity and research training, but despite that, I think I am learning again and again about the importance of careful self-reflection and open, humble and honest relations with the local resident groups I have worked with; it is these kinds of relations that have made ongoing research and exploration possible.
Useful Readings:
Benatar, S. R. (2002). Reflections and recommendations on research ethics in developing countries. Social science & medicine, 54(7), 1131-1141.
Lavery, James V., R. E. G. Upshur, R. R. Sharp, and K. J. Hofman. “Ethical issues in international environmental health research.” International journal of hygiene and environmental health 206, no. 4-5 (2003): 453-463.
Gopichandran, V., Luyckx, V.A., Biller-Andorno, N. et al. Developing the ethics of implementation research in health. Implementation Sci 11, 161 (2016). https://doi.org/10.1186/s13012-016-0527-y
Richards, Helen Mary, and Lisa Jennifer Schwartz. “Ethics of qualitative research: are there special issues for health services research?.” Family practice 19.2 (2002): 135-139.
Smith, Selina A. and Daniel S. Blumenthal. “Community Health Workers Support Community-based Participatory Research Ethics: Lessons Learned along the Research-to-Practice-to-Community Continuum.” Journal of Health Care for the Poor and Underserved, vol. 23 no. 4, suppl., 2012, p. 77-87. Project MUSE, https://dx.doi.org/10.1353/hpu.2012.0156.