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.

Keywords: HIV/AIDS; adolescents; advance care planning; communication; decision-making; family intervention.

Figure 1

Transactonal model of coping with stress. Notes: Proximal program mediators are shown in shaded areas. Plans and Actions = statement of treatment preferences and completion of Five Wishes^© advance directive. Psychological Adjustment = Symptoms of depressed or anxious mood as measured by the Beck Depression Inventory II or the Beck Anxiety Inventory. Quality of Life = Total, School, Emotion, Physical and Social quality of life as measured by PedsQL™; HIV Specific Symptoms as measured by the General Health Assessment for Children. Abbreviations: A, adolescent; F, family; FACE, Family Centered Advance Care.

Figure 2

Flow of participants through each stage of the trial. Notes: *Kept in analysis, per intent-to-treat design, as if received allocated condition; **n = 1 randomized intervention adolescent became psychotic & ineligible before Session 1; ***n = 1 randomized adolescent control was shot & withdrew from study before Session 1.