What do parents value regarding pediatric palliative and hospice care in the home setting?

Title

What do parents value regarding pediatric palliative and hospice care in the home setting?

Creator

Boyden J Y; Ersek M; Deatrick J A; Widger K; LaRagione G; Lord B; Feudtner C

Publisher

Journal of Pain and Symptom Management

Date

2020

Subject

discrete choice experiment; home-based care; pediatric hospice care; pediatric palliative care

Description

CONTEXT: Children with life-shortening serious illnesses and medically complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting (PPHC@Home) families value the most. OBJECTIVE: To explore how parents rate and prioritize domains of PPHC@Home as the first phase of a larger study that developed a parent-reported measure of experiences with PPHC@Home. METHODS: Twenty domains of high-value PPHC@Home, derived from the National Consensus Project's Guidelines for Quality Palliative Care, the literature, and a stakeholder panel, were evaluated. Using a discrete choice experiment, parents provided their ratings of the most and least valued PPHC@Home domains. We also explored potential differences in how subgroups of parents rated the domains. RESULTS: Forty-seven parents participated. Overall, highest-rated domains included Physical Aspects of Care: Symptom Management, Psychological/EmotionalSupportfor the Child, and Care Coordination. Lowest-rated domains included Spiritual and Religious Aspects of Care and Cultural Aspects of Care. In exploratory analyses, parents who had other children rated the Psychological/Emotional Aspects of Care for the Sibling(s) domain significantly higher than parents who did not have other children (P=0.02). Furthermore, bereaved parents rated the CaregiverSupportat the End of Life domain significantly higher than parents who were currently caring for their child (P=0.04). No other significant differences in domain ratings were observed. CONCLUSIONS: Knowing what parents value most about PPHC@Home provides the foundation for further exploration and conversation about priority areas for resource allocation and care improvement efforts.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

September 2020 List

Collection

Citation

Boyden J Y; Ersek M; Deatrick J A; Widger K; LaRagione G; Lord B; Feudtner C, “What do parents value regarding pediatric palliative and hospice care in the home setting?,” Pediatric Palliative Care Library, accessed June 19, 2021, https://pedpalascnetlibrary.omeka.net/items/show/17191.

Social Bookmarking