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

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 \u3c 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

Spiritual well-being among HIV-infected adolescents and their families.

Congruence in spirituality between HIV+ adolescent (n=40)/family (n=40) dyads and psychological adjustment and quality of life were assessed, using the Spiritual Well-Being Scale of the Functional Assessment of Chronic Illness Therapy, Beck Depression Inventory-II, Beck Anxiety Inventory and Pediatric Quality of Life Inventory at baseline and 3-month post-intervention. Adolescents were 60% female and 92% African-American. Congruence in spirituality between adolescent/surrogate dyads remained unchanged at 3-months. High congruence existed for “having a reason for living”; rejection of “life lacks meaning/purpose” and “HIV is a punishment from God.” Adolescents were less likely to forgive the harm others caused them, than their families

What Do Adults With HIV Want? End-of-Life Care Goals, Values and Beliefs by Gender, Race, Sexual Orientation.

© The Author(s) 2021. Objective: We examined factors influencing end-of-life care preferences among persons living with HIV (PLWH). Methods: 223 PLWH were enrolled from 5 hospital-based clinics in Washington, DC. They completed an end-of-life care survey at baseline of the FACE™-HIV Advance Care Planning clinical trial. Findings: The average age of patients was 51 years. 56% were male, 66% heterosexual, and 86% African American. Two distinct groups of patients were identified with respect to end-of-life care preferences: (1) a Relational class (75%) who prioritized family and friends, comfort from church services, and comfort from persons at the end-of-life; and (2) a Transactional/Self-Determination class (25%) who prioritized honest answers from their doctors, and advance care plans over relationships. African Americans had 3x the odds of being in the Relational class versus the Transactional/Self-determination class, Odds ratio = 3.30 (95% CI, 1.09, 10.03), p = 0.035. Males were significantly less likely to be in the relational latent class, Odds ratio = 0.38 (CI, 0.15, 0.98), p = 0.045. Compared to non-African-Americans, African-American PLWH rated the following as important: only taking pain medicines when pain is severe, p = 0.0113; saving larger doses for worse pain, p = 0.0067; and dying in the hospital, p = 0.0285. PLWH who were sexual minorities were more afraid of dying alone, p = 0.0397, and less likely to only take pain medicines when pain is severe, p = 0.0091. Conclusion: Integrating culturally-sensitive palliative care services as a component of the HIV care continuum may improve health equity and person-centered care

The Effect of FAmily-CEntered (FACE®) Pediatric Advanced Care Planning Intervention on Family Anxiety: A Randomized Controlled Clinical Trial for Adolescents With HIV and Their Families

Clinicians fear pediatric advance care planning (pACP) for adolescents is too distressing for families. Multisite longitudinal randomized controlled trial of adolescents with HIV tested the effect of FAmily-CEntered (FACE(®)) pACP intervention on families’ anxiety and depression. One hundred five adolescent/family dyads were randomized to FACE(®) (n = 54 dyads) or control (n = 51 dyads). Families were 90% African American, 37% HIV-positive, and 22% less than high school educated. Families reported lower anxiety 3 months post-FACE(®) intervention than control (β = −4.71, 95% confidence interval [CI] = [−8.20, −1.23], p = .008). Male family members were less anxious than female family members (β = −4.55, 95% CI = [−6.96, −2.138], p ≤ .001). Family members living with HIV reported greater depressive symptoms than HIV-uninfected families (β = 3.32, 95% CI = [0.254, 6.38], p = .034). Clinicians can be assured this structured, facilitated FACE(®) pACP model minimized family anxiety without increasing depressive symptoms. Adolescent/family dyads should be invited to have access to, and provision of, evidence-based pACP as part of patient-centered/family-supported care in the HIV continuum of care

The influence of religious beliefs and practices on health care decision-making among HIV positive adolescents.

It is unknown if religiousness/spirituality influences end-of-life treatment preferences among adolescents. Investigators assessed whether religiousness/spirituality moderates the relationship between an advance care planning intervention and end-of-life treatment preferences among 85 primarily African-American adolescents living with HIV/AIDS in outpatient-hospital-based HIV-specialty clinics in the United States. Adolescents aged 14–21 years living with HIV/AIDS and their families were randomized to three-weekly-60-minute sessions either: advance care planning (survey, goals of care conversation, advance directive); or control (developmental history, safety tips, nutrition/exercise). At 3-months post-intervention the intervention effect (decreasing the likelihood of choosing to continue treatments in all situations) was significantly moderated by religiousness/spirituality. Highly religious/spiritual adolescents were four times more likely to choose to continue treatments in all situations. Thus, intensive treatments at end-of-life may represent health equity, rather than health disparity. The belief believed that HIV is a punishment from God at baseline (15%, 14/94) was not associated with end-of-life treatment preferences. Twelve percent (11/94) reported they had stopped taking HIV medications for more than 3 days because of the belief in a miracle. Religiousness moderates adolescent’s medical decision-making. Adolescents who believe in miracles should receive chaplaincy referrals to help maintain medication adherence