Perspectives on quality of life among disability-related organization leaders serving individuals with paralysis

Abstract

Understanding how the Christopher & Dana Reeve Foundation Quality of Life grant recipients define quality of life has value in helping to further develop and refine the literature on this topic for individuals with spinal cord injury and/or organizations working to serve and/or support individuals with spinal cord injury. The purpose of this organizational evaluation project's evaluation activities was to engage with Quality of Life (QOL) Grant recipients, namely leaders at disability-related organizations across the United States, to better understand their definitions and operationalization of the term, “quality of life”. To do so systematically, researchers compiled a list of all QOL grant recipients from two 2016 grant cycles and divided them into three categories based on the award amount. From these categories, we randomly selected organizations to invite to provide input. Phone interviews were completed with 19 grant recipients. A thematic content analysis was completed across the resulting transcripts using MAXQDA software. The sub-themes identified by researchers included: community connection, independence, self-determination, caregiver communication, and including caregivers in programs. Our analysis demonstrates the importance of both community and caregiver relationships to organizations that focus on QOL for people with SCI. Novel findings suggest the importance of community and connection as well as a reframing of both the constructs of independence and control within QOL. Lessons for evaluators are also provided.