Pediatric advance directives: parents' knowledge, experience, and preferences
Title
Pediatric advance directives: parents' knowledge, experience, and preferences
Creator
Liberman DB; Pham PK; Nager AL
Identifier
Publisher
Pediatrics
Date
2014
Subject
Child; Cross-Sectional Studies; Female; Humans; Male; Palliative Care; Adult; Attitude to Health; Logistic Models; Prospective Studies; Health Services Needs and Demand; Socioeconomic Factors; end of life; adolescent; Preschool; infant; advance care planning; DNAR; Parents; Parents/px [Psychology]; Advance Directives; Hispanic Americans/sn [Statistics & Numerical Data]; Advance Directives/px [Psychology]; decision making; Attitude; Chronic disease; special-needs children
Description
OBJECTIVES: To explore parents' and caregivers' experience, knowledge, and preferences regarding advance directives (ADs) for children who have chronic illness. METHODS: We conducted a prospective, cross-sectional survey of parents and caregivers of children who have chronic illness. During ambulatory medical visits, participants were asked about previous AD experience and knowledge, future preferences regarding AD discussions, their child's past and current health status, and family demographics. RESULTS: Among 307 participants surveyed, previous AD experience was low, with 117 (38.1%) having heard of an AD, 54 (17.6%) having discussed one, and 77 (25.1%) having known someone who had an AD. Furthermore, 27 (8.8%) participants had an AD or living will of their own, and 8 (2.6%) reported that their chronically ill child had an AD. Previous AD knowledge was significantly more likely among parents and caregivers who had a college degree than those who did not have a high school diploma, yet significantly less likely among primarily Spanish-speaking parents and caregivers than those primarily English-speaking. Interest in creating an AD for the child was reported by 151 (49.2%) participants, and was significantly more likely among families who had more frequent emergency department visits over the previous year. CONCLUSIONS: The limited AD experience and knowledge of parents and caregivers of children who have chronic illness and their interest in creating an AD suggest an unmet need among families of children who have chronic illness, and an opportunity to enhance communication between families and medical teams regarding ADs and end-of-life care.
2014-08
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
URL Address
Citation
Liberman DB; Pham PK; Nager AL, “Pediatric advance directives: parents' knowledge, experience, and preferences,” Pediatric Palliative Care Library, accessed February 10, 2025, https://pedpalascnetlibrary.omeka.net/items/show/14898.