Family Members’ Perspectives on Patient Participation in Spinal Cord Injury Rehabilitation

Purpose: To examine the importance and experiences of patient participation in spinal cord injury (SCI) rehabilitation from the perspective of family members, and compared with patients’ views. Method: Family members (N=83) and discharged patients with SCI (N=141) completed the Patient Participation in Rehabilitation Questionnaire (PPRQ), assessing the importance and experiences of the domains Respect and integrity; Planning and decision-making; Information and knowledge; Motivation and encouragement; and Involvement of family. Importance ratings were compared between all family members and patients, and experience ratings were compared between patient-family dyads (N=74). Results: Both family members and patients rated all participation domains as very or extremely important (m ≥4.0 of max 5). Family members rated all domains as slightly more important than did patients; however, patients rated Planning and decision-making more important that the family members (Δ=0.20; p<0.01). No significant differences were found between patients and family members regarding experience ratings and agreement was substantial (ICC=0.63-0.80). Conclusions: Current guidelines recommend involvement of family members in SCI care and rehabilitation. This study shows that family members, and patients alike, also considered their involvement as very important and that they were often given opportunities to be involved. Moreover, patients and family members shared perceptions of conditions necessary for facilitating and promoting participation. Although considerable congruence was found between family members’ and patients’ assessments, agreement was not perfect. As incongruence between patients and family members regarding the quality and delivery of care may disturb the rehabilitation process and its outcomes, it is important that differences in perspectives be identified and successfully resolved. The PPRQ may be useful in assessing patients’ and family members’ views of patient participation and in detecting disparities between them.