Community researchers conducting health disparities research: Ethical and other insights from fieldwork journaling

Abstract

Lay persons who are trained to conduct research in their own communities form an essential part of many research projects. However, the effects of conducting research in their own communities have not been adequately explored. This paper examines the experiences, perceptions, and challenges faced by a group of community researchers during their involvement in a research project that examined if, and how, the relationships between mothers and their adolescent daughters could be harnessed to develop a daughter-initiated cervical cancer intervention. Seven community researchers interviewed 157 mother-daughter pairs in Cape Town, South Africa. We examine the use of journaling as a tool to document the experiences of community researchers, and we consider how journaling may help the community-based researcher grapple with the research process, and, more broadly, what such journal content illustrates with respect to the nature and challenges of community-engaged health research. An analysis of the content of the journals provides a strong indication of how personal and intimate the research process can be for community researchers by virtue of the background that they bring into the process as well as the additional weight of the research process itself. The complexities of navigating dual and somewhat oppositional roles – the role of impartial scientist or researcher and the role of invested community person - has been both underestimated and insufficiently researched.

Proximity, Ethical Dilemmas, and Community Research Workers

“…In the context of international CEnR, Mosavel et al (2011) discuss boundaries in terms of a tension between the benefits of connecting with participants and the "typical" approach to research ethics, which encourages "emotional distance" (146). They indicate further that, in their study, a "focus on objectivity and boundaries, while well-meaning on the research team's part, created a dilemma for some of the participants" (2011,150).…”

“…CRWs are workers hired because of their close ties with target communities Molyneux, Kamuya, and Marsh 2010;Roche, Guta, and Flicker 2010), and are widely thought to increase success in recruitment and data collection among marginalized research populations (Bean and Silva 2010, 18;Flicker, Roche, and Guta 2010, 4;Griffiths et al 1993Griffiths et al , 1617Simon and Mosavel 2010, 3 CRWs face situations in which they must decide between equally legitimate but potentially competing values and responsibilities-for example, the imperative to help an individual versus adhering to the constraints of the research protocol. Such value conflicts (ethical dilemmas) and personal stress facing these hired research workers in CEnR have been described recently in the international context (Kingori and Garrets 2010;Molyneux, Kamuya, and Marsh 2010;Mosavel et al 2011;Simon and Mosavel 2010). However, much less attention has been paid to these same issues in U.S. settings despite the growing emphasis on health disparities and translational research.…”

Research Apprenticeship and Its Potential as a Distinct Model of Peer Research Practice

“…We propose a research apprentice model of peer research engagement that would add a deliberate dimension of workforce development to the publicly funded research enterprise while contributing to realize the goals of capacity building, empowerment, and co-learning intrinsic to participatory and translational research(6,18–22). As envisioned, the model capitalizes on the widespread engagement practice of providing community members with training in core concepts, basic research methods, and miscellaneous job skills(5,9,20,23,24), but emphasizes comprehensive instruction to render the apprentice skilled both on broad and specific aspects of research, while fostering aptitudes needed for sustained workforce participation.…”

Working with teams of "insiders"

“…CBPR usually incorporates the research team and community in all parts of the research process, from determining the problem and gaining participant consent to how to address the problem, analyze the data, and provide feedback to the community for community action (Foster et al 2010;Minkler 2005). The use of lay community members as researchers, however, can raise issues related to their close identification with those being researched (Mosavel et al 2011;Kanuha 2000). In a particularly insightful paper that highlights these issues, Mosavel and colleagues (2011) discuss ways of uncovering the impact of research on "community researchers".…”