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

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.

Initial factor exploration of disability identity.

PURPOSE/OBJECTIVE: This article describes the initial factor exploration of disability identity and preliminary psychometric characteristics based on an adult self-report tool. Disability was defined broadly, and the sample included individuals with visible and/or hidden disabilities across many disability groups (i.e., physical, intellectual, learning, mental illness). METHOD: Items were developed (n = 102) and a pilot measure was administered to a sample of adults with disabilities (n = 566). An exploratory factor analysis (EFA) using the mean and variance adjusted weighted least squares (WLSMV) estimator was conducted. The resulting items were sent to expert reviewers for evaluation. RESULTS: Following the exploratory analyses, 37 items were retained that made up four factors: internal beliefs about own disability and the disability community, anger and frustration with disability experiences, adoption of disability community values, and contribution to the disability community. The pilot measure aligned well with the theoretical framework that guided its development. DISCUSSION/CONCLUSION: This factor exploration is a contribution to a growing body of literature supporting, and investigating, disability identity development. This work presents a more comprehensive understanding of disability identity development. Armed with a better understanding, this will serve as a basis to inform future scale development and validation. After this validation work is completed, there is the potential to apply findings to tailor interventions and clinical work, so that psychologists and rehabilitation professionals may be better prepared to meet the developmental needs of disabled clients. (PsycINFO Database Record (c) 2020 APA, all rights reserved).

Disability identity and allyship in rehabilitation psychology: Sit, stand, sign, and show up.

PURPOSE/OBJECTIVE: The purpose of this conceptual paper was to put forth a call for rehabilitation practitioners to consider their role in developing disability identity in their clients, and to understand this action as a form of allyship toward the disability community. METHOD: This conceptual paper is organized to engage existing disability and disability-identity literature and its clinical implications. Practical tools and skills are offered for rehabilitation practitioners to develop disability identity and engage in disability allyship. RESULTS: An overview of disability identity and its relationship to clinical practice is presented by way of a literature review. Conversation starters and two activities are presented for rehabilitation practitioners to develop and engage with clients about their disability identities. Descriptions of allyship actions for practitioners are presented. DISCUSSION/CONCLUSION: In this conceptual paper, we framed disability in terms of both the medical and social models and argues that thinking about disability identity requires attention to the social model of disability. This attention is important, because it allows practitioners to think about themselves as allies to a particular community, rather than experts who must only "fix" clients' disabilities to elicit positive identity development. This shift toward allyship requires attention, engagement, and openness to see clients simultaneously as individuals and as members of a powerful, diverse community with a unique identity experience. (PsycINFO Database Record (c) 2019 APA, all rights reserved).