Is it safe? talking to teens with HIV/AIDS about death and dying: A 3-month evaluation of family centered advance care (face) planning-anxiety, depression, quality of life

Abstract

Purpose: To determine the safety of engaging HIV-positive (HIV+) adolescents in a Family Centered Advance Care (FACE) planning intervention. Patients and methods: We conducted a 2-armed, randomized controlled clinical trial in 2 hospital-based outpatient clinics from 2006-2008 with HIV+ adolescents and their surrogates (n = 76). Three 60-90 minutes sessions were conducted weekly. FACE intervention groups received: Lyon FCACP Survey©, the Respecting Choices® interview, and completion of The Five Wishes©. The Healthy Living Control (HLC) received: Developmental History, Healthy Tips, Future Planning (vocational, school or vocational rehabilitation). Three-month post-intervention outcomes were: completion of advance directive (Five Wishes©); psychological adjustment (Beck Depression, Anxiety Inventories); quality of life (PedsQL™); and HIV symptoms (General Health Self-Assessment). Results: Adolescents had a mean age, 16 years; 40% male; 92% African-American; 68% with perinatally acquired HIV, 29% had AIDS diagnosis. FACE participants completed advance directives more than controls, using time matched comparison (P < 0.001). Neither anxiety, nor depression, increased at clinically or statistically significant levels post-intervention. FACE adolescents maintained quality of life. FACE families perceived their adolescents as worsening in their school (P = 0.018) and emotional (P = 0.029) quality of life at 3 months, compared with controls. Conclusions: Participating in advance care planning did not unduly distress HIV+ adolescents. © 2010 Lyon et al, publisher and licensee Dove Medical Press Ltd.