Longitudinal study of social participation and well-being among persons with spinal cord injury and their partners (pro-WELL)

PURPOSE: Social participation is an important determinant of well-being. Among persons with disabilities, and with spinal cord injury (SCI) in particular, opportunities for social participation are restricted and may impact well-being. The longitudinal pro-WELL study aims to investigate associations of 2 major domains of social participation with well-being: (1) availability and quality of close social relationships and (2) acting in core social roles (eg, paid work). The joint inclusion of persons with SCI and their partners is a major innovative aspect of this study enabling an in-depth analysis of interpersonal dynamics in coping with disability. PARTICIPANTS: Pro-WELL is a nested project of the Swiss Spinal Cord Injury Cohort Study (SwiSCI) and involves community-dwelling persons aged 30–65 with SCI and their partners living in Switzerland. Baseline data were collected from mid-2015 to early 2016 by telephone interviews and questionnaires. The first and second follow-up assessments are scheduled with a 6 months interval. FINDINGS TO DATE: The baseline sample consists of 133 persons with SCI and their partners. We provide an overview of baseline characteristics and well-being and describe recruitment outcomes and participation rates. A comprehensive non-response analysis demonstrates adequate representation of the source population with negligible selection bias regarding sociodemographic and lesion characteristics. FUTURE PLANS: The prospective data collection and analysis of month 6 and 12 assessments are ongoing and tests of the main research hypotheses will be performed. Findings will be disseminated through peer-reviewed journals and scientific conferences. A workshop and a newsletter on study findings are proposed to feed back findings to participants and other stakeholders.