Life participation in parents of children with chronic kidney disease

Background The caregiver burden among parents of children with CKD is high and can impair their life participation, which may in turn have negative consequences on their children's care and outcomes. We aim to describe effects on the life participation in parents of children with CKD, from the perspectives of their children, health professionals, and their own. Methods We thematically analyzed data from the Standardised Outcomes in Nephrology – Children and Adolescents Initiative (SONG-Kids) life participation workshops involving children with childhood CKD, parents/caregivers, and health professionals, for content related to perspectives on life participation among parents of children with CKD. Results Four international consensus workshops were conducted (one in-person in English language and three online - two in English and one in Spanish) with 171 participants including 79 patients and parents/caregivers and 92 health professionals from 16 countries. Four themes were identified: health priorities undermining ability to participate in activities and socialise; medical responsibilities conflicting with the nurturing parental role; impeding ability to work; and measuring and addressing life participation in parents of children with CKD. Conclusion Managing parental and disease-related responsibilities can impair life participation in parents of children with CKD, particularly in the areas of work and social activities. Strategies to identify and address parental life participation appear to be needed, which may include interventions to alleviate caregiver burden and distress.

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Publication Details

Journal
Kidney International Reports
Published
2026-09-01
DOI
https://doi.org/10.1016/j.ekir.2026.107053
Primary Topic
Childhood Cancer Survivors' Quality of Life
Type
article
Field-Weighted Citation Impact
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article

Life participation in parents of children with chronic kidney disease

Cozumel S. Pruette, Viola Pinto, Simon Carter, Mignon McCulloch et al.
Kidney International Reports
Childhood Cancer Survivors' Quality of Life
article

Life participation in parents of children with chronic kidney disease

Cozumel S. Pruette, Viola Pinto, Simon Carter, Mignon McCulloch, Carla Gálvez, Bénédicte Sautenet, Siah Kim, Jonathan C. Craig, Jasmijn Kerklaan, Patricia Cerda, Rebecca J. Johnson, Amanda Sluiter, Angélica Rojo, Natalia Armijo, Lena Rodriguez, Isaac Liu, Sebastian Wolfenden, Andrea Matus González, Bashir Admani, Luca G Torrisi, Colm O'Reilly, Angela Rejuso, Nicole Gonzalez-Agüero, Gabriel Alexis Gallardo Letelier, Anita Van Zwieten (5655892), Stephen D. Marks, Rebecca Wu, Alejandro Sepúlveda, Lilian Reyes, Anastasia Hughes, Maria Maldonado, Amanda Dominello, Ximena Atilano-Carsi, Dale Coghlan, Bethany J. Foster, Javier Recabarren Silva, Alexander J. Hamilton, Chandana Guha, Augustina Jankauskiene, Andrea K. Viecelli, Germaine Wong, Martin Howell, Franz Schaefer, Nicole Scholes-Robertson, Karine Manera, Allison Jaure
article en

Abstract

Background The caregiver burden among parents of children with CKD is high and can impair their life participation, which may in turn have negative consequences on their children's care and outcomes. We aim to describe effects on the life participation in parents of children with CKD, from the perspectives of their children, health professionals, and their own. Methods We thematically analyzed data from the Standardised Outcomes in Nephrology – Children and Adolescents Initiative (SONG-Kids) life participation workshops involving children with childhood CKD, parents/caregivers, and health professionals, for content related to perspectives on life participation among parents of children with CKD. Results Four international consensus workshops were conducted (one in-person in English language and three online - two in English and one in Spanish) with 171 participants including 79 patients and parents/caregivers and 92 health professionals from 16 countries. Four themes were identified: health priorities undermining ability to participate in activities and socialise; medical responsibilities conflicting with the nurturing parental role; impeding ability to work; and measuring and addressing life participation in parents of children with CKD. Conclusion Managing parental and disease-related responsibilities can impair life participation in parents of children with CKD, particularly in the areas of work and social activities. Strategies to identify and address parental life participation appear to be needed, which may include interventions to alleviate caregiver burden and distress.

Kidney International Reports
Universidad de Santiago de Chile (CL), Université de Tours (FR), The University of Sydney (AU), Children's Mercy Hospital (US), Johns Hopkins University (US), Inserm (FR), Flinders University (AU), Heidelberg University (DE), Johns Hopkins Medicine (US), Leiden University Medical Center (NL), Clínica Alemana (CL), University Hospital Heidelberg (DE), Children's Hospital at Westmead (AU), Flinders Medical Centre (AU), Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán (MX), Hospital Luis Calvo Mackenna (CL), Duke-NUS Medical School (SG), Hospital Regional de Arica Doctor Juan Noé Crevani (CL), Miguel de Cervantes University (CL), Red Cross War Memorial Children's Hospital (ZA), University of Chile (CL)
Openalex Percentile: Top 7%
Childhood Cancer Survivors' Quality of Life
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