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Text
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Citation List Month
September 2017 List
Notes
<p>Dallas, Ronald H Kimmel, Allison Wilkins, Megan L Rana, Sohail Garcia, Ana Cheng, Yao I Wang, Jichuan Lyon, Maureen E Adolescent Palliative Care Consortium. Using Smart Source Parsing Dec e20161854 peds.2016-1854</p>
Dublin Core
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Title
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Acceptability Of Family-centered Advanced Care Planning For Adolescents With Hiv
Publisher
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Pediatrics
Date
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2016
Subject
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Adolescent Health Services/sn [statistics & Numerical Data]; Advance Care Planning; Family/px [psychology]; Hiv Infections/th [therapy]; Patient Acceptance Of Health Care/sn [statistics & Numerical Data]; Adolescent; Family Nursing; Female; Hiv Infections/px [psychology]; Humans; Male; Prospective Studies; Surveys And Questionnaires; United States; Young Adult
Creator
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Dallas R H; Kimmel A; Wilkins M L; Rana S; Garcia A; Cheng Y I; Wang J; Lyon M; Adolescent Palliative Care Consortium
Description
An account of the resource
BACKGROUND AND OBJECTIVE: Small pilot studies support the appropriateness of engaging adolescents with chronic or life-limiting illnesses in pediatric advance care planning (pACP). We do not yet know if pACP is acceptable, feasible, and worthwhile, even if emotionally intense, in a fully powered randomized controlled trial. METHODS: We conducted a prospective 2-arm randomized controlled trial at 6 US urban hospitals. Adolescent/family member dyads were randomized to receive the 1-session-a-week 3-session FAmily-CEntered Advance Care Planning (FACE) pACP intervention (1, ACP Survey; 2, Goals of Care Conversation/Treatment Preferences; 3, Completion of Advance Directive) or active comparator (1, Developmental History; 2, Safety Tips; 3, Nutrition/Exercise). The Satisfaction Questionnaire was administered to participants independently after each session by a blinded research assistant. RESULTS: We enrolled 53% of eligible participants and intervened with 97 adolescent/family dyads. Adolescents ranged in age from 14 to 21 years; 54% were male individuals; 93% African American; and 73% perinatally infected. Attendance was 99% for all 3 sessions in each arm. At session 3, FACE adolescents and family dyad members, respectively, found the session useful (98%, 98%) and helpful (98%, 100%), despite feelings of sadness (25%, 17%). FACE adolescents' improvement in the total subscale A score (useful, helpful, like a load off my mind, satisfied, something I needed to do, courageous, worthwhile) was better than control adolescents at session 3 (beta = 1.16, P = .02). There were no adverse events. CONCLUSIONS: FACE enabled worthwhile conversations, while simultaneously eliciting intense emotions. No participants withdrew, 99% of those enrolled completed each session, and there were no adverse events, evidence of pACP's feasibility, acceptability, and safety.
Identifier
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10.1542/peds.2016-1854
Rights
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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).
2016
Adolescent
Adolescent Health Services/sn [statistics & Numerical Data]
Adolescent Palliative Care Consortium
Advance Care Planning
Cheng Y I
Dallas R H
Family Nursing
Family/px [psychology]
Female
Garcia A
Hiv Infections/px [psychology]
Hiv Infections/th [therapy]
Humans
Kimmel A
Lyon M
Male
Patient Acceptance Of Health Care/sn [statistics & Numerical Data]
Pediatrics
Prospective Studies
Rana S
September 2017 List
Surveys And Questionnaires
United States
Wang J
Wilkins M L
Young Adult