Kidney International Reports (Nov 2024)
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,
- Deirdre Hahn,
- Donna Reidlinger,
- Elizabeth G. Ryan,
- Fiona Mackie,
- Hugh McCarthy,
- Julie Varghese,
- Charani Kiriwandeniya,
- Kirsten Howard,
- Nicholas Larkins,
- Luke Macauley,
- Amanda Walker,
- Martin Howell,
- Patrina Caldwell,
- Reginald Woodleigh,
- Shilpanjali Jesudason,
- Simon Carter,
- Sean Kennedy,
- Stephen Alexander,
- Steven McTaggart,
- Jonathan C. Craig,
- Carmel M. Hawley,
- Germaine Wong,
- Allison Jaure,
- Germaine Wong,
- Carmel Hawley,
- Allison Tong,
- Amanda Walker,
- Amelie Bernier-Jean,
- Anita van Zwieten,
- Anna Francis,
- Armando Teixeira-Pinto,
- Alistair Mallard,
- Chandana Guha,
- Charani Kiriwandeniya,
- David Johnson,
- Deirdre Hahn,
- Donna Reidlinger,
- Elaine Pascoe,
- Elizabeth Ryan,
- Fiona Mackie,
- Hugh J. McCarthy,
- Jonathan Craig,
- Julie Varghese,
- Kirsten Howard,
- Liza Vergara,
- Luke Macauley,
- Martin Howell,
- Michelle Irving,
- Nicholas Larkins,
- Patrina Caldwell,
- Rabia Khalid,
- Reg Woodleigh,
- Sean Kennedy,
- Shilpanjali Jesudason,
- Simon Carter,
- Stephen Alexander,
- Steve McTaggart
Affiliations
- Chandana Guha
- Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia; Correspondence: Chandana Guha, Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, New South Wales 2145, Australia.
- Rabia Khalid
- The University of Sydney, Children’s Hospital Westmead Clinical School, Westmead, New South Wales, Australia; Charles Perkins Centre, The University of Sydney, New South Wales, Australia
- Kylie-Ann Mallitt
- Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia; School of Clinical Medicine, Faculty of Medicine and Health, University of New South Wales, Sydney, New South Wales, Australia
- Anita van Zwieten
- Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia
- Anna Francis
- Child and Adolescent Renal Services, Children’s Health Queensland Hospital and Health Service, Brisbane, Queensland, Australia
- Siah Kim
- Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia
- Armando Teixeira-Pinto
- Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia
- Martha Aquino
- Australasian Kidney Trials Network, The University of Queensland, Brisbane, Queensland, Australia
- Amelie Bernier-Jean
- CIUSSS du Nord-de-l'Île de Montréal, University of Montréal, Montreal, Quebec, Canada
- David W. Johnson
- Australasian Kidney Trials Network, The University of Queensland, Brisbane, Queensland, Australia; Department of Kidney and Transplant Services, Princess Alexandra Hospital, Brisbane, Queensland, Australia; Translational Research Institute, Brisbane, Queensland, Australia
- Deirdre Hahn
- Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia; Discipline of Child and Adolescent Health, Faculty of Medicine and Health, The University of Sydney, New South Wales, Australia
- Donna Reidlinger
- Centre for Health Services Research, The University of Queensland, Brisbane, Queensland, Australia
- Elizabeth G. Ryan
- QCIF Facility for Advanced Bioinformatics, Institute for Molecular Bioscience, The University of Queensland, Brisbane, Australia; School of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia
- Fiona Mackie
- Department of Nephrology, Sydney Children’s Hospital, Randwick, Sydney, New South Wales, Australia
- Hugh McCarthy
- Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia; The University of Sydney, Children’s Hospital Westmead Clinical School, Westmead, New South Wales, Australia
- Julie Varghese
- Australasian Kidney Trials Network, The University of Queensland, Brisbane, Queensland, Australia
- Charani Kiriwandeniya
- Australasian Kidney Trials Network, The University of Queensland, Brisbane, Queensland, Australia
- Kirsten Howard
- Menzies Centre for Health Policy and Economics and Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia
- Nicholas Larkins
- Department of Nephrology, Perth Children’s Hospital, Perth, Western Australia, Australia; School of Medicine, University of Western Australia, Perth, Western Australia, Australia
- Luke Macauley
- Kidney Health Australia, Australia
- Amanda Walker
- Murdoch Children’s Research Institute, Melbourne, Victoria, Australia
- Martin Howell
- Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia; Menzies Centre for Health Policy and Economics and Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia
- Patrina Caldwell
- Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia; The University of Sydney, Children’s Hospital Westmead Clinical School, Westmead, New South Wales, Australia
- Reginald Woodleigh
- Prostate and Breast Cancer Foundation (CanCare), Sydney, New South Wales, Australia
- Shilpanjali Jesudason
- Central Northern Adelaide Renal and Transplantation Service (CNARTS), Royal Adelaide Hospital, Adelaide, South Australia, Australia
- Simon Carter
- Murdoch Children’s Research Institute, Melbourne, Victoria, Australia; Department of Paediatrics, University of Melbourne, Melbourne, Australia
- Sean Kennedy
- School of Clinical Medicine, Faculty of Medicine and Health, University of New South Wales, Sydney, New South Wales, Australia; Department of Nephrology, Sydney Children’s Hospital, Randwick, Sydney, New South Wales, Australia
- Stephen Alexander
- Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia; The University of Sydney, Children’s Hospital Westmead Clinical School, Westmead, New South Wales, Australia; Discipline of Child and Adolescent Health, Faculty of Medicine and Health, The University of Sydney, New South Wales, Australia
- Steven McTaggart
- Child and Adolescent Renal Services, Children’s Health Queensland Hospital and Health Service, Brisbane, Queensland, Australia; Centre for Health Services Research, The University of Queensland, Brisbane, Queensland, Australia
- Jonathan C. Craig
- College of Medicine and Public Health, Flinders University, Adelaide, South Australia
- Carmel M. Hawley
- Australasian Kidney Trials Network, The University of Queensland, Brisbane, Queensland, Australia; Translational Research Institute, Brisbane, Queensland, Australia
- Germaine Wong
- Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia
- Allison Jaure
- Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia
- Germaine Wong
- Carmel Hawley
- Allison Tong
- Amanda Walker
- Amelie Bernier-Jean
- Anita van Zwieten
- Anna Francis
- Armando Teixeira-Pinto
- Alistair Mallard
- Chandana Guha
- Charani Kiriwandeniya
- David Johnson
- Deirdre Hahn
- Donna Reidlinger
- Elaine Pascoe
- Elizabeth Ryan
- Fiona Mackie
- Hugh J. McCarthy
- Jonathan Craig
- Julie Varghese
- Kirsten Howard
- Liza Vergara
- Luke Macauley
- Martin Howell
- Michelle Irving
- Nicholas Larkins
- Patrina Caldwell
- Rabia Khalid
- Reg Woodleigh
- Sean Kennedy
- Shilpanjali Jesudason
- Simon Carter
- Stephen Alexander
- Steve McTaggart
- DOI
- https://doi.org/10.1016/j.ekir.2024.08.029
- Journal volume & issue
-
Vol. 9,
no. 11
pp. 3177 – 3189
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.
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