Diversity, Equity, and Inclusion in Patient and Family Advisory Councils: Advancing Best Practice in Children's Hospitals.

INTRODUCTION: This qualitative research study explored practices that support and advance diverse membership in Patient and Family Advisory Councils (PFACs) in children's hospitals and the involvement of PFACs in organization-level diversity, equity, and inclusion work. METHOD: This study consisted of a focused literature review and 17 key informant interviews. The study sought to identify important learnings about (1) recruiting and supporting patient and family advisors (PFAs) from historically marginalized populations and (2) ways to develop and sustain meaningful partnerships with PFAs and PFACs in diversity, equity, and inclusion work. RESULTS: The study findings highlighted a number of best practices for hospitals to adopt, including more actively reaching out to communities served, addressing barriers to participation through approaches and structures such as specialty PFACs and "tiered" options for participation by PFAs, and co-creation of inclusive environments. DISCUSSION: To move forward with this work, additional research, true commitment from health care organizations, and shared guidance and tools for the field are needed.

Parent Perspectives: Part 2-Considerations for the Transition Home Post-NICU Discharge.

This paper is part two of a series of papers written by the mothers of Neonatal Intensive Care Unit (NICU) graduates. The companion paper, "Parent Perspectives: Part 1-Considerations for Changing the NICU Culture", considers all aspects of the NICU experience and provides recommendations for interventions and improvements from a life-course perspective while families are in the NICU. In part two, the focus is the transition home post-NICU stay. The time after NICU discharge is a critical and sensitive developmental period for NICU babies and their families, and an important life course transition. This paper provides a parent's perspective of how to improve the transition home post-NICU stay. Our perspectives draw on the Life Course Health Development approach, which regards health as an active process that is developed over time based on a person's internal biologic and physiologic systems, their external environment and circumstances, and the interactions or relationships between them. This paper describes a collaborative care model where parents and their healthcare teams work together to develop shared care plans. It also describes how we can build trust and family capacity to support long-term care, ensure family well-being, and link families to needed resources and support that can ease the transition from the NICU back to the home and optimize family health trajectories.

Parent Perspectives: Part 1-Considerations for Changing the NICU Culture.

While publications that aim to reflect the parent perspective are increasingly common in the medical literature, few are authored by parents in their own words. As mothers with lived and professional experience in the Neonatal Intensive Care Unit (NICU), we believe this perspective is vital to improving health outcomes. We are writing from a life course health development framework that regards health as an active process that develops over time with the integration of physical, social, emotional, and relational components. Health development trajectories are shaped by the family and community ecosystems that surround each child. This means that the child's ability to thrive is strongly linked to the family's health and well-being. These links are not being given sufficient attention in clinical practice. Psychological distress, trauma, and grief are common family experiences in the NICU. Left unaddressed, they can negatively impact parent-child bonding. Drawing on life course principles, we make a series of recommendations for changes to practice to enable NICUs to better serve children and families, and better prepare families for the post-NICU experience. These include setting a positive tone in the NICU, creating a nurturing, personalized environment; addressing the social determinants of health; supporting families to develop a 'growth' mindset; and communicating in an optimistic, positive manner. Building trust is key to ensuring families feel supported and can be promoted through establishing equitable collaborative models of care. Peer support, doulas, and community health worker engagement can facilitate early interactions crucial to the child's developmental progress and family healing.

The State of North Carolina's Perinatal Health.

In working to improve the health of North Carolinians, a critical focus starts with our mothers and infants and their surrounding communities. North Carolina's perinatal outcomes, as evidenced by maternal morbidity and mortality, infant mortality, preterm births, and the larger context of lifelong physical and mental health of our citizens, offer areas for improvement and policy implications. In addition, the unacceptable disparities that remain despite some overall improvement in outcomes warrant full attention. This issue of the NCMJ highlights the state of perinatal health in North Carolina; the importance of a risk-appropriate perinatal system of care; the opportunities for supporting our parents, children, and families; and how we as a state and as a community can come together to improve the safety and experience of giving birth in North Carolina and beyond.