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).
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).
Factors Associated With Use Of U.S. Community-based Palliative Care For Children With Life-limiting Or Life-threatening Illnesses And Their Families: An Integrative Review
Creator
Boyden J Y; Curley M A Q; Deatrick JA; Ersek M
Identifier
10.1016/j.jpainsymman.2017.04.017
Publisher
Journal Of Pain & Symptom Management
Date
2017
Subject
Children And Families; Community; Home; Integrative Review; Life-limiting/life Threatening Illness; Palliative Care
Description
CONTEXT: As children with life-limiting and life-threatening illnesses live longer, challenges to meeting their complex health care needs arise in homes and communities, as well as in hospitals. Integrated knowledge regarding community-based pediatric palliative care (CBPPC) is needed to strategically plan for a seamless continuum of care for children and their families. OBJECTIVE: The purpose of this integrative review paper is to explore factors that are associated with the use of CBPPC for U.S. children with life-limiting and life-threatening illnesses and their families. METHODS: A literature search of PubMed, CINAHL, Scopus, Google Scholar, as well as an ancestry search, to identify empirical studies and program evaluations published between 2000 and 2016. The methodological protocol included an evaluation of empirical quality and explicit data collection of synthesis procedures. RESULTS: Forty peer-reviewed quantitative and qualitative methodological interdisciplinary papers were included in the final sample. Patient characteristics such as older age and a solid tumor cancer diagnosis, and interpersonal factors such as family support were associated with higher CBPPC use. Organizational features were the most frequently discussed factors that increased CBPPC, including the importance of inter-professional hospice services and inter-organizational care coordination for supporting the child and family at home. Lastly, geography, concurrent care and hospice eligibility regulations, and funding and reimbursement mechanisms were associated with CBPPC use on a community and systemic level. CONCLUSION: Multilevel factors are associated with increased CBPPC use for children with life-limiting or life-threatening illnesses and their families in the U.S.
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
October 2017 List
Notes
1873-6513 Boyden, Jackelyn Y Curley, Martha A Q Deatrick, Janet A Ersek, Mary Journal Article Review United States J Pain Symptom Manage. 2017 Aug 11. pii: S0885-3924(17)30348-2. doi: 10.1016/j.jpainsymman.2017.04.017.