Community-Based Pediatric Palliative Care: How Services Support Children's and Families' Quality of Life.

Abstract

<b><i>Background:</i></b> The Massachusetts Department of Public Health's Pediatric Palliative Care Network (PPCN) provides Community-Based Pediatric Palliative Care (CBPPC) to children with life-limiting conditions and their families. CBPPC services aim to improve children and families' quality of life (QOL). <b><i>Objectives:</i></b> To identify perceived domains of QOL important for children and families and to understand whether and how CBPPC supports QOL. <b><i>Design:</i></b> A community-based participatory research framework was used to develop recruitment and data collection materials for eight focus groups and seven interviews. Collected data were transcribed and analyzed with an inductive approach. <b><i>Setting/Subjects:</i></b> A convenience sample of 33 PPCN caregivers, 20 providers, and seven key informants, including policymakers, community organizations, and hospital-based clinicians, were interviewed virtually in the United States. <b><i>Measurements:</i></b> Perceived QOL domains for children and families, respectively, and perceived impact of CBPPC services on QOL. <b><i>Results:</i></b> Reported QOL domains described as important for children were socialization/community integration and accessibility; expression/play; and physical wellness. Control or autonomy, psycho-emotional wellness, and self-care were identified as important for families. Clinical services were described as "integral to mental health" through offered spiritual support; advocacy in the community; and education. PPCN's integrative services were noted as distractions from pain and helped improve communication and bonding. Sibling support and bereavement care were also mentioned as impactful on QOL. <b><i>Conclusions:</i></b> Family-centered CBPPC was described as supportive of children's and families' QOL. Future studies should consider using population-based QOL measures, leveraging the QOL domains identified through this analysis and other outcome measures in a cost-effectiveness analysis.