Perception of young adults with sickle cell disease or sickle cell trait about participation in the CHOICES randomized controlled trial

Patricia E. Hershberger*, Agatha M. Gallo, Robert Molokie, Alexis A Thompson, Marie L. Suarez, Yingwei Yao, Diana J. Wilkie

*Corresponding author for this work

Research output: Contribution to journalArticle

1 Citation (Scopus)

Abstract

Aims: 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. Design: 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/findings: 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. Conclusion: 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.

Original languageEnglish (US)
Pages (from-to)1430-1440
Number of pages11
JournalJournal of Advanced Nursing
Volume72
Issue number6
DOIs
StatePublished - Jun 1 2016

Fingerprint

Sickle Cell Trait
Sickle Cell Anemia
Young Adult
Randomized Controlled Trials
Parenting
Learning
Education
Depth Perception
Multimedia
Internet
Software
Interviews

Keywords

  • Computerized intervention
  • Genetic education
  • Internet research
  • Patient education
  • Qualitative research
  • Randomized control trial respondents
  • Reproductive knowledge
  • Sickle cell disease

ASJC Scopus subject areas

  • Nursing(all)

Cite this

Hershberger, Patricia E. ; Gallo, Agatha M. ; Molokie, Robert ; Thompson, Alexis A ; Suarez, Marie L. ; Yao, Yingwei ; Wilkie, Diana J. / Perception of young adults with sickle cell disease or sickle cell trait about participation in the CHOICES randomized controlled trial. In: Journal of Advanced Nursing. 2016 ; Vol. 72, No. 6. pp. 1430-1440.
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Perception of young adults with sickle cell disease or sickle cell trait about participation in the CHOICES randomized controlled trial. / Hershberger, Patricia E.; Gallo, Agatha M.; Molokie, Robert; Thompson, Alexis A; Suarez, Marie L.; Yao, Yingwei; Wilkie, Diana J.

In: Journal of Advanced Nursing, Vol. 72, No. 6, 01.06.2016, p. 1430-1440.

Research output: Contribution to journalArticle

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AU - Hershberger, Patricia E.

AU - Gallo, Agatha M.

AU - Molokie, Robert

AU - Thompson, Alexis A

AU - Suarez, Marie L.

AU - Yao, Yingwei

AU - Wilkie, Diana J.

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