Document Type
Article
Publication Date
2023
Publisher
Elsevier
Source Publication
Health Care Transitions
Source ISSN
2949-9232
Original Item ID
DOI: 10.1016/j.hctj.2023.100026
Abstract
Background
Adolescents with sickle cell disease (SCD) face unique challenges, especially during the critical health care transition from pediatric to adult care. The purpose of this study was to gather the perspectives of adolescents living with SCD and to describe their self-care management experiences prior to their move into the adult health care system.
Methods
Guided by the Theory of Self-Care Management for Sickle Cell Disease, this qualitative descriptive study used semi-structured interviews with 11 adolescents with SCD (M = 16.63 years, SD = 1.15). In addition to a demographic survey, adolescents answered interview questions about their perceptions of their self-care management, health care transition readiness, support, and spiritual well-being. Data were analyzed using a template analysis style.
Results
Four major themes were identified: attaining vocational aspirations, maintaining effective self-care management strategies, managing and maintaining social support, and building resilience through spirituality and religion. Maintaining, effective self-care management strategies had three threads: coping behaviors, health care transition needs, and self-care management strengths.
Discussion
Identifying self-care management resources and areas where further attention is needed can be helpful for health care providers when developing age specific plans. A tailored approach to care during this critical health care transition period can also build capacity for a successful transition for adolescents.
Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial-No Derivative Works 4.0 International License.
Recommended Citation
Clayton-Jones, Dora L.; Hamilton, Jill B.; Haglund, Kristin; Ong, Lee Za; Kennedy, Kalen C.; Peña, Sylvia; and Jenerette, Coretta, "Sickle Cell Disease and Adolescents’ Perspectives on Self-Care Management Resources" (2023). College of Education Faculty Research and Publications. 627.
https://epublications.marquette.edu/edu_fac/627
Comments
Published version. Health Care Transitions, Vol. 1 (2023). DOI. © 2023 The Author(s). Published by Elsevier Inc. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/bync-nd/4.0/).