Evidence map›Paper›PMID 42893258›Full record

ArticleKidney international reports2026

Life Participation in Parents of Children With CKD.

Anastasia Hughes, Andrea Matus Gonzalez, Anita van Zwieten, Chandana Guha, Simon Carter, Germaine Wong, Dale Coghlan, Amanda Dominello, Jonathan C Craig, Martin Howell and 38 more

Abstract read
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In one paragraph

Article in Kidney international reports, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

48 authors.

Anastasia HughesSydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
Andrea Matus GonzalezSydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
Anita van ZwietenSydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
Chandana GuhaSydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
Simon CarterDepartment of Nephrology, The Royal Children's Hospital, Melbourne, Australia.
Germaine WongSydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
Dale CoghlanFlinders Health and Medical Research Institute, Flinders University, Bedford Park, South Australia, Australia.
Amanda DominelloSydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
Jonathan C CraigFlinders Health and Medical Research Institute, Flinders University, Bedford Park, South Australia, Australia.
Martin HowellSydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
Siah KimSydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
Karine ManeraSydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
Colm O'ReillySydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
Javier Recabarren SilvaSydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
Angela RejusoSydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
Benedicte SautenetFaculté de Médecine, Université Francois Rabelais, Tours, France.
Nicole Scholes-RobertsonSydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
Amanda SluiterSydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
Rebecca WuSydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
Mignon McCullochRed Cross War Memorial Children's Hospital, University of Cape Town, Cape Town, South Africa.
Natalia ArmijoUnidad de Nefrología, Hospital de niños Dr. Luis Calvo Mackenna, Santiago, Chile.
Ximena Atilano-CarsiDepartamento de Nefrología y Metabolismo Mineral, Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán, CP14000, Ciudad de México, México.
Patricia de la CerdaUnidad de Nefrología, Hospital de niños Dr. Luis Calvo Mackenna, Santiago, Chile.
Gabriel Alexis Gallardo LetelierHospital Regional Dr. Juan Noé Crevani, Arica, Chile.
Carla GalvezDepartamento de Pediatría y Cirugía Infantil, Facultad de Medicina, Universidad de Chile, Santiago, Chile.
Nicole Gonzalez-AgüeroUnidad de Nefrología, Hospital de niños Dr. Luis Calvo Mackenna, Santiago, Chile.
Maria MaldonadoHospital De Niños Dr. Exequiel González Cortés, San Miguel, Chile.
Viola PintoHospital De Niños Dr. Exequiel González Cortés, San Miguel, Chile.
Lilian ReyesDepartamento de Nefrología, Instituto Nacional de Pediatría, México City, México.
Lena RodriguezHospital De Niños Dr. Exequiel González Cortés, San Miguel, Chile.
Angelica RojoUnidad de Nefrología, Hospital de niños Dr. Luis Calvo Mackenna, Santiago, Chile.
Alejandro SepúlvedaUnidad de Nefrología, Hospital de niños Dr. Luis Calvo Mackenna, Santiago, Chile.
Luca G TorrisiSydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
Andrea K ViecelliFaculty of Medicine, Australasian Kidney Trials Network (AKTN), University of Queensland, Brisbane, Queensland, Australia.
Bashir AdmaniUniversity of Nairobi, Nairobi, Kenya.
Bethany J FosterDepartment of Paediatrics, McGill University, Montreal, Canada.
Alexander J HamiltonFaculty of Health and Life Sciences, University of Exeter Medical School, University of Exeter, Exeter, UK.
Augustina JankauskienePediatric Center, Institute of Clinical Medicine, Vilnius University, Vilnius, Lithuania.
Rebecca J JohnsonDivision of Developmental and Behavioral Health, Children's Mercy Kansas City, Kansas City, Missouri, USA.
Jasmijn KerklaanLeiden University Medical Center, Leiden, The Netherlands.
Isaac LiuDuke-NUS Medical School, Singapore, Singapore.
Stephen D MarksDepartment of Paediatric Nephrology, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
Cozumel S PruetteSchool of Medicine, Johns Hopkins University, Baltimore, Maryland, USA.
Franz SchaeferCenter for Pediatrics and Adolescent Medicine, University Hospital Heidelberg, Heidelberg, Germany.
Sebastian WolfendenSydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
Allison JaureSydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
SONG-Kids Life participation Workshop Investigators38
SONG-Kids Life participation Workshop Investigators

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Background: 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. Methods: 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. Results: 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. 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.

Indexed as

caregiver burdenchildrenchronic kidney diseaselife participationparent

Identifiers

PMID42893258
PMCPMC13676261

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.