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Exploring the Needs of Adolescents With Sickle Cell Disease to Inform a Digital Self-Management and Transitional Care Program: Qualitative Study.

Yalinie KulandaiveluChitra LallooRichard WardWilliam T ZempskyMelanie Ann Kirby-AllenVicky R BreakeyIsaac OdameFiona CampbellKhush AmariaEwurabena A SimpsonCynthia NguyenTessy GeorgeJennifer Nan Stinson
Published in: JMIR pediatrics and parenting (2018)
Adolescents, parents, and health care providers described the continued challenges youth with sickle cell disease face in terms of psychosocial impacts and stigmatization. Participants perceived a benefit to alleviating some of these challenges through a digital self-management tool. They recommended that an effective digital self-management program should provide appropriate sickle cell disease-related education; guidance on developing self-advocacy and communication skills; empower adolescents with information for planning for their future; provide options for social support; and be designed to be engaging for both adolescents and parents to use. A digital platform to deliver these elements is an accessible and acceptable way to address the self-management and transitional care needs of adolescents.
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