Acceptability Of Family-centered Advanced Care Planning For Adolescents With Hiv

Title

Acceptability Of Family-centered Advanced Care Planning For Adolescents With Hiv

Creator

Dallas R H; Kimmel A; Wilkins M L; Rana S; Garcia A; Cheng Y I; Wang J; Lyon M; Adolescent Palliative Care Consortium

Identifier

10.1542/peds.2016-1854

Publisher

Pediatrics

Date

2016

Subject

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

Description

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.

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

September 2017 List

Notes

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

Citation

Dallas R H; Kimmel A; Wilkins M L; Rana S; Garcia A; Cheng Y I; Wang J; Lyon M; Adolescent Palliative Care Consortium, “Acceptability Of Family-centered Advanced Care Planning For Adolescents With Hiv,” Pediatric Palliative Care Library, accessed October 26, 2021, https://pedpalascnetlibrary.omeka.net/items/show/10694.

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