BackgroundACP with a facilitator is acceptable with HIV+ adolescents, but the influence of facilitator on participant satisfaction with FACE has not been studied.AimExamine the relationship between quality of facilitator’s communication and participant satisfaction ratings.MethodsA total of 48 dyads (HIV+ adolescents and their families), randomly assigned into the FACE intervention in a two-arm RCT, were used for this analysis. Participants completed two questionnaires after each of the three FACE sessions: 13-item Satisfaction Questionnaire (Lyon); 5-item Quality of Participant-Interviewer Communication Scale (QC, Curtis). Higher mean scores indicate higher session satisfaction.ResultsTeens were 54% male; 91% African-American; mean age 18 years (range 14–21). Examined by session, correlation between satisfaction and QC scores varied: for adolescents, correlations were: Session 1 (r = 0.40, p = 0.0050); Session 2 (r = 0.27, p = 0.0659); Session 3 (r = 0.40, p = 0.0050). The corresponding figures for families were: Session 1 (0.39, p = 0.0062); Session 2 (r = 0.34, p = 0.0190); Session 3 (r = 0.48, p = 0.0007). Examined by session, means of seven satisfaction items (range 1–35): for teens, Session 1 (27.1); Session 2 (29.1); Session 3 (29.4). The corresponding figures for families were: Session 1 (29.4); Session 2 (30.8); Session 3 (31.2).DiscussionAdolescents and families agreed that participating in the FACE intervention was satisfactory. The ratings of study satisfaction were significantly correlated with the QC among both adolescents and families, with the exception of session 2 with the adolescents.ConclusionAssessing satisfaction with a family-centred intervention should include quality of participant-facilitator communication, as this may be an important variable predicting satisfaction, independent of intervention effects.

BackgroundAdvance care planning (ACP) should begin from the time of diagnosis.AimTo survey the self-reported needs of adults living with HIV/AIDS for end-of-life care.MethodsA 2-arm, randomised, controlled trial of ACP is being conducted in Washington, DC with adults with HIV/AIDS aged ≥21 years and their surrogates beginning October 2013. N = 111 patient/family dyads. Patients were mean age 51 (range 22–74 years), 54% male, 96% African-American and 42% impoverished. Before randomization, participants completed Lyon Advance Care Planning Survey-Patient and Surrogate Versions, 31-items on a 5-point Likert-scale. Prevalence-adjusted bias-adjusted Kappas (PABAK) were calculated.ResultsAt baseline, there was almost perfect agreement (PABAK 0.81–0.99) about the importance of: Understanding treatment choices (98%); being physically comfortable (94%); Being able to complete an advance directive (91%). Slight agreement (Kappa = 0.16) for Being off machines that extend life (49%); fair agreement (Kappa = 0.52) on dying a natural death. Patients preferred to discuss ACP while healthy, 67%. Agreement about best time to “bring up end of life” was slight, to less than chance (30% before getting sick; 1% when first diagnosed; 0% when first sick, first hospitalised, if dying).DiscussionImportant areas of agreement existed without an ACP intervention. However, only slight agreement existed for withdrawing treatment and when to initiate ACP conversations.ConclusionPoor, minority, HIV positive patients are willing to engage in advance care planning with surrogates. Routine, standardised interventions may provide the optimal setting for facilitating conversations about dying a natural death or being on machines that extend life.

BackgroundFew studies have tested whether ACP can sustain congruence in treatment preferences over time.AimTo test the efficacy of an ACP intervention to sustain congruence in treatment preferences at 3-month post-intervention among adolescents with HIV and their families.MethodsA two-arm, randomised, controlled trial was conducted in five hospital-based clinics from July 2011–June 2014. Dyads (N = 91) were randomised to either the FACE intervention (Lyon Advance Care Planning Survey, Respecting Choices Interview, Advance Directive Completion) or Control (Developmental History, Nutrition, Safety Tips). Three, weekly, 60 min sessions were conducted. Outcome measure was Statement of Treatment Preferences.ResultsAdolescents’ mean age was 17.9 years (range 14–20); 54% male; 92% Black. Immediately following the intervention, FACE dyads had significantly higher congruence in treatment preferences than controls (Situation 1- kappa 0.63 vs. –0.17 p < 0.000; Situation 2- kappa 0.59 vs. –0.07 p = 0.0002; Situation 3- kappa 0.76 vs. 0.16 p = 0.0003). At 3-month post-intervention, FACE group had significantly higher kappa for Situation 2 compared to controls (0.55 vs. 0.13, p = 0.0118). Agreement to discontinue treatment was always higher among FACE dyads than controls immediately following the intervention (Situation 1–15% vs. 0%; Situation 2–13% vs. 4%; Situation 3–24% vs. 4%) and at 3-month post-intervention (Situation 1–11% vs. 0%; Situation 2–23% vs. 6%; Situation 3–17% vs. 6%).DiscussionCongruence in treatment preferences was consistently higher for intervention dyads compared with controls. However, congruence among intervention dyads diminished over time, indicating a short-term intervention effect.ConclusionBooster sessions may be needed to sustain congruence over time.