Evidence map›Paper›PMID 39534191›Full record

ArticleKidney international reports2024

Perspectives of Caregivers on Access to Health Care for Children with CKD.

Chandana Guha, Rabia Khalid, Kylie-Ann Mallitt, Anita van Zwieten, Anna Francis, Siah Kim, Armando Teixeira-Pinto, Martha Aquino, Amelie Bernier-Jean, David W Johnson and 25 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Kidney international reports, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing 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

3 citing papers in PubMed.

  1. Implementing Patient Navigation for Children With CKD.Kidney international reports · 2026
    Article
  2. Review
  3. Article
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

35 authors.

Chandana GuhaSydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Rabia KhalidThe University of Sydney, Children's Hospital Westmead Clinical School, Westmead, New South Wales, Australia.
Kylie-Ann MallittSydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Anita van ZwietenSydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Anna FrancisChild and Adolescent Renal Services, Children's Health Queensland Hospital and Health Service, Brisbane, Queensland, Australia.
Siah KimSydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Armando Teixeira-PintoSydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Martha AquinoAustralasian Kidney Trials Network, The University of Queensland, Brisbane, Queensland, Australia.
Amelie Bernier-JeanCIUSSS du Nord-de-l'Île de Montréal, University of Montréal, Montreal, Quebec, Canada.
David W JohnsonAustralasian Kidney Trials Network, The University of Queensland, Brisbane, Queensland, Australia.
Deirdre HahnCentre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.
Donna ReidlingerCentre for Health Services Research, The University of Queensland, Brisbane, Queensland, Australia.
Elizabeth G RyanQCIF Facility for Advanced Bioinformatics, Institute for Molecular Bioscience, The University of Queensland, Brisbane, Australia.
Fiona MackieDepartment of Nephrology, Sydney Children's Hospital, Randwick, Sydney, New South Wales, Australia.
Hugh McCarthyCentre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.
Julie VargheseAustralasian Kidney Trials Network, The University of Queensland, Brisbane, Queensland, Australia.
Charani KiriwandeniyaAustralasian Kidney Trials Network, The University of Queensland, Brisbane, Queensland, Australia.
Kirsten HowardMenzies Centre for Health Policy and Economics and Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Nicholas LarkinsDepartment of Nephrology, Perth Children's Hospital, Perth, Western Australia, Australia.
Luke MacauleyKidney Health Australia, Australia.
Amanda WalkerMurdoch Children's Research Institute, Melbourne, Victoria, Australia.
Martin HowellSydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Patrina CaldwellCentre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.
Reginald WoodleighProstate and Breast Cancer Foundation (CanCare), Sydney, New South Wales, Australia.
Shilpanjali JesudasonCentral Northern Adelaide Renal and Transplantation Service (CNARTS), Royal Adelaide Hospital, Adelaide, South Australia, Australia.
Simon CarterMurdoch Children's Research Institute, Melbourne, Victoria, Australia.
Sean KennedySchool of Clinical Medicine, Faculty of Medicine and Health, University of New South Wales, Sydney, New South Wales, Australia.
Stephen AlexanderCentre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.
Steven McTaggartChild and Adolescent Renal Services, Children's Health Queensland Hospital and Health Service, Brisbane, Queensland, Australia.
Jonathan C CraigCollege of Medicine and Public Health, Flinders University, Adelaide, South Australia.
Carmel M HawleyAustralasian Kidney Trials Network, The University of Queensland, Brisbane, Queensland, Australia.
Germaine WongSydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Allison JaureSydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
NAVKIDS2 trial steering committee
NAVKIDS trial steering committee

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Introduction: Inequitable access to health care based on demographic factors such as ethnicity, socioeconomic status and geographical location has been consistently found in children with chronic kidney disease (CKD). However, little is known about the perspectives of caregivers on accessing health care. We described caregivers' perspectives on accessing health care for children with CKD from socioeconomically disadvantaged backgrounds and/or rural or remote areas. Methods: Caregivers of Australian children aged 0 to 16 years, across all CKD stages, from low socioeconomic status backgrounds, and/or residing in rural or remote areas, purposively sampled from 5 centers, participated in semi structured interviews on accessing health care. Transcripts were analyzed thematically. Results: From 32 interviews, we identified 6 themes: lack of agency undermining ability to seek care (obscurity of symptoms, uncertain and confused about care processes, and vulnerable and unable to advocate), losing trust in clinicians (confused by inconsistencies and ambiguities in advice, and distressed by lack of collaborative care), exasperated by organizational rigidity (frustrated by bureaucratic roadblocks, lack of access to specialist care in rural and remote settings, and inadequacies of support programs), compounding burden of caregiving (unsustainable financial pressure, debilitating exhaustion, and asymmetry of responsibility), intensifying strain on family (uprooting to relocate, sibling stress and neglect, and depending on family support), building resilience and stability (empowerment through education and confidence in technical and medical support). Conclusions: Caregivers of children with CKD from disadvantaged backgrounds feel disempowered and vulnerable when accessing care for their child. Strategies are needed to improve access to health care for families who are socioeconomically or geographically disadvantaged.

Indexed as

accesscaregiverschronic kidney diseasehealthcarepediatric

Identifiers

PMID39534191
PMCPMC11551112

What Socratic holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

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 Socratic graph.