Evidence map›Paper›PMID 42668529›Full record

ArticleHealth care transitions2026

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

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 and 5 more

Abstract read
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In one paragraph

Article in Health care transitions, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

15 authors.

Monique M RidoshMarcella Niehoff School of Nursing, Loyola University Chicago, Maywood, IL, USA.
Lin LiLawrence Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada.
Kristin CleverleyLawrence Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada.
Lexi EwingCentre for Addiction and Mental Health, Toronto, ON, Canada.
Linda Tirabassi MathisMiller Children's and Women's Hospital, Long Beach, CA, USA.
Cara C YoungThe University of Texas at Austin, School of Nursing, Austin, TX, USA.
Brooke AllemangRSW Hospital for Sick Children, Toronto, ON, Canada.
Catherine A HarwoodThe University of Texas at Austin School of Social work, Austin, TX, USA.
Lynn KyshF. William Blaisdell Medical Library, University of California at Davis, Sacramento, CA, USA.
Jennifer Emilie ManninoMolloy University, Barbara H Hagan School of Nursing and Health Sciences, Rockville Centre, NY, USA.
Jihye LeeInstitute for Nursing and Interprofessional Research, Children's Hospital Los Angeles, Los Angeles, CA, USA.
Sharon HudsonImplementation Science and Evaluation, AltaMed Institute for Health Equity, USA.
Manu RaamDivision of General Pediatrics, Children's Hospital Los Angeles, Keck School of Medicine of the University of Southern California, Los Angeles, CA, USA.
Benjamin C SchwartzmanDepartment of Pediatrics, University of Southern California Keck School of Medicine, University Center for Excellence in Developmental Disabilities, Children's Hospital Los Angeles, USA.
Cecily L BetzUniversity of Southern California Keck School of Medicine, Department of Pediatrics, USA.

Funding

Healthy Adolescent and Young Adult Self-Management in Spina BifidaK01NR018907 · NINR · LOYOLA UNIVERSITY CHICAGO · PI RIDOSH, MONIQUE · 2021 to 2023
$384k
NINR NIH HHS K01 NR018907
6 · The paper itself

Abstract

Objectives: 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. Methods: 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. Results: 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%). Conclusions: 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.

Indexed as

CaregiversHealth care transitionParentsReadiness assessmentScoping reviewSelf-managementYouth and young adults with childhood-onset chronic conditions

Identifiers

PMID42668529
PMCPMC13524618

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.