Background: Youth with sickle cell disease (SCD) do not receive adequate, coordinated SCD genetic inheritance and sexual health education. As more individuals with SCD live into childbearing years, appropriate education should be provided. To assess interest in an educational program about the inheritance of SCD and sexual health, we conducted a single center pilot study among youth with SCD. Secondarily, we studied the feasibility of implementing an education program. We hypothesized that knowledge about SCD inheritance, sexual health, and risk-reduction strategies would increase.
Methods: We used a mixed methods approach. Patients aged 11-19 years were approached in an urban hospital. Semi-structured interviews were conducted, recorded and transcribed. Qualitative data were analyzed and coded to identify themes. A social skills-based SCD inheritance and sexual health education program based on these findings and the Sisters Informing Sisters About Topics on AIDS (SISTA) reinvention framework was assessed using member-check. The program was then piloted for feasibility using the measures: participant acceptance of educational intervention, demand and attendance, and limited efficacy in knowledge gain. Feasibility was defined as 50% of individuals consenting to participate.
Results: All participants from the qualitative analysis demonstrated knowledge deficits and/or interest in SCD genetic education. Nineteen (95%) demonstrated deficits in sexual health knowledge and/or requested education. Seventeen (85%) demonstrated knowledge gain in SCD inheritance and/or sexual health. Twelve (60%) reported engaging in sexual activity, seven (35%) in risky behaviors, and three (15%) reported past STI diagnosis. Twenty (57%) consented to participate. An educational program and pre/posttest measures were created and assessed using member-check.
Conclusions: Youth with SCD lack an understanding of both the genetics of their disease and sexual health. With the feasibility of the qualitative analysis supported, the next phase of research will address the efficacy of implementing a genetic and sexual health education program.