title: Perception of young adults with sickle cell disease or sickle cell trait about participation in the CHOICES randomized controlled trial.
abstract: OBJECTIVE
  To gain an in-depth understanding of the perceptions of young adults with sickle cell disease and sickle cell trait about parenthood and participating in the CHOICES randomized controlled trial that used computer-based, educational programmes.
  
  
  BACKGROUND
  In the USA, there is insufficient education to assure that all young adults with sickle cell disease or sickle cell trait understand genetic inheritance risks and reproductive options to make informed reproductive decisions. To address this educational need, we developed a computer-based, multimedia program (CHOICES) and reformatted usual care into a computer-based (e-Book) program. We then conducted a two-year randomized controlled trial that included a qualitative component that would deepen understanding of young adults' perceptions of parenthood and use of computer-based, educational programmes.
  
  
  METHODS
  A qualitative descriptive approach completed after a randomized controlled trial.
  
  
  METHODS
  Sixty-eight men and women of childbearing age participated in semi-structured interviews at the completion of the randomized controlled trial from 2012-2013. Thematic content analysis guided the qualitative description.
  
  
  RESULTS
  Three main themes were identified: (1) increasing knowledge and new ways of thinking and behaving; (2) rethinking parenting plans; and (3) appraising the program design and delivery. Most participants reported increased knowledge and rethinking of their parenting plans and were supportive of computer-based learning. Some participants expressed difficulty in determining individual transmission risks.
  
  
  CONCLUSIONS
  Participants perceived the computer programs as beneficial to their learning. Future development of an Internet-based educational programme is warranted, with emphasis on providing tailored education or memory boosters about individual transmission risks.
authors.affiliation: University of Illinois at Chicago, College of Nursing, Illinois, USA.|University of Illinois at Chicago, College of Medicine, Illinois, USA.
authors.forename: Patricia E
authors.initials: PE
authors.lastname: Hershberger
authors.affiliation: University of Illinois at Chicago, College of Nursing, Illinois, USA.
authors.forename: Agatha M
authors.initials: AM
authors.lastname: Gallo
authors.affiliation: University of Illinois at Chicago, College of Medicine, Illinois, USA.|University of Illinois at Chicago, College of Pharmacy, Illinois, USA.|University of Illinois Hospital and Health Sciences System Comprehensive Sickle Cell Center, Chicago, Illinois, USA.
authors.forename: Robert
authors.initials: R
authors.lastname: Molokie
authors.affiliation: Northwestern University-Feinberg School of Medicine, Chicago, Illinois, USA.|Division of Hematology/Oncology/Stem Cell Transplantation, Ann and Robert H. Lurie Children's Hospital of Chicago, Illinois, USA.
authors.forename: Alexis A
authors.initials: AA
authors.lastname: Thompson
authors.affiliation: University of Illinois at Chicago, College of Nursing, Illinois, USA.
authors.forename: Marie L
authors.initials: ML
authors.lastname: Suarez
authors.affiliation: University of Illinois at Chicago, College of Nursing, Illinois, USA.
authors.forename: Yingwei
authors.initials: Y
authors.lastname: Yao
authors.affiliation: University of Illinois at Chicago, College of Nursing, Illinois, USA.|University of Illinois Hospital and Health Sciences System Comprehensive Sickle Cell Center, Chicago, Illinois, USA.
authors.forename: Diana J
authors.initials: DJ
authors.lastname: Wilkie
mesh_terms: D000328:Adult; D000755:Anemia, Sickle Cell; D002755:Choice Behavior; D005260:Female; D006801:Humans; D008297:Male; D019212:Multimedia; D010353:Patient Education as Topic; D010465:Perception; D012805:Sickle Cell Trait; D014584:User-Computer Interface; D055815:Young Adult
keywords: Internet research; computerized intervention; genetic education; patient education; qualitative research; randomized control trial respondents; reproductive knowledge; sickle cell disease