A critical step in developing evidence-informed strategies: Focus groups with youth and young adults with disabilities and their families

BACKGROUND: There is a lack of inclusive, evidence-based physical activity (PA) and nutrition health promotion programs for youth and young adults with disabilities (YYWD).  Evidence-based health promotion programs are inherently developed and tested with non-disabled individuals, thus limiting their effectiveness for individuals with disabilities.  To address this issue, a novel set of methods and criteria was created to adapt evidence-based obesity prevention strategies for YYWD.  A critical element of the methodology was the completion of separate focus groups (FG) for (1) YYWD and (2) their families to determine access and barriers to physical activity (PA) and nutrition in their communities. METHODS: FG were conducted in California and Alabama.  Each FG included 6-10 participants and lasted approximately one hour.  A semi-guided format, with open ended questions was utilized.  Questions were related to their experiences with PA and nutrition access in their communities.   Content analysis was conducted to identify themes and patterns.  RESULTS: Main themes identified included: (1) barriers to PA and nutrition in schools, (2) lack of accessible, inclusive programs in their communities, (3) a lack of knowledge on strategies to overcome these barriers, and (4) ways currently used to overcome barriers.  CONCLUSION: Existing and future community-based health promotion programs need to be adapted to be inclusive of YYWD.  Further, future research needs to include YYWD and their families in the process of adapting evidence-based, health promotion programs. The results from the FG will help inform the adaptation process for existing and future health promotion guidelines to be inclusive of YYWD.