Year: 2026
Type: article
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.
Source: Kidney International Reports
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, Abigail Navarro, Aditi Sinha, Alejandra Abigail Landana Amador, Alejandro Grandon, Alicia Neu, Aliza Thompson, Allison Dart, Amalia Welsh, Amanda Dickens, Andrea Vogel, Angela Hidalgo, Angeles Castro, Anke Raaijmakers, Anna Francis, Antonieta Pasco, Antonia Cordera, Arturo Bermúdez, Augustina Jankauskiene, Belinda Vandepeer-Hamber, Brodie Rijsdijk, Caitlin Fox, Carla Carcamo, Carolay Yañez Mendez, Catalina Belen Ramirez Reyes, Cesar Montes, Chad Maidment, Chanel Prestidge, Charmaine Lok, Christoph Aufricht, Chunyan Wang, Connie Rhee, Cozumel Pruette, Cristian Leiva, Cristina Garmendia, Daisy Cardenas, Dalia Iracema Mendiola Ramirez, David Gonzalez, Debbie Gipson, Deborah Mendez, Delphine Nelson, Denisse Cotapos, Dhanusya Sivananthan, Dominik Juarez, Dorey Glenn, Doyle Strachan, Elizabeth Hendress, Elvia Daniela Fernandez Nava, Fernanda Baeza Reyes, Fernanda Gutierrez, Fernando Apaz, Gabriel Mendoza, Gladys Paola Reyes Ramirez, Glenda Moonsamy, Hector Reimil, Helen Coolican, Hong Xu, Hugh McCarthy, Hui Kim Yap, Ian Rijsdijk, Ieyesha Roberts, Ignacia Correa Heresmann, Ignacia Leiva Casa, Irita Spundzevičienė, Ilse Williams, Isaac Avila, Isabella de Souza, Isidora Fortunate Cavieres, Jacqueline Starbin, Jae Shin, James Xu, Joana Heresmann, Joanne Jones, John Mahan, Jorge Bazaes, Jorge Gutierrez, Joseph Flynn, Julija Starkute, Jun Oh, Justin de Souza, Justine Bacchetta, Katherine Freire, Kenneth Wilkins, Kezia Hamber, Keia Sanderson, Kimberly Hollitt, Kirtida Mistry, Liz Strachan, Loreto Molina, Luca Torrisi, Ludvika Starkiene, Luis Bermúdez, Luis Felipe, Luis Villanueva, Luke McAuley, Madeleine Reicher, Maria Eugenia Tellez Gonzalez, María Luisa Ceballos, Mario Hamber, Martina Arce, Matias Valeria, Meda Spundzevičiūtė, Melissa Saavedra, Michelle Denburg, Mina Matsuda-Abedini, Nicholas Larkins, Nicola Rijsdijk, Noa Amir, Olivia Boyer, Patience Sigwadi, Paty Mendoza, Pia Catalina, Rachael Kermond, Raimundo Correa, Robert Gardos, Rafael Hernandez, Rafael Reimil Navarro, Rebecca Johnson, Regina Castro, Rodrigo Fortunate, Ronald Lopez, Sandra Amaral, Sarah Marokakis, Sean Kennedy, Sebastian Wolfenden, Simone Fitzgerald, Sofia Silva, Stephen Alexander, Stephen Cornish, Stephen Hooper, Steven McTaggart, Susan Samuel, Susana Rocha, Tannia Valenzuela Hidalgo, Thomas Forbes, Tia Williams, Valentina Flores Mendiola, Vanessa Chacin, Ximena Rossello, Yamila Rubio, Yvonne Farquharson
Institutions: The University of Sydney, Children's Hospital at Westmead, Université de Tours, Inserm, methodS in Patient-centered outcomes and HEalth ResEarch, Université de Nantes, Nantes Université, Flinders University, University of Cape Town, Red Cross War Memorial Children's Hospital, Hospital Luis Calvo Mackenna, Hospital Regional de Arica Doctor Juan Noé Crevani, Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán, University of Chile, Children's Mercy Hospital, Leiden University Medical Center, Clínica Alemana, Duke-NUS Medical School, Johns Hopkins University, Heidelberg University, University Hospital Heidelberg, Hospital Dr. Exequiel González Cortés
Language: English
Topic: Nursing care and research
Subfield: Pharmacy
Field: Health Professions
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $2,800
OpenAlex ID: W7204938979