Participation: a comparative analysis of multiple rehabilitation stakeholders' perspectives.

Abstract

OBJECTIVE: To examine how participation is conceptualized by different rehabilitation stakeholder groups. DESIGN: Qualitative case study design. SUBJECTS: A total of 148 participants from different stakeholder groups in 2 US states and the District of Columbia. Stakeholders included people with disabilities (n = 63), caregivers (n = 28), rehabilitation professionals (n = 32), funders (n = 10), and policy makers (n = 15). METHODS: Eighteen focus groups were conducted to examine what participation means, how it is conceptualized, and the barriers to realizing full participation. Focus groups were transcribed verbatim; transcripts were analyzed using a constructivist grounded theory approach. RESULTS: Stakeholders agreed on 3 primary domains of participation: (i) productivity and economic participation; (ii) social participation and relationships; and (iii) leisure/recreational participation. Participation within each domain was characterized by its diversity, individuality and environmental influences. Differences emerged in the emphasis stakeholders placed on the relevance of the participation domains in the lives of people with disabilities. Stakeholders' emphasis was influenced by their roles within the rehabilitation process and created distinct needs for participation outcome measures. CONCLUSION: While there was agreement about what constitutes participation, stakeholders emphasized different aspects of participation based on their positions in the rehabilitation process. Recommendations are offered for integrating study findings into the development of new participation measures.