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Pediatric Patient and Family Advisory Councils: A Guide to Their Development and Ongoing Implementation
Julie Richard1, Rima Azar1, Shelley Doucet2
1Psychobiology of Stress & Health Lab and NaviCare/SoinsNavi, Mount Allison University, New Brunswick, Canada.
Insights
Establishing and maintaining Patient and Family Advisory Councils (PFACs) involves ongoing learning. Strategies for recruitment, retention, and effective participation are key for successful implementation in pediatric healthcare.
Area of Science:
- Pediatric Healthcare
- Patient Engagement
- Health Services Research
Background:
- Patient and family engagement is crucial for children with complex health needs.
- Patient and Family Advisory Councils (PFACs) aim to improve care through partnerships.
- Empirical research on PFAC implementation is limited.
Purpose of the Study:
- To explore recruitment, retention, and implementation strategies of Canadian PFACs.
- To address the scarcity of empirical research on PFACs.
- To provide insights for establishing and maintaining effective PFACs.
Main Methods:
- Qualitative descriptive study design.
- Interviews with 10 spokespersons from Canadian PFACs.
Main Results:
- Implementation occurs in two stages: initiation and ongoing support.
- Key themes for initiation include recruitment, preparation, diversity, and terms of reference.
- Facilitating optimal participation is crucial for ongoing PFAC success.
Conclusions:
- Findings offer practical guidance for new and existing PFACs.
- Successful PFAC implementation requires continuous learning and adaptation.
- Enhancing patient and family engagement through PFACs can improve healthcare.
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.
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