Pediatric Patient and Family Advisory Councils: A Guide to Their Development and Ongoing Implementation

Abstract

BACKGROUND Patient and family engagement is increasingly recognized in the care of children with complex health conditions. Through the implementation of Patient and Family Advisory Councils (PFACs), health-care institutions are working to improve patient care by nurturing partnerships among patients/families, managers, and clinicians. Despite the potential for PFACs, empirical research about their implementation remains scarce. OBJECTIVE To address this gap, this study explored the recruitment, retention, and implementation strategies used by Canadian PFACs. DESIGN We used a qualitative descriptive design. PARTICIPANTS We interviewed 10 spokespersons from Canadian PFACs. RESULTS We found themes within 2 stages of implementation. The first stage, getting PFACs started, included 4 themes: (1) using evolving recruitment methods, (2) preparing for effective participation, (3) ensuring diversity within PFACs, and (4) preparing terms of reference. The second stage involved strategies to support ongoing PFACs implementation and included 1 overall theme: facilitating optimal PFACs participation. The underlying link between themes was that establishing/maintaining PFACs is an ongoing learning curve. CONCLUSION Our findings have the potential to inform new and existing PFACs.