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Perspectives of Caregivers on Access to Health Care for Children with CKD
Chandana Guha1,2, Rabia Khalid3,4, Kylie-Ann Mallitt1,2,5
1Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Insights
Caregivers of children with chronic kidney disease (CKD) face significant barriers to healthcare access, feeling disempowered and vulnerable. Improving access requires targeted strategies for socioeconomically and geographically disadvantaged families.
Area of Science:
- Pediatric Nephrology
- Health Services Research
- Sociology of Health
Background:
- Children with chronic kidney disease (CKD) experience inequitable healthcare access based on demographics like ethnicity, socioeconomic status, and location.
- Caregiver perspectives on accessing healthcare for pediatric CKD patients, particularly from disadvantaged backgrounds, remain under-explored.
Purpose of the Study:
- To describe caregiver perspectives on accessing healthcare for children with CKD.
- To focus on children from socioeconomically disadvantaged and/or rural/remote areas in Australia.
Main Methods:
- Semi-structured interviews were conducted with caregivers of Australian children (0-16 years) with CKD across all stages.
- Participants were purposively sampled from five centers, representing low socioeconomic status backgrounds and/or rural/remote locations.
- Interview transcripts were thematically analyzed.
Main Results:
- Six key themes emerged: lack of agency, loss of trust in clinicians, organizational rigidity, compounding caregiving burden, intensified family strain, and building resilience.
- Caregivers reported feeling disempowered, confused by medical advice, frustrated by systemic barriers, and facing significant financial and emotional strain.
- Despite challenges, empowerment through education and confidence in medical support were identified as resilience factors.
Conclusions:
- Caregivers of children with CKD from disadvantaged backgrounds experience disempowerment and vulnerability in healthcare access.
- There is a critical need for strategies to enhance healthcare access for socioeconomically and geographically disadvantaged families with pediatric CKD.
- Addressing these systemic issues is crucial for improving health equity in pediatric chronic kidney disease care.
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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