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

• Published in: JMIR pediatrics and parenting Vol. 1; no. 2; p. e11058
• Main Authors: Kulandaivelu, Yalinie, Lalloo, Chitra, Ward, Richard, Zempsky, William T, Kirby-Allen, Melanie, Breakey, Vicky R, Odame, Isaac, Campbell, Fiona, Amaria, Khush, Simpson, Ewurabena A, Nguyen, Cynthia, George, Tessy, Stinson, Jennifer N
• Format: Journal Article
• Language: English
• Published: Canada JMIR Publications 25.09.2018
• Subjects: Blood; Chronic illnesses; Emergency medical care; Focus groups; Interviews; Original Paper; Parents & parenting; Pediatrics; Qualitative research; Quality of life; Questionnaires; Sickle cell disease; Teenagers; needs assessment; sickle cell; adolescent; qualitative research; cell phone; transitional care; self-management; internet
• ISSN: 2561-6722; 2561-6722
• DOI: 10.2196/11058

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. 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. 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. 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. 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.