Adapting and responding to a pandemic: Patient and family advisory councils in children\u27s hospitals during COVID-19

This mixed-methods study investigated the effects of the COVID-19 pandemic on Patient and Family Advisory Councils (PFACs) within children’s hospitals in the United States. Specifically, the study sought to understand how PFACs adapted operations as a result of the COVID-19 pandemic, how patient and family advisors (PFAs) were engaged in the response to COVID-19, and the intersection of the COVID-19 pandemic with PFAC diversity, equity, and inclusion. The study consisted of a survey distributed to 228 children’s hospitals, with a 73% response rate, and in-depth interviews with selected survey respondents (n=12). While COVID-19 temporarily disrupted PFAC operations and forced rapid adaptations, most children’s hospital PFACs transitioned successfully to virtual meetings, with 86% reporting that their PFAC met at least once from March to December 2020 and 84% indicating that their PFAC planned to meet as frequently or more frequently than before the pandemic. The majority of respondents (72%) reported that attendance at virtual PFAC meetings was the same as or better than with in-person meetings. Interview participants reported benefits associated with virtual meetings, including the potential ability to recruit and engage PFAs who better reflected the diversity of the patients and families served by the hospitals. Children’s hospitals are well-positioned to be leaders in the field, contributing to the development of new approaches, lessons learned, and best practices moving forward. This is especially true as hospitals continue to navigate the evolving realities of the COVID-19 pandemic, and as PFACs address challenges associated with maintaining diverse, equitable, and inclusive councils. Experience Framework This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens

The intersection of diversity, equity, and inclusion with pediatric Patient and Family Advisory Councils

Patient and family advisory councils (PFACs) advance patient- and family-centered care within children’s hospitals but may not reflect the diversity of the communities they serve. We sought to assess PFAC diversity among children’s hospitals and explore barriers, drivers, and enablers of recruitment, retention, and engagement of patient and family advisors (PFAs) with diverse perspectives and backgrounds. We performed a mixed methods study to evaluate structure, composition, recruitment, and engagement strategies of children’s hospital PFACs. Individuals likely to have knowledge of or responsibility for PFACs at each Children’s Hospital Association (CHA) member hospital were asked to complete an electronic questionnaire. A subset of respondents from hospitals varying in size and region participated in 1-hour virtual interviews. We received valid responses from 166 (73%) of 228 CHA member hospitals. Eighty-eight percent reported having at least one PFAC. Only 21% selected “definitely true” when asked if their PFACs reflected the racial and ethnic diversity of the community served. Twelve respondents from various children’s hospitals participated in qualitative interviews. Five themes emerged: 1) Importance of Diversity in PFAC Membership; 2) Targeted, Personalized Recruitment and Engagement Strategies Facilitate Diverse PFACs; 3) Importance of Supporting PFAs from Diverse Backgrounds; 4) Ample Opportunities to Engage PFAs in Institutional Diversity, Equity, and Inclusion Efforts; and 5) External Factors as Drivers for Change within PFACs. Many PFACs are working to increase diversity, equity, and inclusion, but opportunities to close gaps remain. Findings may inform strategies to promote diversity, equity, and inclusion within PFACs across hospital systems. Experience Framework This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens

Pathway to Measuring Patient and Family Engagement: Prioritizing Engagement Behaviors in the Hospital Setting

Background/Aims: Growing evidence suggests that patient and family engagement (PFE) can help achieve the “Triple Aim” of improving population health and patient experiences of care while reducing costs. One critical gap as we work toward these goals is the lack of a clear approach to PFE measurement to assess associated outcomes and gauge health care performance. In this project, we draw on an existing framework to define behaviors that constitute PFE in the hospital setting and identify a subset of these behaviors that are of high priority for measure development and implementation. Methods: We identified engagement behaviors for hospital leadership, clinicians and patients/families through: a literature scan of publications and existing measures; key informant interviews; and input from an eight-member advisory group that included patients and families, clinicians, measurement experts and hospitals. To prioritize engagement behaviors, we categorized these behaviors into thematic domains, surveyed our advisory group and other experts in PFE and synthesized feedback to select a set of high-priority behaviors for PFE measurement that address multiple domains, are feasible to measure and are important for driving change or increasing accountability. Results: Eight domains of engagement in the hospital setting were prioritized: access to medical record, creating opportunities for engagement, communication, discharge planning, family presence, goal-setting, shared care planning, and transparency. These domains include specific high-priority engagement behaviors at the hospital, clinician and patient levels. For example, priority behaviors in the “access to medical record domain” include: hospitals make medical records easily accessible and involve patients and families in designing medical record access mechanisms and policies; clinicians record patient medical information in plain language (free of jargon and abbreviations); and patients access and use their medical record. Conclusion: PFE measurement is at a nascent stage. To our knowledge, this is the first work to systematically identify behaviors that constitute PFE in the hospital setting and prioritize those that are feasible and important to measure. The resulting matrix of high-priority measurement behaviors mapped against domains and levels of PFE provides a comprehensive approach for measuring PFE in the hospital setting, including the selection and development of measures