Background To date data about ACP with adolescents have been from small pilot studies.
Aim To test the feasibility, acceptance, satisfaction and adverse events from a longitudinal study of an ACP intervention in a large, 5-site trial among adolescents with HIV and their families.
Methods A two-arm, randomised, controlled, blinded trial enrolled 216 participants from five hospital-based clinics between July 2011–June 2014. Dyads (N = 108) were randomised on a 1:1 ratio to either the FACE intervention (Lyon Advance Care Planning Survey, Respecting Choices Interview, Advance Directive Completion) or Healthy Living Control (Developmental History, Nutrition, Safety Tips). Three, weekly, 60–90 min sessions were conducted. Outcome measures: Satisfaction Questionnaire, pre-determined benchmarks, and operational definition of adverse event.
Results Adolescents’ mean age was 17.9 years (range 14–20); 54% male; 92% Black. We achieved all benchmarks: 53% of eligible families enrolled and 99% attended all 3 sessions. Retention was 86% for 3 month follow-ups and 72% for 18-month follow-ups to date. Satisfaction ratings overall were: 92% useful; 92% helpful; 88% worthwhile; 84% satisfied; 56% felt courageous; 5.8% hurtful; 5.1% scared; 4.7% too much to handle. No adverse events were reported.
Discussion Adolescents with HIV/AIDS and their families were willing and able to participate in ACP across study sites, indicating generalizability and confirming pilot study results. They committed to a two-year study requiring 8 study visits. Attrition was less than the 30% estimated.
Conclusion ACP conducted by trained facilitators in highly structured program with adolescents is feasible and acceptable with no adverse events.
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