title: Longitudinal study of social participation and well-being among persons with spinal cord injury and their partners (pro-WELL).
abstract: 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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Swiss Paraplegic Research, Nottwil, Switzerland.
authors.forename: Christine
authors.initials: C
authors.lastname: Fekete
authors.affiliation: Swiss Paraplegic Research, Nottwil, Switzerland.|Department of Health Sciences and Health Policy, University of Lucerne, Lucerne, Switzerland.
authors.forename: Martin W G
authors.initials: MW
authors.lastname: Brinkhof
authors.affiliation: Swiss Paraplegic Research, Nottwil, Switzerland.|Department of Health Sciences and Health Policy, University of Lucerne, Lucerne, Switzerland.
authors.forename: Hannah
authors.initials: H
authors.lastname: Tough
authors.affiliation: Faculty of Medicine, Senior Professorship 'Work Stress Research', University of Duesseldorf, Life-Science-Center, Duesseldorf, Germany.
authors.forename: Johannes
authors.initials: J
authors.lastname: Siegrist
mesh_terms: D000328:Adult; D000368:Aged; D005260:Female; D006801:Humans; D057187:Independent Living; D008137:Longitudinal Studies; D008297:Male; D008603:Mental Health; D008875:Middle Aged; D011446:Prospective Studies; D012380:Role; D012649:Self Concept; D020377:Self Efficacy; D058992:Social Participation; D013119:Spinal Cord Injuries / Q000523:psychology*; D018454:Spouses / Q000523:psychology*; D013557:Switzerland
keywords: Caregiver; Non-response analysis; Participation rates; Spinal cord injury; Wellbeing