Hospital Diversity, Equity, and Inclusion Efforts: Perspectives of Patient and Family Advisors.

BACKGROUND AND OBJECTIVES: Patient and family advisory councils are common within children's hospitals. However, lack of diversity among patient and family advisors (PFAs) may result in exclusion of crucial perspectives and perpetuate inequities. We sought to understand PFA perspectives on how children's hospitals should approach: (1) recruitment and support of PFAs from groups at greater risk of health inequities; and (2) development of meaningful partnerships with PFAs or patient and family advisory councils on institutional diversity, equity, and inclusion (DEI) efforts. METHODS: We conducted a qualitative study of PFAs of children's hospitals from communities at greater risk for health inequities based on self-identified race, ethnicity, gender, socioeconomic status, disability, language, or other factors. Focus groups were virtual and group discussions were recorded, transcribed, and analyzed using inductive qualitative analysis. RESULTS: In total, 17 PFAs participated across 5 focus groups (4 in English, 1 in Spanish). We identified 6 themes: (1) PFA diversity is necessary to understand existing health inequities; (2) diversity needs to be considered broadly; (3) recruiting for diverse PFAs requires intentionality, visibility of PFACs within and outside of the hospital, and deliberate connections with families and communities; (4) efforts to increase PFAC diversity must be accompanied by work to develop inclusive environments; (5) diversity efforts require meaningful engagement and equity; and (6) diverse PFACs can enrich DEI efforts but require organizational commitment and follow-through. CONCLUSIONS: Insights from our qualitative study of PFAs can be used by healthcare systems to foster diversity and inclusion in PFACs and advance hospital DEI efforts.

What Do Community Doulas Think About the Future of the Doula Workforce?

INTRODUCTION: Expanding access to doula care is a key strategy for improving the perinatal experiences and health outcomes of birthing people of color in the U.S. This study investigates the future of maternal healthcare in the U.S. from the perspective of doulas and highlights emerging technology and other opportunities related to strengthening the doula workforce. METHODS: The study recruited community doulas from 12 unique U.S. states, ensuring at least half of the doulas predominantly served communities of color. Doulas (N = 26) participated in semi-structured, futures-oriented interviews that explored their experiences providing care during the COVID-19 pandemic and utilization of technology. A subset of doulas (n = 8) were engaged in interactive workshops where they envisioned alternative futures for doula care and childbirth. Interviews and workshops were analyzed using the Framework Method. RESULTS: The COVID-19 pandemic heightened technology use among doulas and increased client accessibility. Social media serves as a unique space for critical community building and client outreach. Doulas reported opportunities to strengthen and mobilize the future workforce: recognizing doula care as a reimbursable service by health insurers, utilizing doula collectives for community practice to decrease burnout, increasing emotional support for doulas, and instilling a chain of learning through mentorship. DISCUSSION: Futures thinking served as a valuable approach for doulas to illuminate the implications of present-day challenges and empowered doulas to design roadmaps toward better futures for doulas and maternal health. Doulas should be engaged as partners to hold a meaningful decision-making role when discussing policies, employment structures, emerging technology, and other aspects of doulas' positioning within the healthcare system.

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.