Participation in People Living With Spinal Cord Injury in Switzerland: Degree and Associated Factors

Abstract

Objective: To describe different domains of participation such as productive, leisure and social activities and describe sociodemographic and spinal cord injury (SCI)-related characteristics that are associated with participation in these domains in a large sample of community-dwelling individuals with SCI in Switzerland.

Design: Cross-sectional population-based survey within the Swiss Spinal Cord Injury Cohort Study. Participation in major life domains was measured by the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation). Univariable unconditional analysis and unbiased recursive partitioning were used to identify the predominant associations of sociodemographic and SCI-related characteristics with multiple dimensions of participation.

Setting: Community.

Participants: Swiss residents aged 16 years or older and living with traumatic or nontraumatic SCI (N=1549).

Interventions: Not applicable.

Main outcome measure: The USER-Participation, a 32-item self-report questionnaire with 3 scales (Frequency, Restrictions, and Satisfaction) to assess key domains of participation (productive, leisure, social).

Results: Frequency (median 34.5 out of 100) in productive, outdoor leisure, and social activities was reduced with distinctive perceived restrictions in work and education, sports, and partner relationships. Domestic leisure activities (65.4%) and maintaining social relationships (76.1%) were those activities most often performed and with least perceived restrictions. Participants were generally satisfied with their current daily life activities. Lower scores across all participation scales were associated with more severe SCI, higher age, being female, not having a partner, and lower level of education.

Conclusions: This study provides a thorough analysis of participation in major life domains of individuals with SCI in Switzerland. Different risk groups for reduced levels in participation in productive, leisure, and social activities were identified. This population-based evidence is instrumental to the better targeting of rehabilitation and policy interventions that aim to improve community participation.

Keywords: Community participation; Rehabilitation; Social participation; Spinal cord injuries.