Abstract: FR-PO0742
Identifying Strategies to Improve Life Participation in Children with CKD: Report from Multinational Workshops
Session Information
- Pediatric Nephrology: CKD, ESKD, and Glomerular Diseases
November 07, 2025 | Location: Exhibit Hall, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Pediatric Nephrology
- 1900 Pediatric Nephrology
Authors
- Hughes, Anastasia, The University of Sydney School of Public Health, Sydney, New South Wales, Australia
- Jaure, Allison, The University of Sydney School of Public Health, Sydney, New South Wales, Australia
Group or Team Name
- SONG Initiative.
Background
Children with chronic kidney disease (CKD) experience impaired life participation, which has been identified as critically important outcome for children with CKD. However, little remains known about strategies to improve life participation in children with CKD. The aim of the workshops was to identify strategies to improve life participation in children and young people with CKD.
Methods
Four workshops (one in-person [English language], three online [two English and one Spanish language]) were held with 54 patients and caregivers, and 118 health professionals from 16 countries to discuss strategies and interventions to improve life participation in children with CKD. Transcripts were thematically analyzed.
Results
Four themes were identified: emphasizing life priorities involved identifying and addressing patient values, focusing on freedom not restrictions, routinely assessing and monitoring life participation, and establishing and achieving goals. Minimizing treatment and disease burden included allowing flexibility in scheduling appointments, enabling better management of medications, and controlling debilitating side-effects. Facilitating opportunities in clinical and community settings encompassed providing ways to engage in education, encouraging engagement in social activities, promoting physical activity and supporting work and career aspirations. Fortifying mental resilience and motivation included building confidence and addressing depression and anxiety.
Conclusion
Patients with CKD, parents and health professionals believed there is a need to facilitate access to opportunities for improving life participation in clinical and community settings and embedding strategies in self-management and personal development. Further development and evaluation of interventions that address these are needed to better address life participation in children with CKD.
Funding
- Government Support – Non-U.S.