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.
AbstractIntroductionMedical challenges, including perinatally acquired HIV (PHIV), can be considered adversity with the potential to compromise individuals' ability to meet societal expectations across the lifespan. Studies suggest that resilience, defined as positive adaptation in the context of adversity, helps individuals overcome challenges and improve their quality of life. Few longitudinal studies have examined resilience in young adults with perinatally acquired HIV (YAPHIV) or perinatal HIV exposure, uninfected (YAPHEU). We examined three young adult milestones, which can affect the life‐long quality of life, as markers of resilience: high school graduation, postsecondary education and current employment.MethodsAnalyses included YAPHIV and YAPHEU, ages 19–27 years, followed in longitudinal cohort studies: Pediatric HIV/AIDS Cohort Study Adolescent Master Protocol (AMP) (7–17 years) and AMP Up (≥18 years). Factors known to influence the attainment of milestones (outcomes) were examined: executive function, cognitive efficiency (working memory and processing speed), behavioural/social‐emotional functioning, parent/caregiver mental/physical health and cumulative risk. HIV disease markers for YAPHIV were examined. The most recent AMP assessment was used for each factor; outcomes were measured at AMP Up 1‐year follow‐up. Separate robust Poisson regression models were used to assess associations of each factor with each outcome; PHIV status was explored as an effect modifier of each association.ResultsParticipants (N = 315; YAPHIV = 228): 58% female, 67% Black and 27% Hispanic. Compared to YAPHEU, YAPHIV were older and from families with higher median income and fewer symptoms of parent/caregiver mental health/substance use disorders. Proportions of YAPHIV and YAPHEU, respectively, who achieved each milestone were comparable: 82% versus 78% for high school graduation (p = 0.49), 45% versus 51% for postsecondary education (p = 0.35) and 48% versus 54% for current employment (p = 0.32). Higher cognitive efficiency was positively associated with postsecondary education and current employment. Higher executive function, age‐appropriate behavioural/social‐emotional functioning and lower cumulative risk were associated with academic milestones. Among YAPHIV, positive associations were: higher current CD4 with postsecondary education and lower nadir CD4 with current employment. PHIV status did not modify any association.ConclusionsYAPHIV and YAPHEU demonstrated resilience, attaining at least one young adult milestone. Cognitive, behavioural and social resources to support resilience in childhood and adolescence may provide the foundation for continued achievement throughout adulthood.
