Patricia E Hershberger1,2, Agatha M Gallo1, Robert Molokie2,3,4, Alexis A Thompson5,6, Marie L Suarez1, Yingwei Yao1, Diana J Wilkie1,4. 1. University of Illinois at Chicago, College of Nursing, Illinois, USA. 2. University of Illinois at Chicago, College of Medicine, Illinois, USA. 3. University of Illinois at Chicago, College of Pharmacy, Illinois, USA. 4. University of Illinois Hospital and Health Sciences System Comprehensive Sickle Cell Center, Chicago, Illinois, USA. 5. Northwestern University-Feinberg School of Medicine, Chicago, Illinois, USA. 6. Division of Hematology/Oncology/Stem Cell Transplantation, Ann and Robert H. Lurie Children's Hospital of Chicago, Illinois, USA.
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 ofparenthood 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.
RCT Entities:
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.
Authors: B Modell; M Darlison; H Birgens; H Cario; P Faustino; P C Giordano; B Gulbis; P Hopmeier; D Lena-Russo; L Romao; E Theodorsson Journal: Scand J Clin Lab Invest Date: 2007 Impact factor: 1.713
Authors: Dalal S Aldossary; Vandy Black; Miriam O Ezenwa; Agatha M Gallo; Versie M Johnson-Mallard; Nyema T Eades; Anne O Oguntoye; Yingwei Yao; Diana J Wilkie Journal: J Genet Couns Date: 2021-11-26 Impact factor: 2.717
Authors: Patricia E Hershberger; Agatha M Gallo; Robert Molokie; Alexis A Thompson; Marie L Suarez; Yingwei Yao; Constance M Dallas; Diana J Wilkie Journal: J Clin Nurs Date: 2016-03-11 Impact factor: 3.036
Authors: Aarushi Gupta; Joseph A Cafazzo; Maarten J IJzerman; Joost F Swart; Sebastiaan Vastert; Nico M Wulffraat; Susanne Benseler; Deborah Marshall; Rae Yeung; Marinka Twilt Journal: J Med Internet Res Date: 2021-12-24 Impact factor: 5.428