Self-management for youth and young adults with childhood-onset chronic conditions: A scoping review of parent and caregiver perspectives.

Authors

Monique M Ridosh, Lin Li, Kristin Cleverley, Lexi Ewing, Linda Tirabassi Mathis, Cara C Young, Brooke Allemang, Catherine A Harwood, Lynn Kysh, Jennifer Emilie Mannino, Jihye Lee, Sharon Hudson, Manu Raam, Benjamin C Schwartzman, Cecily L Betz

Published in

Health care transitions. Volume 4. Pages 100148. Epub Jul 24, 2026.

Abstract

The purpose of this scoping review was to explore self-management research conducted in the health care transition (HCT) literature, focusing on youth and young adults (YYA) with childhood-onset chronic conditions (CCC) and involving data collected from parents/caregivers regarding their perceptions and involvement in their child's self-management.
Articles from a larger scoping review (N = 640) that provided an overview of all articles published exploring self-management research in HCT literature were assessed for the extent to which parent/caregiver perspectives of self-management among their YYA aged 9-35 years with CCC were included in the HCT literature. The initial review criteria (protocol published in 2021) were modified to focus on primary research publications. The review process was guided by the JBI Manual for Evidence Synthesis. Study samples and methods were synthesized using descriptive analyses. Purpose statements were analyzed based on the domains of the Health Care Transition Research Consortium (HCTRC) HCT model.
Studies (n = 218) including parent/caregiver perspectives were published from 1992 to 2025. Demographic data reported in these publications included parent/caregiver type (i.e., mother/father; 52%), age (26.6%), and race/ethnicity (21.5%). Research methods included quantitative (53%), qualitative (38.5%) and mixed (8.2%) with the majority (83%) employing a cross-sectional design. The Domains of HCTRC HCT model addressed in the literature in descending order were Individual (90%), Family/Social Support (62%) Health Care System (35%) and Environment (4%).
Research conducted with parental/caregiver input has numerous shortcomings, including inconsistent reporting of demographic data, and overreliance on cross-sectional designs. Research and practice recommendations are suggested to advance the development and implementation of inclusive models of care.

PMID:
42668529
Bibliographic data and abstract were imported from PubMed on 30 Aug 2026.

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