TY  - JOUR
AU  - Kulandaivelu, Yalinie
AU  - Lalloo, Chitra
AU  - Ward, Richard
AU  - Zempsky, William T
AU  - Kirby-Allen, Melanie
AU  - Breakey, Vicky R
AU  - Odame, Isaac
AU  - Campbell, Fiona
AU  - Amaria, Khush
AU  - Simpson, Ewurabena A
AU  - Nguyen, Cynthia
AU  - George, Tessy
AU  - Stinson, Jennifer N
PY  - 2018
DA  - 2018/9/25
TI  - Exploring the Needs of Adolescents With Sickle Cell Disease to Inform a Digital Self-Management and Transitional Care Program: Qualitative Study
JO  - JMIR Pediatr Parent
SP  - e11058
VL  - 1
IS  - 2
KW  - sickle cell
KW  - adolescent
KW  - cell phone
KW  - self-management
KW  - internet
KW  - qualitative research
KW  - needs assessment
KW  - transitional care
AB  - 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. 
SN  - 2561-6722
UR  - http://pediatrics.jmir.org/2018/2/e11058/
UR  - https://doi.org/10.2196/11058
UR  - http://www.ncbi.nlm.nih.gov/pubmed/31518307
DO  - 10.2196/11058
ID  - info:doi/10.2196/11058
ER  -