Background: Recent trends indicate research targeting outcomes of importance to people with disabilities, such as spinal cord injury (SCI), may be best informed by those individuals; however, there are very few published rehabilitation intervention studies that include people with disabilities in the research process in a role beyond study participant.
Objective: To describe a community-based participatory research (CBPR) approach to the development and pilot testing of an intervention using community-based Peer Navigators with SCI to provide health education to individuals with SCI, with the goal of reducing preventable secondary conditions and rehospitalizations, and improving community participation.
Methods: A CBPR framework guides the research partnership between academic researchers and a community-based team of individuals who either have SCI or provide SCI-related services. Using this framework, the processes of our research partnership supporting the current study are described including: partnership formation, problem identification, intervention development, and pilot testing of the intervention. Challenges associated with CBPR are identified.
Results: Using CBPR, the SCI Peer Navigator intervention addresses the partnership's priority issues identified in the formative studies. Utilization of the framework and integration of CBPR principles into all phases of research have promoted sustainability of the partnership. Recognition of and proactive planning for challenges that are commonly encountered in CBPR, such as sharing power and limited resources, has helped sustain our partnership.
Conclusions: The CBPR framework provides a guide for inclusion of individuals with SCI as research partners in the development, implementation, and evaluation of interventions intended to improve outcomes after SCI.
Keywords: Community-based participatory research; Intervention; Navigation; Secondary conditions; Spinal cord injury.
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