Youth with sickle cell disease: Genetic and sexual health education needs

Objectives: Assess the need for and interest in a sexual health and sickle cell disease (SCD) inheritance educational program for youth with SCD. Methods: Using a cross-sectional approach, qualitative data were collected during interviews of youth with SCD between ages 11-19 years from an urban hospital. Inductive and emergent coding was used to identify themes. Frequencies were recorded and analyzed. Results: Thirty-five youth patients were approached; 20 (57%) consented and completed interviews. Half of the participants were adolescent girls. The mean age was 16.9±1.8 years (range 13-19). Of the 20 participants, 100% expressed interest in SCD genetic counseling and/or posed questions regarding SCD inheritance. Nineteen (95%) demonstrated deficits in sexual health knowledge and/or requested sexual health education. Seventeen (85%) actively engaged with educational materials. Twelve (60%) reported engaging in sexual activity, 7 (35%) in risky behaviors, and 3 (15%) reported past sexually transmitted infection (STI) diagnosis. Conclusions: Youth with SCD demonstrated limited knowledge regarding sexual health and inheritance of SCD. Topics like information-seeking, limited knowledge, and need for social skills training provide evidence for the creation of an educational intervention for this vulnerable population. This program shows initial feasibility for youth with SCD.