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; NAVKIDS2 trial steering committee; NAVKIDS trial steering committee

doi:10.1016/j.ekir.2024.08.029

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

Kidney Int Rep. 2024 Sep 2;9(11):3177-3189. doi: 10.1016/j.ekir.2024.08.029. eCollection 2024 Nov.

Authors

Chandana Guha^{1

2}, Rabia Khalid^{3

4}, Kylie-Ann Mallitt^{1

2

5}, Anita van Zwieten^{1

2}, Anna Francis⁶, Siah Kim^{1

2}, Armando Teixeira-Pinto^{1

2}, Martha Aquino⁷, Amelie Bernier-Jean⁸, David W Johnson^{7

9

10}, Deirdre Hahn^{2

11}, Donna Reidlinger¹², Elizabeth G Ryan^{13

14}, Fiona Mackie¹⁵, Hugh McCarthy^{2

3}, Julie Varghese⁷, Charani Kiriwandeniya⁷, Kirsten Howard¹⁶, Nicholas Larkins^{17

18}, Luke Macauley¹⁹, Amanda Walker²⁰, Martin Howell^{1

2

16}, Patrina Caldwell^{2

3}, Reginald Woodleigh²¹, Shilpanjali Jesudason²², Simon Carter^{20

23}, Sean Kennedy^{5

15}, Stephen Alexander^{2

3

11}, Steven McTaggart^{6

12}, Jonathan C Craig²⁴, Carmel M Hawley^{7

10}, Germaine Wong^{1

2}, Allison Jaure^{1

2}; NAVKIDS2 trial steering committee; NAVKIDS trial steering committee

Affiliations

¹ Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
² Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.
³ The University of Sydney, Children's Hospital Westmead Clinical School, Westmead, New South Wales, Australia.
⁴ Charles Perkins Centre, The University of Sydney, New South Wales, Australia.
⁵ School of Clinical Medicine, Faculty of Medicine and Health, University of New South Wales, Sydney, New South Wales, Australia.
⁶ Child and Adolescent Renal Services, Children's Health Queensland Hospital and Health Service, Brisbane, Queensland, Australia.
⁷ Australasian Kidney Trials Network, The University of Queensland, Brisbane, Queensland, Australia.
⁸ CIUSSS du Nord-de-l'Île de Montréal, University of Montréal, Montreal, Quebec, Canada.
⁹ Department of Kidney and Transplant Services, Princess Alexandra Hospital, Brisbane, Queensland, Australia.
¹⁰ Translational Research Institute, Brisbane, Queensland, Australia.
¹¹ Discipline of Child and Adolescent Health, Faculty of Medicine and Health, The University of Sydney, New South Wales, Australia.
¹² Centre for Health Services Research, The University of Queensland, Brisbane, Queensland, Australia.
¹³ QCIF Facility for Advanced Bioinformatics, Institute for Molecular Bioscience, The University of Queensland, Brisbane, Australia.
¹⁴ School of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia.
¹⁵ Department of Nephrology, Sydney Children's Hospital, Randwick, Sydney, New South Wales, Australia.
¹⁶ Menzies Centre for Health Policy and Economics and Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
¹⁷ Department of Nephrology, Perth Children's Hospital, Perth, Western Australia, Australia.
¹⁸ School of Medicine, University of Western Australia, Perth, Western Australia, Australia.
¹⁹ Kidney Health Australia, Australia.
²⁰ Murdoch Children's Research Institute, Melbourne, Victoria, Australia.
²¹ Prostate and Breast Cancer Foundation (CanCare), Sydney, New South Wales, Australia.
²² Central Northern Adelaide Renal and Transplantation Service (CNARTS), Royal Adelaide Hospital, Adelaide, South Australia, Australia.
²³ Department of Paediatrics, University of Melbourne, Melbourne, Australia.
²⁴ College of Medicine and Public Health, Flinders University, Adelaide, South Australia.

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.

Keywords: access; caregivers; chronic kidney disease; healthcare; pediatric.