Reflections on the ethics of participatory visual methods to engage communities in global health research

Abstract

There is a growing body of literature describing conceptual frameworks for working with participatory visual methods (PVM). Through a global health lens, this paper examines some key themes within these frameworks. We reflect on our experiences of working with with an array of PVM to engage community members in Vietnam, Kenya, the Philippines and South Africa in biomedical research and public health. The participants that we have engaged in these processes live in under-resourced areas with high prevalence of communicable and non-communicable diseases. Our paper describes some of the challenges that we have encountered while using PVM to foster knowledge exchange, build relationships and facilitate change among individuals and families, community members, health workers, biomedical scientists and researchers. We consider multiple ethical situations that have arisen through our work and discuss the ways in which we have navigated and negotiated them. We offer our reflections and learning from facilitating these processes and in doing so we add novel contributions to ethical framework concepts.

Community engagement and ethical global health research

“…Consulting or listening to community members entails researchers seeking their input, for example, through community advisory boards, about suitable ways to recruit study participants, to implement the study and to act appropriately as guests in the community (Cheah et al, 2010). Creative participatory methods, such as forum theatre and visual methods offer alternative ways to gain insights from communities compared to traditional methods, such as formal interviews or focus group discussions (Black et al, 2018;Boal & McBride, 1985Wallerstein & Duran, 2010). Collaboration between researchers and communities means that communities are involved as partners, co-develop the study protocol and share responsibilities in conducting research Emanuel, Wendler, Killen, & Grady, 2004; National Institute for Health Research, 2012).…”

“…Engagement therefore denotes a wide variety of activities, such as patient and public involvement events (e.g. science cafes events), consultation regarding study activities through community advisory boards (Cheah et al, 2010;Kamuya, Marsh, Kombe, Geissler, & Molyneux, 2013), participatory community drama (Lim, Peto, Tripura, & Cheah, 2016;Nguon et al, 2018) and participatory visual methods (Black, Davies, Iskander, & Chambers, 2018;;Marsh et al, 2011O'Donovan et al, 2019. A specific engagement strategyand associated activitiesis contingent on the nature of the research it accompanies.…”

Drama as a community engagement strategy for malaria in rural Cambodia

“…Our community engagement project used traditional Cambodian drama, a visual method of engagement, to incorporate key messages about malaria prevention and elimination. Participatory visual methods as a community engagement strategy can increase participant engagement and communication, allow participants to share their stories, opinions and experiences, and foster relationships between researchers and the participants 21 , 22 . A similar method was used in a study in Laos which utilized traditional folk songs known as 'lam' as an educational medium for preventing HIV/AIDS 13 .…”

The Murky Ethics of Visual Qualitative Methods: Picturing a Clear Path Forward

“…Despite claims that information on visual ethics is lacking (e.g., Evans-Agnew & Rosemberg, 2016), there are dozens of articles that address ethics and provide visual ethics guidelines (e.g., Cox et al, 2014;Papademas & International Visual Sociology Association, 2009). This list is brief, and nonexhaustive, but existing ethical analyses address: using visual methods with communities who experience multiple forms of oppressions and/or who may need special protections for visual research (e.g., refugees, sexual minorities, people with HIV, people with disabilities, youth, and substance users; e.g., Boxall & Ralph, 2009;Drew, Duncan, & Sawyer, 2010;Pittaway, Bartolomei, & Hugman, 2010;Teti, Murray, Johnson, & Binson, 2012), potential for visuals to compromise people's safety via increased visibility (e.g., Black, Alun, Dalis, & Chambers, 2018;Harley, 2012;Holtby, Klein, Cook, & Travers, 2015;Joanou, 2009), risks posed by online dissemination (e.g., uncontrolled, permanent) of photos (e.g., Creighton et al, 2018), rights of those photographed by participants (e.g., Teti et al, 2012;Wang & Redwood-Jones, 2001), challenges of using IRBs in visual research (e.g., Flicker, Travers, Guta, McDonald, & Meagher, 2007;Khanlou & Peter, 2005;Mok, Flora, & Tarr, 2015), problematic misinterpretation of images by the public including reinforcement of negative stereotypes about marginalized groups (e.g., Langmann & David, 2014;Quaylan, 2012), lack of social justice or social change via PAR visual methods like Photovoice that promise those outcomes or undue pressure on participants to make broader changes happen (e.g., Evans-Agnew & Rosemberg, 2016;Johnston, 2016;Liebenberg, 2018;Mitchell, 2011;Prins, 2010), too much researcher control over analysis and interpretation of images (e.g., Guillemin & Drew, 2010;Liebenberg, 2018), and confusion over who owns the images (e.g.,…”