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Acceptability of Family-Centered Advanced Care Planning for Adolescents With HIV.


ABSTRACT: 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 (? = 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.

SUBMITTER: Dallas RH 

PROVIDER: S-EPMC5127070 | biostudies-literature | 2016 Dec

REPOSITORIES: biostudies-literature

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Acceptability of Family-Centered Advanced Care Planning for Adolescents With HIV.

Dallas Ronald H RH   Kimmel Allison A   Wilkins Megan L ML   Rana Sohail S   Garcia Ana A   Cheng Yao I YI   Wang Jichuan J   Lyon Maureen E ME  

Pediatrics 20161101 6


<h4>Background and objective</h4>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.<h4>Methods</h4>We conducted a prospective 2-arm randomized controlled trial at 6 US urban hospitals. Adolescent/family member dyads were randomized to receive the 1-se  ...[more]

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