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Perception of young adults with sickle cell disease or sickle cell trait about participation in the CHOICES randomized controlled trial
Author(s) -
Hershberger Patricia E.,
Gallo Agatha M.,
Molokie Robert,
Thompson Alexis A.,
Suarez Marie L.,
Yao Yingwei,
Wilkie Diana J.
Publication year - 2016
Publication title -
journal of advanced nursing
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.948
H-Index - 155
eISSN - 1365-2648
pISSN - 0309-2402
DOI - 10.1111/jan.12702
Subject(s) - randomized controlled trial , thematic analysis , perception , qualitative research , medicine , young adult , developmental psychology , disease , psychology , clinical psychology , gerontology , social science , surgery , pathology , neuroscience , sociology
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.