@Article{info:doi/10.2196/11058,
author="Kulandaivelu, Yalinie
and Lalloo, Chitra
and Ward, Richard
and Zempsky, William T
and Kirby-Allen, Melanie
and Breakey, Vicky R
and Odame, Isaac
and Campbell, Fiona
and Amaria, Khush
and Simpson, Ewurabena A
and Nguyen, Cynthia
and George, Tessy
and Stinson, Jennifer N",
title="Exploring the Needs of Adolescents With Sickle Cell Disease to Inform a Digital Self-Management and Transitional Care Program: Qualitative Study",
journal="JMIR Pediatr Parent",
year="2018",
month="Sep",
day="25",
volume="1",
number="2",
pages="e11058",
keywords="sickle cell; adolescent; cell phone; self-management; internet; qualitative research; needs assessment; transitional care",
abstract="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. ",
issn="2561-6722",
doi="10.2196/11058",
url="http://pediatrics.jmir.org/2018/2/e11058/",
url="https://doi.org/10.2196/11058",
url="http://www.ncbi.nlm.nih.gov/pubmed/31518307"
}