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

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 educat...

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Publicado en:Journal of Advanced Nursing (John Wiley & Sons, Inc.) Vol. 72; no. 6; pp. 1430 - 1441
Autores principales: Hershberger, Patricia E., Gallo, Agatha M., Molokie, Robert, Thompson, Alexis A., Suarez, Marie L., Yao, Yingwei, Wilkie, Diana J.
Formato: research tables/charts Journal Article
Publicado: John Wiley & Sons, Inc. Jun2016
Acceso en línea:Ver este registro en EBSCOhost
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      dt: Jun2016
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      pub: John Wiley & Sons, Inc.
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        atl: Perception of young adults with sickle cell disease or sickle cell trait about participation in the CHOICES randomized controlled trial.
      aug:
        au:
          Hershberger, Patricia E.
          Gallo, Agatha M.
          Molokie, Robert
          Thompson, Alexis A.
          Suarez, Marie L.
          Yao, Yingwei
          Wilkie, Diana J.
        affil: University of Illinois at Chicago, College of Nursing, Illinois, USA
      sug:
        subj:
          Anemia, Sickle Cell Familial and Genetic
          Reproductive Health Education
          Parenthood
          Health Knowledge
          Health Education
          Computer-Assisted Instruction
          Human
          Funding Source
          Sickle Cell Trait
          Randomized Controlled Trials
          Qualitative Studies
          Descriptive Research
          Semi-Structured Interview
          Thematic Analysis
          Content Analysis
          Multimedia
          Pretest-Posttest Design
          Questionnaires
          Interviews
          Interview Guides
          Male
          Female
          Adult
          Socioeconomic Factors
          Anemia, Sickle Cell Transmission
          Parenting
          Information Seeking Behavior
          Information Resources
          Internet
          Adult: 19-44 years
          Male
          Female
      ab: 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.
      pubtype: Academic Journal
      doctype:
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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