title: Toward understanding family-related characteristics of young adults with sickle-cell disease or sickle-cell trait in the USA.
abstract: OBJECTIVE
  To describe the family-related characteristics of young adults with sickle-cell disease or sickle-cell trait prior to taking part in a randomised controlled trial on sickle-cell reproductive health education.
  
  
  BACKGROUND
  There is a critical need for educational programmes that target the reproductive needs of young adults with sickle-cell disease or trait. However, little is known about the family-related characteristics (i.e., demographic attributes and reproductive health behaviours) in which these young adults live.
  
  
  METHODS
  A descriptive cross-sectional analysis.
  
  
  METHODS
  At study enrolment, 234 young adults (mean age = 25·9 years, 65% female) completed the SCKnowIQ questionnaire. Descriptive statistics depict the demographic attributes and reproductive health behaviours of young adults with sickle-cell disease (n = 138) or trait (n = 96). For group comparisons, independent t tests or Fisher's tests were used, as appropriate.
  
  
  RESULTS
  Young adults with sickle-cell trait had significantly higher education, income and health insurance than those with sickle-cell disease. Both groups believed that sickle-cell disease was a severe condition. A majority of young adults with sickle-cell disease (65%) had no children compared to 42% of those with sickle-cell trait. Most young adults (85% sickle-cell disease, 82% sickle-cell trait) were not planning a pregnancy in the next six months, and many used condoms, withdrawal or oral contraceptives.
  
  
  CONCLUSIONS
  Socioeconomic disparities exist between young adults with sickle-cell disease and sickle-cell trait. Future research that advances education about how and when to communicate appropriate genetic risk information to partners and children especially for young adults with sickle-cell trait would be beneficial.
  
  
  CONCLUSIONS
  Awareness of the similarities and differences in the family-related characteristics among young adults with sickle-cell disease or trait can allow for more tailored reproductive education.
authors.affiliation: College of Nursing, University of Illinois at Chicago, Chicago, IL, USA.|College of Medicine, University of Illinois at Chicago, Chicago, IL, USA.
authors.forename: Patricia E
authors.initials: PE
authors.lastname: Hershberger
authors.affiliation: College of Nursing, University of Illinois at Chicago, Chicago, IL, USA.
authors.forename: Agatha M
authors.initials: AM
authors.lastname: Gallo
authors.affiliation: College of Medicine, University of Illinois at Chicago, Chicago, IL, USA.|College of Pharmacy, University of Illinois at Chicago, Chicago, IL, USA.|Jesse Brown VA Medical Center, Chicago, IL, USA.
authors.forename: Robert
authors.initials: R
authors.lastname: Molokie
authors.affiliation: Feinberg School of Medicine, Northwestern University, Chicago, IL, USA.
authors.forename: Alexis A
authors.initials: AA
authors.lastname: Thompson
authors.affiliation: College of Nursing, University of Illinois at Chicago, Chicago, IL, USA.
authors.forename: Marie L
authors.initials: ML
authors.lastname: Suarez
authors.affiliation: College of Nursing, University of Florida, Gainesville, FL, USA.
authors.forename: Yingwei
authors.initials: Y
authors.lastname: Yao
authors.affiliation: College of Nursing, University of Illinois at Chicago, Chicago, IL, USA.
authors.forename: Constance M
authors.initials: CM
authors.lastname: Dallas
authors.affiliation: College of Nursing, University of Florida, Gainesville, FL, USA.|Prairieview Trust, College of Nursing, University of Florida, Gainesville, FL, USA.|Center of Excellence in Palliative Care Research, College of Nursing, University of Florida, Gainesville, FL, USA.
authors.forename: Diana J
authors.initials: DJ
authors.lastname: Wilkie
mesh_terms: D000328:Adult; D000755:Anemia, Sickle Cell / Q000523:psychology*; D003430:Cross-Sectional Studies; D005191:Family Characteristics; D005260:Female; D006266:Health Education / Q000379:methods; D006801:Humans; D008297:Male; D060728:Reproductive Health / Q000706:statistics & numerical data*; D012805:Sickle Cell Trait / Q000523:psychology*; D011795:Surveys and Questionnaires; D014481:United States; D055815:Young Adult
keywords: family characteristics; family planning education; family research; genetic counselling; reproductive health behaviours; sickle-cell disorders