Identifying strategies to improve life participation in children with chronic kidney disease: report from multinational SONG workshops
BACKGROUND: Children and young people with chronic kidney disease (CKD) experience impaired life participation, which has been identified as a critically important outcome for them. However, little remains known about strategies to improve life participation in children with CKD. The aim of this report was to identify strategies to improve life participation in children with CKD. METHODS: Four workshops (one in-person [English language], three online [two English and one Spanish language]) were held with 79 patients and caregivers, and 92 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 burden included allowing flexibility in scheduling appointments, enabling better management of medications, and controlling debilitating side-effects. Facilitating opportunities in 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 health, self-esteem and motivation included building confidence and addressing depression and anxiety. CONCLUSION: Patients with CKD, caregivers and health professionals identified a need for strategies for life participation to address the domains of personalized life priorities, minimizing treatment burden, facilitating access to opportunities and strengthening wellbeing. Further development and evaluation of interventions that address these are needed to improve life participation in children with CKD.
Authors
- Alexander Hamilton (ORCID: https://orcid.org/0000-0002-0730-4897)
- Viola Pinto (ORCID: https://orcid.org/0000-0001-7831-7540)
- Simon Carter (ORCID: https://orcid.org/0000-0003-1838-3479)
- Mignon McCulloch (ORCID: https://orcid.org/0000-0003-2876-4785)
- Carla Gálvez
- Bénédicte Sautenet (ORCID: https://orcid.org/0000-0001-8430-4543)
- Siah Kim (ORCID: https://orcid.org/0000-0003-3964-2046)
- Jonathan C. Craig (ORCID: https://orcid.org/0000-0002-2548-4035)
- Bethany J. Foster (ORCID: https://orcid.org/0000-0002-2753-442X)
- Jasmijn Kerklaan (ORCID: https://orcid.org/0000-0001-9145-9914)
- Patricia Cerda (ORCID: https://orcid.org/0000-0003-3108-9514)
- Rebecca J. Johnson (ORCID: https://orcid.org/0000-0002-0084-4727)
- Amanda Sluiter (ORCID: https://orcid.org/0009-0001-3003-4354)
- D W Coghlan
- Angélica Rojo
- Natalia Armijo
- Lena Rodriguez
- Isaac Liu
- Sebastian Wolfenden
- Andrea Matus González
- Rebecca Wu (ORCID: https://orcid.org/0009-0008-3977-7585)
- Bashir Admani
- Colm O'Reilly
- Angela Rejuso
- Nicole Gonzalez-Agüero
- Gabriel Alexis Gallardo Letelier
- Anita Van Zwieten (5655892)
- Javier Recabarren Silva
- Alejandro Sepúlveda
- Lilian Reyes
- Anastasia Hughes (ORCID: https://orcid.org/0009-0003-5512-0333)
- Stephen D Marks
- Maria Maldonado
- Germaine Wong (ORCID: https://orcid.org/0000-0001-8422-7269)
- Nicole Scholes-Robertson (ORCID: https://orcid.org/0000-0001-8260-0453)
- Franz Schaefer
- Martin Howell (ORCID: https://orcid.org/0000-0001-9740-712X)
- Luca G Torrisi
- Alicia Neu
- Andrea K Viecelli
- Augustina Jankauskiene
- Karine Manera (ORCID: https://orcid.org/0000-0002-0552-6074)
- Chandana Guha
- Amanda Dominello
- Allison Jaure
- Ximena Atilano-Carsi
Institutions
- Université de Tours (FR)
- University of Technology Sydney (AU)
- University of Nairobi (KE)
- The University of Sydney (AU)
- Royal Children's Hospital (AU)
- Children's Mercy Hospital (US)
- Johns Hopkins University (US)
- Inserm (FR)
- The University of Queensland (AU)
- The University of Melbourne (AU)
- Flinders University (AU)
- Vilnius University (LT)
- Heidelberg University (DE)
- University of Exeter (GB)
- Royal Devon & Exeter NHS Foundation Trust (GB)
- Johns Hopkins Medicine (US)
- Montreal Children's Hospital (CA)
- Leiden University Medical Center (NL)
- Great Ormond Street Hospital (GB)
- Great Ormond Street Hospital for Children NHS Foundation Trust (GB)
- McGill University Health Centre (CA)
- Clínica Alemana (CL)
- University Hospital Heidelberg (DE)
- Children's Hospital at Westmead (AU)
- Flinders Medical Centre (AU)
- Centre Hospitalier Universitaire de Tours (FR)
- Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán (MX)
- Hospital Luis Calvo Mackenna (CL)
- Duke-NUS Medical School (SG)
- Nutrition Sciences (Belgium) (BE)
- Hospital Regional de Arica Doctor Juan Noé Crevani (CL)
- Instituto Nacional de Pediatria (MX)
- Murdoch Children's Research Institute (AU)
- Hospital del Niño (PA)
- Red Cross War Memorial Children's Hospital (ZA)
- University College London (GB)
- McGill University (CA)
- University of Chile (CL)
- Australasian College for Emergency Medicine (AU)
- Universidad Nacional Autónoma de México (MX)
- Macquarie University (AU)
Publication Details
- Journal
- Nephrology Dialysis Transplantation
- Published
- 2026-05-01
- DOI
- https://doi.org/10.1093/ndt/gfag099
- Primary Topic
- Dialysis and Renal Disease Management
- Type
- article
- Field-Weighted Citation Impact
- 0.00