%0 Journal Article %@ 2561-6722 %I JMIR Publications %V 1 %N 2 %P e11058 %T Exploring the Needs of Adolescents With Sickle Cell Disease to Inform a Digital Self-Management and Transitional Care Program: Qualitative Study %A Kulandaivelu,Yalinie %A Lalloo,Chitra %A Ward,Richard %A Zempsky,William T %A Kirby-Allen,Melanie %A Breakey,Vicky R %A Odame,Isaac %A Campbell,Fiona %A Amaria,Khush %A Simpson,Ewurabena A %A Nguyen,Cynthia %A George,Tessy %A Stinson,Jennifer N %+ Department of Child Health Evaluative Sciences, The Hospital for Sick Children, 686 Bay Street, Toronto, ON, M5G1X8, Canada, 1 416 813 7654 ext 327105, yalinie.kulandaivelu@sickkids.ca %K sickle cell %K adolescent %K cell phone %K self-management %K internet %K qualitative research %K needs assessment %K transitional care %D 2018 %7 25.9.2018 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Accessible self-management interventions are critical for adolescents with sickle cell disease to better cope with their disease, improve health outcomes and health-related quality of life, and promote successful transition to adult health care services. However, very few comprehensive self-management and transitional care programs have been developed and tested in this population. Internet and mobile phone technologies can improve accessibility and acceptability of interventions to promote disease self-management in adolescents with sickle cell disease. Objective: The aim of this study was to qualitatively explore the following from the perspectives of adolescents, parents, and their health care providers: (1) the impact of sickle cell disease on adolescents to identify challenges to their self-management and transitional care and (2) determine the essential components of a digital self-management and transitional care program as the first phase to inform its development. Methods: A qualitative descriptive design utilizing audio-recorded, semistructured interviews was used. Adolescents (n=19, aged 12-19 years) and parents (n=2) participated in individual interviews, and health care providers (n=17) participated in focus group discussions and were recruited from an urban tertiary care pediatric hospital. Audio-recorded data were transcribed verbatim and organized into categories inductively, reflecting emerging themes using simple content analysis. Results: Data were categorized into 4 major themes: (1) impact of sickle cell disease, (2) experiences and challenges of self-management, (3) recommendations for self-management and transitional care, and (4) perceptions about a digital self-management program. Themes included subcategories and the perspectives of adolescents, parents, and health care providers. Adolescents discussed more issues related to self-management, whereas health care providers and parents discussed issues related to transition to adult health services. Conclusions: 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. %M 31518307 %R 10.2196/11058 %U http://pediatrics.jmir.org/2018/2/e11058/ %U https://doi.org/10.2196/11058 %U http://www.ncbi.nlm.nih.gov/pubmed/31518307