I was recently asked to write a few words for the newsletter of the Canadian Rural Health Research Society about the CBPR project I have been involved in as part of my PhD. My reflection was published in the August 2015 Special Edition of the newsletter, Rural Links and is included below. This special edition, edited by the talented Silvia Vilches, includes some great reading so please have a look here.
Ethical implications of Community-Based Participatory Research (CBPR)
Despite recognition of CBPR as an equitable, empowering research approach, recruitment difficulties and ethical challenges were experienced in a partnership project between the La Trobe Rural Health School (Australia) and 3 rural health services in 3 different communities. We focus on our experiences in one small rural township, population 3,000, in a bush-land setting approximately 150 kilometers inland from the south-eastern coastline of Australia.
Despite our best intentions and following CBPR principles carefully, we had difficulties in reconciling the formal ethical standards for recruitment with the expectations of potential participants and the research partner. We decided to formally investigate the challenges of using a CBPR approach for achieving community participation, focusing on one rural community in particular.
The recruitment protocol was problematic in two ways. First, our formally approved research recruitment plan included community information sessions to develop credibility and trust, yet the expectation of the health service partner was to have us ‘in’ the community actively developing relationships to attract participation. Second, the formal recruitment paperwork and process required by our ethics committee conflicted with a more social process of informing and gaining consent better suited to this community.
We were not the only organisation interested in this community. The high level of disadvantage, aging population, and above average rates of obesity and chronic disease meant that several other consultations and research projects were taking place at the same time we were scheduled to commence recruitment. The health service partner became concerned about over-consultation burdening the community and requested that we delay recruitment by 3 months.
As ‘outsiders’ we needed to find a way ‘in’ to the community, sometimes walking a fine line between the formally approved processes and the informal relationship building necessary to gain community trust to build interest in the project. What we did not expect was the high level of distrust community members had towards us as university researchers. In fact, as time went on, we discovered that active negative gate-keeping had taken place which limited the reach of our recruitment drive. This sense of distrust seemed to also be present between community member agencies, with over seventy community groups working in silos, often for similar goals, yet making no attempts to work together. Trying to work with a fragmented community added a layer of complexity to our recruitment attempts.
We were perplexed by our situation. Applying what is seemingly an equitable and empowering approach turned out to be fraught with difficulties. We wondered if other researchers using CBPR had the same issues. To identify the ethical challenges experienced by CBPR researchers at an international level we conducted a scoping review. We also created a blog http://www.cbprethics.wordpress.com as a data collection site and invited researchers to write on the blog about the ethical issues they experienced at key stages of their CBPR process. (This blog is still active at time of publication).
The ethical challenges discussed to date on the research blog focus on informed consent processes and research rigour. Other researchers also see the formal informed consent process as intimidating and a barrier to engagement and discussed the need to explore how to best provide a consent process that is meaningful for communities. Compromised research rigour is a concern and researchers highlight the need to negotiate community cultural expectations with ethics approved processes, and conflicting interests between research partners and community members. Other challenges discussed by researchers can be read at http://www.cbprethics.wordpress.com.
The ethical challenges discussed on the blog to date are similar to those identified in our scoping review literature, suggesting some consistency in the types of issues encountered. Despite the challenges encountered in CBPR, it is a well-intentioned approach that we still see as important for working with rural communities. It led to successful community collaborations across our rural partnership project overall, but we agree with Minkler (2008), who recommends greater attention be paid to ethical considerations.
Elena Wilson, PhD Candidate, La Trobe Rural Health School, College of Science, Health and Engineering, La Trobe University, Australia | E.Wilson@latrobe.edu.au
Amanda Kenny, Professor, La Trobe Rural Health School, College of Science, Health and Engineering, La Trobe University, Australia
Virginia Dickson-Swift (PhD), Senior Researcher, La Trobe Rural Health School, College of Science, Health and Engineering, La Trobe University, Australia
Reference: Minkler, M., & Wallerstein, N. (Eds.). (2008). Community-based participatory research for health: from process to outcomes. San Francisco, CA: Jossey-Bass