Ethical & Logistical Challenges and Opportunities

• In Event: Decision-Makers at Every Stage: Designing, Implementing, and Reflecting on a Community-Centered Research-Practice Partnership Project

Abstract

Purpose
Community-based research (CBR) couples academic researchers and community members, with each ideally having equal decision-making power, to collaboratively conduct research. This unique structure requires intentionality and ongoing reflection to navigate barriers in academia and internal problems that can arise during CBR. This presentation highlights ethical and logistical challenges during SCORE’s development and implementation, and how we worked to address them.

Perspectives
This work is grounded in Garlick and Palmer’s (2008) ideal relational ethic. Drawing on Bauman’s (1995) three forms of togetherness (being-aside, being-with, and being-for), Garlick and Palmer describe the ideal relational ethic, being-for, as one that contrasts with neoliberalism, competition, efficiency, and individualism. Being-for requires that we seek to amend and prevent harm in communities. Because our IRB requested that our community members participate in CITI training in order to conduct community research, we sought the literature for alternatives (Yonas et al., 2016). Concurrently, our reflection on our practices during SCORE examined the day-to-day reality of making the project “work” while centering the needs of our parent and youth community members.

Modes of Inquiry and Data Sources
The first half of the presentation reviews the literature on the role of the IRB and expectations in CBR. This sets the stage for how CBR is easily constrained by academic traditions and requirements. The second half of this presentation uses participant-observation data and reflections on the project. This data illuminates how we navigated both the IRB and other related challenges of developing and implementing this project.

Results
Evidence pointed to remedies to repair community/university research. The literature generally supported finding ways for authentic research and outcomes by working with community partners from study design to interpreting results (Israel et al. 2001; Guta et al. 2016; Pearson et al. 2014; Banks et al. 2012; Hyatt et al. 2009; Cross et al. 2015; Pearson et al. 2014). Importantly, we found an ethics training (the Community Partnered Research Ethics Training [CPRET]) that our IRB allowed us to adapt for use in our project, thus enabling us to avoid imposing the CITI Program on our nonacademic partners.

Conducting research with community partners required strategic decisions that had implications for the project. Despite our small community context, it was difficult for all researcher partners to attend every meeting. Inconsistent participant attendance complicated the research process. Working with linguistically diverse research teams was a strength of the project, but this resulted in additional cost for language interpreters. Relatedly, monolingual software complicated data analysis.

Scholarly Significance
Plagued by a history of horrendous violations in scholarly/medical research, the U.S. Congress commissioned the Belmont Report which required IRBs to ensure ethical research practices. Some IRB requirements, however, served as obstacles during our SCORE project. While CBR has immense potential for impact, academic researchers must approach such projects with intentionality. Reflecting on our experience with the SCORE project and highlighting the logistical challenges we faced will help inform future research to proactively address them.

Authors

• Chris D. Kunkel, Rhode Island College

• Jennifer A. Stoudt, University of Rhode Island