RPD101 - Aligning pediatric palliative and hospice care with family-reported needs in the home: A clinical utility analysis

Key Message : Improving real-time communication between families and pediatric palliative and hospice teams is essential to aligning clinical care with the day-to-day needs of families of children living with serious illness at home.

Abstract:

Background: Home is the primary site of care for most children and families living with serious illness.(1,2) Families, however, report significant unmet needs at home.(1,3-5) While pediatric palliative and hospice care (PPHC) teams can address these needs, they lack real-time information regarding families’ day-to-day experiences and needs at home.(6,7) Routinely collecting and rapidly sharing care experiences with PPHC teams could enable tailored actions to address families’ priority needs.

Objective: This analysis explored families’ and PPHC clinicians’ perceptions of the clinical utility of a real-time information loop between families at home and their PPHC team.

Methods: Twenty-four parents of children with a serious illness across the U.S. and 11 interdisciplinary outpatient PPHC clinicians provided insights into the perceived acceptability and actionability of real-time, family-reported information via interviews and co-design meetings. We analyzed transcripts using qualitative content analysis. Two of three coders (JB, DH, EM) coded each document, and coders participated in regular debriefing to reach consensus.

Results: Three major themes emerged: 1) Perceived Value: Parents and clinicians saw regular communication about care experiences as a way to improve care; 2) Optimal Implementation: Information needs to be shared with the right clinician in the right way at the right time and include follow up to families, and 3) Usability and Actionability: A spectrum of clinical actionability of family-reported information exists; that is, some needs (e.g., coordinating communication across subspecialty teams, providing sibling support) were perceived as addressable by PPHC teams, but other needs (e.g., home nursing shortages) as outside of PPHC’s locus of control.

Conclusion/Implications: Improving alignment between the care being provided by PPHC teams and families’ dynamic needs at home requires regular, real-time communication between families and their PPHC team. Future studies should investigate, over time, the impact of real-time, family-reported information on PPHC clinical decision-making.

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2. Feudtner C, Kang TI, Hexem KR, et al. Pediatric palliative care patients: A prospective multicenter cohort study. Pediatr. 2011;127(6):1094-1101. doi:10.1542/peds.2010-3225
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6. Rogers MM, Friebert S, Williams CSP, Humphrey L, Thienprayoon R, Klick JC. Pediatric palliative care programs in US hospitals. Pediatr. 2021;148(1):e2020021634. doi:10.1542/peds.2020-021634
7. Weaver MS, Chana T, Fisher D, et al. State of the service: Pediatric palliative and hospice community-based service coverage in the United States. J Palliat Med. 2023;26(11):1521-1528. doi:10.1089/jpm.2023.0204