Educational Priorities for Providing End-of-Life Care: Parent Perspectives

Title

Educational Priorities for Providing End-of-Life Care: Parent Perspectives

Creator

Arora G; Caliboso M; Baird J; Rusch R; Greenman J; Obregon D; Serwint JR

Publisher

Pediatrics

Date

2021

Subject

interpersonal & communication skills; Medical education; Palliative Medicine; Parent perspectives; Pediatric

Description

OBJECTIVES: Partnership with parents is a tenet of pediatric medicine; however, initiatives to include parents in education and research have been limited. Through focus groups, we included parents at the beginning of curriculum development by asking them to identify the priorities, existing supports, and opportunities for improvement in their child's end-of-life (EOL) care. METHODS: English and Spanish-speaking bereaved parents whose child had been cared for by the palliative care team and had died >18 months before the study initiation were invited to participate. In-person focus groups and a follow-up phone call were used to elicit opinions and capture a diversity of viewpoints. Themes were identified and clustered through an iterative analytic process. RESULTS: Twenty-seven parents of 17 children participated, with the total sample size determined by thematic saturation. Four themes were identified as important to parents in their child's EOL care: (1) honoring the role of the parent, (2) having confidence in the care team, (3) receiving gestures of love and caring, and (4) navigating logistic challenges. CONCLUSIONS: We asked parents to be partners in guiding priorities for health care education and professional development to improve pediatric EOL care. In addition to strengthening skills in communication, confidence in the team, and compassion, parents in this study identified a need for hospital staff to anticipate financial and social stressors and provide supportive resources more readily. Additionally, parents described clinical and nonclinical staff as providing support, suggesting that a multidisciplinary and interdisciplinary curriculum be developed to improve pediatric EOL care.

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

November 2021 List

Collection

Citation

Arora G; Caliboso M; Baird J; Rusch R; Greenman J; Obregon D; Serwint JR, “Educational Priorities for Providing End-of-Life Care: Parent Perspectives,” Pediatric Palliative Care Library, accessed May 23, 2022, https://pedpalascnetlibrary.omeka.net/items/show/17712.

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