Improving the quality of end-of-life care in the pediatric intensive care unit: parents' priorities and recommendations

Title

Improving the quality of end-of-life care in the pediatric intensive care unit: parents' priorities and recommendations

Creator

Meyer EC; Ritholz MD; Burns JP; Truog RD

Publisher

Pediatrics

Date

2006

Subject

Child; Humans; infant; Parent-Child Relations; Questionnaires; Professional-Family Relations; Communication; Pediatric; adolescent; Preschool; Non-U.S. Gov't; Research Support; PedPal Lit; decision making; infant; Newborn; Parents/psychology; Intensive Care Units; Palliative Care/psychology; Terminal Care/psychology

Description

OBJECTIVE: Despite recognition that dying children and their families have unique palliative care needs, there has been little empirical inquiry of parent perspectives to improve the quality of end-of-life care and communication. The purpose of this study was to identify and describe the priorities and recommendations for end-of-life care and communication from the parents' perspective. METHODS: This was a qualitative study based on parental responses to open-ended questions on anonymous, self-administered questionnaires, conducted at 3 pediatric ICUs in Boston, Massachusetts. Fifty-six parents whose children had died in PICUs after withdrawal of life support participated in this study. We measured parent-identified priorities for end-of-life care and communication. RESULTS: Parents identified 6 priorities for pediatric end-of-life care including honest and complete information, ready access to staff, communication and care coordination, emotional expression and support by staff, preservation of the integrity of the parent-child relationship, and faith. CONCLUSIONS: Parental priorities and recommendations offer simple yet compelling guidance to improve pediatric end-of-life clinical practice and research.
2006

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).

Type

Journal Article

Citation List Month

Backlog

Pages

649-57

Issue

3

Volume

117

Citation

Meyer EC; Ritholz MD; Burns JP; Truog RD, “Improving the quality of end-of-life care in the pediatric intensive care unit: parents' priorities and recommendations,” Pediatric Palliative Care Library, accessed August 6, 2021, https://pedpalascnetlibrary.omeka.net/items/show/13181.

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