Moving on Up: Shifting Sickle Cell Disease Management During Adolescence in Preparation for Adulthood
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Le résumé fourni par la source
INTRODUCTION: Sickle cell disease (SCD) is a progressive, life-limiting disease that begins in childhood. Effective SCD management is critical during the transition from pediatric to adult care when morbidity and mortality risks increase. Yet, this transition often coincides with disease-management responsibilities shifting from parents to adolescents, raising questions about adolescents' preparedness. The current qualitative study examines adolescents' (ages 13-17) and their parents' experiences with shifting disease-management responsibilities in preparation for transitioning to adult care. METHODS: Adolescents with SCD (n = 21; ages 13-17) and their parents (n = 18) participated in individual semi-structured interviews exploring when and how disease-management responsibilities shift during adolescence and concerns regarding transitioning from pediatric to adult care. Data were transcribed verbatim, cleaned, systematically coded, and analyzed using applied thematic analysis. RESULTS: Adolescents primarily identified as Black/African American or Afro-Latino (91%) and male (62%). Parents were primarily mothers (82%), publicly insured (52%), and Black/African American (94%). Adolescents and parents emphasized feeling unprepared to transition from pediatric to adult care. Gradually shifting SCD management responsibilities from adolescents to parents fostered adolescents' self-efficacy. Yet, both adolescents and parents described how insufficient knowledge of the transition process and adolescents' underdeveloped self-advocacy skills fueled their concerns about eventually transitioning to adult care. DISCUSSION: Understanding how and when adolescents assume more disease-management responsibilities may inform ways to mitigate morbidity and mortality during adolescence and emerging adulthood. Findings inform potential approaches for supporting adolescents' acquisition of disease-management skills necessary for transition readiness and that could ultimately reduce risk of premature morbidity and mortality in adulthood.
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Le contrôle bibliographique ouvert
DOI retrouvé dans Crossref DOI retrouvé ; titre concordant.
- Titre Crossref
- Moving on Up: Shifting Sickle Cell Disease Management During Adolescence in Preparation for Adulthood
- Date Crossref
- 14/05/2026
- Éditeur
- Wiley
- Type
- journal-article
Ce recoupement confirme des métadonnées liées au DOI. Il ne confirme ni la méthode ni les conclusions de l’étude, et il ne compte pas comme une seconde source scientifique indépendante.
Où se fait cette recherche
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Boston University Department of Health Law Policy & pays non établi dans la noticeUniversité ou école supérieure
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Boston Medical Center pays non établi dans la noticeÉtablissement de santé
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UMass Memorial Health Care pays non établi dans la noticeÉtablissement de santé
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University of Massachusetts Chan Medical School pays non établi dans la noticeUniversité ou école supérieure
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UMass Memorial Medical Center pays non établi dans la noticeÉtablissement de santé
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Nemours Children's Hospital Wilmington Delaware USA pays non établi dans la noticeÉtablissement de santé
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Child Health Equity Center Department of Pediatrics pays non établi dans la noticeInstitution
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UMass Memorial Children's Medical Center Worcester Massachusetts USA pays non établi dans la noticeÉtablissement de santé
Department of Health Law Policy & — Boston University, Boston Medical Center et UMass Memorial Health Care, avec 5 autres affiliations.
Une affiliation ne permet pas de déduire la nationalité d’un auteur.