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Text
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URL Address
<a href="http://doi.org/10.1542/peds.2013-3124" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2013-3124</a>
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Title
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Pediatric advance directives: parents' knowledge, experience, and preferences
Publisher
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Pediatrics
Date
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2014
Subject
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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
Creator
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Liberman DB; Pham PK; Nager AL
Description
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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
Identifier
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<a href="http://doi.org/10.1542/peds.2013-3124" target="_blank" rel="noreferrer">10.1542/peds.2013-3124</a>
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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
The nature or genre of the resource
Journal Article
2014
Adolescent
Adult
Advance Care Planning
Advance Directives
Advance Directives/px [Psychology]
Attitude
Attitude To Health
Backlog
Child
Chronic Disease
Cross-sectional Studies
Decision Making
DNAR
End Of Life
Female
Health Services Needs And Demand
Hispanic Americans/sn [Statistics & Numerical Data]
Humans
Infant
Journal Article
Liberman DB
Logistic Models
Male
Nager AL
Palliative Care
Parents
Parents/px [psychology]
Pediatrics
Pham PK
Preschool
Prospective Studies
Socioeconomic Factors
Special-needs Children