Understanding caregivers' experiences in healthcare transition of young people with chronic conditions: A qualitative study on formal and informal caregivers.

Authors

Natwarin Janssens, Lisa Van Wilder, Luna Antonino, Sarah Van Den Berghe, Noa Van Der Haeghen, Ann Van Hecke, Kim Van Hoorenbeeck, Karsten Vanden Wyngaert, Lies Vyverman, Eva Goossens, Delphine De Smedt

Published in

Patient education and counseling. Volume 154. Pages 110332. Oct 16, 2026. Epub Oct 16, 2026.

Abstract

The prevalence of childhood‑onset chronic conditions continues to rise, including among adolescents and young adults (AYAs), increasing the need for coordinated transfer and transition from pediatric to adult care. Healthcare transition (HCT) aims to prepare AYAs for independent self‑management, yet many face uncertainties and up to 40% experience care discontinuity. Effective HCT requires collaboration among informal and formal caregivers, who acknowledge the need for care improvement but differ in HCT strategies. Few studies integrated both perspectives across prevalent chronic conditions, highlighting the need for multi‑perspective evidence to inform comprehensive HCT programs.
A qualitative study with a phenomenological approach was applied, using semi-structured and focus group interviews. Study participants were (i) parents of AYAs (14-25 years) diagnosed with asthma, type 1 diabetes, and/or obesity; (ii) pediatric, adult-care and primary care HCPs who were experienced in care delivery of asthma, type 1 diabetes, and/or obesity. Interview data were inductively, thematically analyzed using NVivo.
Twenty-two parents and twenty-seven HCPs participated. HCT elicited a state of ambivalence in both participant groups, with three main themes: (i) the inner conflict of letting go of AYA; (ii) role ambiguity; and (iii) (dis)harmony between healthcare settings. Subthemes included reluctance to relinquish responsibilities, as well as the need for acknowledgment and a clear delineation of roles and responsibilities. The application of a structured approach was considered a facilitating factor, while building trust remained challenging.
Findings complement predominantly AYA‑focused HCT research by highlighting the perspectives and support needs of parents and HCPs. Ambivalence emerged between fostering AYA independence and the difficulty for parents and pediatric HCPs of letting go, while gaps in coordination highlight the need for clearer roles and structured support.

PMID:
42913241
Bibliographic data and abstract were imported from PubMed on 24 Oct 2026.

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