| This dissertation combines two empirical phases and a conceptual phase addressing community engagement in research.;The empirical phases focus on qualitative data collected from the first 12 institutions receiving funding through the CTSA program in 2006. In the first study, the original and renewal grant applications submitted by the institutions for CTSA funding were reviewed for definitions of community and community engagement, descriptions of strategies for engagement the institutions planned to employ, and changes over time. Twelve original and 10 renewal grant applications from the institutions were reviewed. Findings suggest the institutions are using definitions of community that include faulty/staff/students at the institution, community care providers, racial/ethnic/culturally designated communities, and communities defined by disease or condition. The engagement strategies were varied, including instrumental and applied engagement strategies. Between the original and renewal grant periods, most institutions expanded their strategies, with greater numbers adding pilot grant programs and increasing community representation on a variety of boards. Importantly, the institutional-level nature of the CTSA funding made it possible for the engagement strategies to find broad exposure and increased value for connecting researchers and potential partners. The results may be helpful for other CTSAs, as well as non-CTSA institutions considering institutional approaches to engagement.;The second empirical phase consisted of qualitative semi-structured interviews with staff from the community engagement core of each institution's CTSA and supports and challenges experienced by the core over the course of implementing the CTSA. Nine of the 12 potential institutions participated; two refused to participate and the third was deemed ineligible due to recent staff turnover. The goal was to have interviews with the core director and a program manager or other staff member closely involved with the community engagement core on a daily basis, for a total of two interviews at each institution. At eight institutions, two interviews were conducted, while at the ninth, only the core director was available. A total of 17 interviews provided the data from which themes about supports and challenges in engagement were drawn. Funding and leadership were highlighted as sources of support, but also potential challenges where they were lacking. A key challenge included unsustainable models of engagement, which included mismatches between expected and actual effort required, differences in research and community partner priorities, and lack of a pathway for junior faculty to become involved. The findings from this phase suggest ways the NIH and other institutions can support and promote community engagement in research, and ways failing to invest and support engagement can hamper its success. The implications apply to CTSA and non-CTSA institutions, as well as research funding agencies nationwide.;The conceptual phase attempts to develop a framework establishing an ethical duty to engage communities in research based on characteristics of research, researchers, the research context, communities, and more. The purpose of the framework is to explicitly define when and justify why community engagement is ethically necessary in research. The intention of the framework is to supply researchers and institutional review boards with guidance in deliberations about when to include communities in research. (Abstract shortened by UMI.). |
