"there's Just No Way to Help, and They Did." Parents Name Compassionate Care as a New Domain of Quality in Pediatric Home-Based Hospice and Palliative Care
compassion; home-based palliative care; hospice care; pediatric hospice care
Background: To design high-quality home-based hospice and palliative care (HBHPC) systems, it is imperative to understand the perspectives of parents whose children enroll in HBHPC programs. Objective(s): The goal of this project was to identify and define parent/caregiver-prioritized domains of family-centered care in HBHPC by performing semistructured interviews of parents/caregivers ("parents") across Ohio whose children have received HBHPC. We hypothesized that the 10 provider-prioritized domains and their definitions, as identified in our previous research, would be modified and augmented by parents for application in the pediatric HBHPC setting. Method(s): This was a qualitative study utilizing semistructured interviews of bereaved parents of children who were enrolled in a pediatric HBHPC program at the three sites from 2012 to 2016 and parents of children who were currently enrolled in these programs for at least a year. Result(s): Parent-prioritized thematic codes mapped to 9 of the 10 provider-prioritized domains of quality HBHPC; none mapped to the domain "Ethical and Legal Aspects of Care." Although most of the provider-prioritized domains are pertinent to parents, parents defined these domains differently, deepening our understanding and perspective of quality within each domain. An 11th domain, Compassionate Care, was created and defined based on emergent themes. Conclusion(s): Parent/caregiver-prioritized domains of quality in pediatric HBHPC map closely to provider-prioritized domains, but parents define these domains differently. Parents also prioritize Compassionate Care as a new domain of quality in pediatric HBHPC. Measuring the quality of care provided in HBHPC programs through this broader perspective should enable the selection of measures which are truly patient- and family-centered. © Copyright 2020, Mary Ann Liebert, Inc., publishers 2020.
Thienprayoon R; Grossoehme D; Humphrey LM; Pestian T; Frimpong-Manso M; Malcolm H; Kitamura E; Jenkins R; Friebert S
Journal of Palliative Medicine
2020
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).
<a href="http://doi.org/10.1089/jpm.2019.0418" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0418</a>
Defining Provider-Prioritized Domains of Quality in Pediatric Home-Based Hospice and Palliative Care: A Study of the Ohio Pediatric Palliative Care and End-of-Life Network
BACKGROUND: In 2017, the Ohio Pediatric Palliative Care and End-of-Life Network (OPPEN) published nine domains of high-quality care for pediatric home-based hospice and palliative care (HBHPC). Eight domains established by the National Consensus Project (NCP) were validated for pediatric HBHPC, and a ninth domain of "Continuity and Coordination of Care" was added. OBJECTIVE: The aim of this study was to establish definition criteria for each of these domains. DESIGN AND SETTING: Using a modified Delphi technique, providers from the OPPEN were surveyed regarding definitions drawn from the NCP domain criteria. For the ninth domain, new definition criteria were generated de novo based on qualitative responses. RESULTS: Definition criteria were established for the nine domains of quality in HBHPC previously identified. In the course of analysis, Bereavement Care was established as a 10th domain of quality, and definition criteria generated. CONCLUSIONS: This is the first study to define domains of quality for pediatric HBHPC, and the second to leverage the infrastructure of a pediatric HPC statewide consortium toward this work. Future studies are needed to establish parent and patient-prioritized domains of quality in pediatric HBHPC, and to map indicators validated in pediatrics to these domains.
Thienprayoon R; Alessandrini E; Frimpong-Manso M; Grossoehme D
Journal of Palliative Medicine
2018
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).
<a href="http://doi.org/10.1089/jpm.2018.0056" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0056</a>