Authors
Anastasia Hughes, Andrea Matus Gonzalez, Anita van Zwieten, Chandana Guha, Simon Carter, Germaine Wong, Dale Coghlan, Amanda Dominello, Jonathan C Craig, Martin Howell, Siah Kim, Karine Manera, Colm O'Reilly, Javier Recabarren Silva, Angela Rejuso, Benedicte Sautenet, Nicole Scholes-Robertson, Amanda Sluiter, Rebecca Wu, Mignon McCulloch, Natalia Armijo, Ximena Atilano-Carsi, Patricia de la Cerda, Gabriel Alexis Gallardo Letelier, Carla Galvez, Nicole Gonzalez-Agüero, Maria Maldonado, Viola Pinto, Lilian Reyes, Lena Rodriguez, Angelica Rojo, Alejandro Sepúlveda, Luca G Torrisi, Andrea K Viecelli, Bashir Admani, Bethany J Foster, Alexander J Hamilton, Augustina Jankauskiene, Rebecca J Johnson, Jasmijn Kerklaan, Isaac Liu, Stephen D Marks, Cozumel S Pruette, Franz Schaefer, Sebastian Wolfenden, Allison Jaure, SONG-Kids Life participation Workshop Investigators38, SONG-Kids Life participation Workshop Investigators
Published in
Kidney international reports. Volume 11. Issue 11. Pages 107053. Epub Sep 01, 2026.
Abstract
The caregiver burden among parents of children with chronic kidney disease (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 life participation in parents of children with CKD, from the perspectives of their children, health professionals, and the parents themselves.
We thematically analyzed data from the Standardized Outcomes in Nephrology-Children and Adolescents Initiative (SONG-Kids) life participation workshops involving children with childhood CKD, parents or caregivers, and health professionals, for content related to perspectives on life participation among parents of children with CKD.
A total of 4 international consensus workshops were conducted (1 in-person in English and 3 online-2 in English and 1 in Spanish) with 171 participants, including 79 patients and parents or caregivers and 92 health professionals from 16 countries. Overall, 4 themes were identified-health priorities undermining ability to participate in activities and socialize; medical responsibilities conflicting with the nurturing parental role; impeding ability to work; and measuring and addressing life participation in parents of children with CKD.
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.
PMID:
42893258
Bibliographic data and abstract were imported from PubMed on 18 Oct 2026.
Read full publication at:
Please sign in
to see all details.
Advertisement
Stats
- Recommendations n/a n/a positive of 0 vote(s)
- Views 8
- Comments 0