title: Acceptability of Family-Centered Advanced Care Planning for Adolescents With HIV.
abstract: 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.
  
  
  
  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.
  
  
  
  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 (β = 1.16, P = .02). There were no adverse events.
  
  
  
  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.
authors.affiliation: Department of Infectious Diseases, St Jude Children's Research Hospital, Memphis, Tennessee; ronald.dallas@stjude.org.
authors.forename: Ronald H
authors.initials: RH
authors.lastname: Dallas
authors.affiliation: Division of Adolescent and Young Adult Medicine, Center for Translational Science/Children's Research Institute, Children's National, Washington, District of Columbia.
authors.forename: Allison
authors.initials: A
authors.lastname: Kimmel
authors.affiliation: Department of Infectious Diseases, St Jude Children's Research Hospital, Memphis, Tennessee.
authors.forename: Megan L
authors.initials: ML
authors.lastname: Wilkins
authors.affiliation: Howard University College of Medicine, Washington, District of Columbia.
authors.forename: Sohail
authors.initials: S
authors.lastname: Rana
authors.affiliation: The University of Miami Miller School of Medicine, Miami, Florida; and.
authors.forename: Ana
authors.initials: A
authors.lastname: Garcia
authors.affiliation: Division of Adolescent and Young Adult Medicine, Center for Translational Science/Children's Research Institute, Children's National, Washington, District of Columbia.
authors.forename: Yao I
authors.initials: YI
authors.lastname: Cheng
authors.affiliation: Division of Adolescent and Young Adult Medicine, Center for Translational Science/Children's Research Institute, Children's National, Washington, District of Columbia.|The George Washington University School of Medicine and Health Sciences, Washington, District of Columbia.
authors.forename: Jichuan
authors.initials: J
authors.lastname: Wang
authors.affiliation: Division of Adolescent and Young Adult Medicine, Center for Translational Science/Children's Research Institute, Children's National, Washington, District of Columbia.|The George Washington University School of Medicine and Health Sciences, Washington, District of Columbia.
authors.forename: Maureen E
authors.initials: ME
authors.lastname: Lyon
mesh_terms: D000293:Adolescent; D016497:Adolescent Health Services / Q000706:statistics & numerical data*; D032722:Advance Care Planning; D005190:Family / Q000523:psychology*; D022143:Family Nursing; D005260:Female; D015658:HIV Infections / Q000523:psychology / Q000628:therapy*; D006801:Humans; D008297:Male; D010342:Patient Acceptance of Health Care / Q000706:statistics & numerical data*; D011446:Prospective Studies; D011795:Surveys and Questionnaires; D014481:United States; D055815:Young Adult