Demonteil L, Corbel C, Thomas G, Brosseau-Beauvir A. Respiratory management of children with polyhandicap: assessment of the BREATHE caregiver education module. Disabil Rehabil. 2026 Jan 15:1-9. doi: 10.1080/09638288.2026.2616330. Epub ahead of print. PMID: 41542932.
Abstract
Purpose: This study aimed to evaluate the effects of a novel therapeutic education module designed to improve respiratory management in children with polyhandicap (PLH).
Method: A pre-post interventional study without a control group was conducted in two rehabilitation day hospitals. The module comprised five sessions delivered to caregivers by a physiotherapist and a nurse over one or two days. Caregivers’ respiratory skill scores were assessed at the beginning and at the end of the module. Associations between changes in respiratory skill scores and demographic or clinical factors were examined using correlation analyses and one-way ANOVA.
Results: Between March 2023 and June 2025, 39 children participated, and complete data were available for 29 caregiver-child pairs. The mean caregiver age was 38.6 ± 10.7 years. The mean respiratory skill score increased significantly from baseline to completion, indicating an overall improvement of 66.2%. No significant correlations were found between improvement and child or caregiver characteristics. Caregivers reported high satisfaction with both individual and group sessions.
Conclusion: The therapeutic education module appeared to enhanced caregivers’ perceived ability to manage respiratory care, supporting the integration of structured educational interventions into the management of children with complex neurodevelopmental disorders.
Keywords: PIMD; Polyhandicap; caregivers; children; respiratory skills; therapeutic education.
Plain language summary
Respiratory disorders in children with polyhandicap account for up to 80% of deaths.Therapeutic Patient Education programs can effectively enhance family caregivers’ skills in managing complex respiratory disorders in children with multiple disabilities.This program promotes mutual recognition of professional and lay expertise and restores a dynamic of co-constructing care.Rehabilitation professionals should integrate caregiver training and guidance into rehabilitation plans to improve caregiver competence and confidence.