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Caregiver strategies supporting community participation among children and youth with or at risk for disabilities: a mixed-methods study
Umeå University, Faculty of Science and Technology, Department of Computing Science. Occupational Therapy, University of Illinois Chicago, IL, Chicago, United States; Computer Science, University of Illinois Chicago, IL, Chicago, United States; Children’s Participation in Environment Research Lab, University of Illinois Chicago, IL, Chicago, United States.ORCID iD: 0000-0003-1290-9441
Children’s Participation in Environment Research Lab, University of Illinois Chicago, IL, Chicago, United States.
Children’s Participation in Environment Research Lab, University of Illinois Chicago, IL, Chicago, United States.
School of Physical and Occupational Therapy, McGill University, CA, Montreal, United States; CanChild Centre for Childhood Disability Research, McMaster University, CA, Hamilton, United States.
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2024 (English)In: Frontiers in Pediatrics , E-ISSN 2296-2360, Vol. 12, article id 1345755Article in journal (Refereed) Published
Abstract [en]

Introduction: The purpose of this mixed-methods study is to examine the role of caregiver strategies to support community participation among children and youth with disabilities and those at risk, from the caregiver perspective. For the quantitative phase, we tested the hypothesized positive effect of participation-focused caregiver strategies on the relationship(s) between participation-related constructs and community participation attendance and involvement. For the qualitative phase, we solicited caregiver perspectives to explain the quantitative findings.

Methods: An explanatory sequential mixed-methods design (QUAN > qual) was used. For the quantitative phase, we conducted secondary analyses of data collected during a second follow-up phase of a longitudinal cohort study, including 260 families of children and youth (mean age: 13.5 years) with disabilities and those at risk [i.e., 120 families of children and youth with craniofacial microsomia (CFM); 140 families of children and youth with other types of childhood-onset disabilities]. Data were collected through the Participation and Environment Measure—Children and Youth, the Pediatric Quality of Life Inventory, and the Child Behavior Checklist and analyzed using structural equation modeling. For the qualitative phase, we conducted semi-structured interviews with eight caregivers of children and youth with disabilities and those at risk (i.e., three caregivers of children and youth with CFM; five caregivers of children and youth with other childhood-onset disabilities). Interviews were transcribed verbatim and inductively content-analyzed.

Results: Our model reached acceptable to close model fit [CFI = 0.952; RMSEA = 0.068 (90% CI = 0.054–0.082); SRMR = 0.055; TLI = 0.936], revealing no significant effect of the number of participation-focused caregiver strategies on the relationships between participation-related constructs (e.g., activity competence, environment/context) and community participation in terms of attendance and involvement. The qualitative findings revealed three main categories for how caregivers explained these quantitative results: (1) caregiver workload and supports needed for implementing strategies; (2) caregivers careful strategy quality appraisal; and (3) community setting characteristics hindering successful strategy implementation.

Discussion: The findings suggest that the insignificant effect of the number of caregiver strategies may be explained by the intensified need for caregiver effort and support to develop and implement quality strategies that are responsive to community setting characteristics.

Place, publisher, year, edition, pages
Frontiers Media S.A., 2024. Vol. 12, article id 1345755
Keywords [en]
attendance, childhood-onset disability, craniofacial microsomia, involvement, pediatric rehabilitation
National Category
Pediatrics
Identifiers
URN: urn:nbn:se:umu:diva-221836DOI: 10.3389/fped.2024.1345755ISI: 001175680000001Scopus ID: 2-s2.0-85186245190OAI: oai:DiVA.org:umu-221836DiVA, id: diva2:1843974
Available from: 2024-03-12 Created: 2024-03-12 Last updated: 2025-04-24Bibliographically approved

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Kaelin, Vera C.

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