Caregiver communication and psychosocial outcomes among adolescents and young adults with sickle cell disease

OBJECTIVE: The transition from pediatric to adult medical care is associated with increased symptoms of anxiety, depression, and experiences with disease stigma for adolescents and young adults (AYA) with sickle cell disease (SCD). Community-informed conceptual frameworks suggest that caregiver communication could play an important role in enhancing AYA well-being during this critical period; yet this association has yet to be empirically investigated in this population. This study examined the influence of caregiver-AYA communication on psychosocial outcomes among AYA with SCD. METHODS: AYA with SCD ages 16-25 were enrolled in a prospective, 3-month study. Participants completed baseline (T1) and follow-up surveys 3 months later (T2). Measures included the Parent-Adolescent Communication Scale, PROMIS Anxiety and Depression short forms, Measure of Sickle Cell Stigma, and Sickle Cell Self-Efficacy Scale. Cross-sectional and prospective bivariate and multivariate associations were investigated. RESULTS: Bivariate correlations showed that open caregiver-AYA communication at T1 was cross-sectionally associated with lower anxiety (r = -.35, p = .016), and prospectively associated with lower anxiety (r = -.31, p = .047), depression (r = -.31, p = .045), total stigma (r = -.36, p = .016) expected discrimination stigma (r = -.30, p = .048), and internalized stigma (r = .40, p = .008). Communication at T1 remained negatively associated with total stigma (β = -.21, p = -.038), internalized stigma (β = -.24, p = .044) and expected discrimination stigma (β = -.28, p = .030) at T2 when controlling for age, gender, and baseline psychosocial factors. CONCLUSION: AYA who reported open caregiver communication at baseline reported significantly fewer symptoms of anxiety, depression, and stigma 3 months later. Thus, improving caregiver-AYA communication may improve AYA psychosocial functioning, which could lead to improved SCD-related care and transition.