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Community engagement in research: practical strategies and tools for successful implementation
Sandhya Seshadri1,2, Benzi M Kluger1,2, Sandra Monacelli3,4
1Department of Neurology, University of Rochester Medical Center, Rochester, NY, United States.
Background:
Despite recognition for the value of community partnership in research, practical strategies for supporting authentic engagement can be unclear. Thompson et al. (Strategies of community engagement in research: definitions and classifications. Transl Behav Med 2021;11:441-51) present a continuum of community-engaged research interactions to create shared understanding for researchers and community members, along with specific engagement strategies along a continuum of community partnership.
Purpose:
This study (i) describes collaboration and partnership approaches and the concrete strategies utilized in two different research communities in the form of two case studies and (ii) addresses benefits, challenges, and outcomes associated with these approaches.
Methods:
Engagement strategies were selected from across two research studies with diverse populations: carers of people with Parkinson's disease and Lewy-body dementia and nurses caring for people with intellectual and developmental disabilities on inpatient hospital units. Contextualized within a community engagement framework, we describe the research studies, the engagement strategies used, challenges, accommodations, and adaptations.
Results:
Engagement strategies ranged from consultation to full partnership. Common strategies between studies included adaptations and accommodations, structured methods for soliciting feedback, integration of partner feedback into study design, co-design of intervention, respecting lived experience, creating space for vulnerability, and compensation. Challenges included supporting collaboration through virtual meetings, addressing distress-including feelings of hurt and loss and balancing research and grant requirements with community partner input.
Conclusions:
Both projects represented successes in engagement process and study outcomes, regardless of where they fell on the community engagement continuum. Having practical steps to guide community engagement in research can be valuable to both researchers and community partners.