Program adaptation for the real world: Using principles of community-based participatory research to create culturally-adapted programs for underserved communities

Self-management programs have been created for a range of chronic conditions and have been found in a number of cases to be effective. However, a need has been identified for the adaptation of such programs for diverse cultural and ethnic groups, with the goal of increasing the uptake and therefore the reach of these programs. This research used principles of community-based participatory research to modify an evidence-based program for self-management of arthritis pain, the Arthritis Foundation Self-Help program (AFSH). A community-university researcher partnership was created with three senior centers in New York City in order to understand how the AFSH program might be modified to meet the needs of specific groups of older adults. Each center respectively served White, Hispanic, or African American older adults. A systematic approach was taken to program modification, which included 1) creation of a community steering committee; 2) delivery and evaluation of the standard AFSH program to 113 participants across the three centers; 3) weekly interviews with participants of the standard program regarding content and areas for improvement; 4) focus group sessions with participants and instructors regarding adaptation; and 5) shared decision-making by community members and content experts on how best to implement the adaptation suggestions. This process resulted in culturally-adapted programs that maintained the principal program characteristics while incorporating modifications suggested by community partners. We review the multi-step adaptation process, present participants' suggestions for modification, describe the revised program curriculum, and present findings from the evaluation of the adapted program.