title: Youth with Sickle Cell Disease: Genetic and Sexual Health Education Needs.
abstract: OBJECTIVE
  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.
authors.affiliation: Washington University School of Medicine, Division of Public Health Sciences, Department of Surgery, St. Louis, MO, USA.
authors.forename: Ashley J
authors.initials: AJ
authors.lastname: Housten
authors.affiliation: Washington University School of Medicine, Program in Occupational Therapy, St. Louis, MO, USA.
authors.forename: Regina A
authors.initials: RA
authors.lastname: Abel
authors.affiliation: Washington University School of Medicine, Program in Occupational Therapy, St. Louis, MO, USA.
authors.forename: Joyce
authors.initials: J
authors.lastname: Dadekian
authors.affiliation: Washington University School of Medicine, Program in Occupational Therapy, St. Louis, MO, USA.
authors.forename: Kelly
authors.initials: K
authors.lastname: Schwieterman
authors.affiliation: Washington University School of Medicine, Program in Occupational Therapy, St. Louis, MO, USA.
authors.forename: Dawn
authors.initials: D
authors.lastname: Jason
authors.affiliation: Washington University School of Medicine, Program in Occupational Therapy, St. Louis, MO, USA. king_a@wustl.edu.
authors.forename: Allison A
authors.initials: AA
authors.lastname: King
mesh_terms: D000293:Adolescent; D000755:Anemia, Sickle Cell / Q000235:genetics*; D005260:Female; D005817:Genetic Counseling; D006266:Health Education; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D020380:Needs Assessment; D060728:Reproductive Health / Q000193:education*; D012309:Risk-Taking; D055815:Young Adult