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

Ashley J. Housten, Regina A. Abel, Joyce Dadekian, Kelly Schwieterman, Dawn Jason, Allison A. King

Research output: Contribution to journalArticlepeer-review

5 Scopus citations


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.

Original languageEnglish
Pages (from-to)856-865
Number of pages10
JournalAmerican Journal of Health Behavior
Issue number6
StatePublished - Nov 1 2015


  • Adolescent
  • African Americans
  • Health education
  • Sickle cell disease
  • Sickle cell trait


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