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Background: Chronic kidney disease (CKD) in children is a complex condition that has lifelong impacts and is associated with substantial morbidity and premature death. Caregivers experience a considerable care burden exacerbated by socioeconomic disparities that influence equitable, timely and effective access to care. We aimed to describe the perspectives of caregivers of children with CKD from low socioeconomic backgrounds or living in rural and remote areas on access to care.
Caregivers of children aged from 0-16 years, across all CKD stages, from low socioeconomic status backgrounds, and/or residing in rural or remote areas were eligible. The caregivers were sampled purposively from amongst the caregivers of children who were recruited for the NAVKIDS2 trial (a multi-center, waitlisted randomized controlled trial of a patient navigator intervention in children with chronic kidney disease that aimed to assess the effect of patient navigation on the self-rated health of children with CKD) from 5 pediatric nephrology units across Australia from 2019 to 2022. We conducted semi-structed interviews with 32 caregivers prior to commencement of the intervention and analysed the transcripts thematically.
We identified 6 themes: lack of agency undermining ability to seek care (obscurity of symptoms, uncertain and confused about care processes, vulnerable and unable to advocate), losing trust in clinicians (confused by inconsistencies and ambiguities in advice, distressed by lack of collaborative care), frustrated by bureaucratic roadblocks (exasperated by organizational rigidity, lack of access to expert and quality specialist care in vulnerable communities and settings, inadequacies of support programs), compounding burden of caregiving (unsustainable financial pressure, debilitating exhaustion, asymmetry of responsibility), intensifying strain on family (uprooting to relocate, sibling stress and neglect, depending on family support), building resilience and stability (empowerment through education, confidence in technical and medical support).
Caregivers of children with CKD face barriers including lack of disease information, limited access to specialised pediatric care and fragmented care coordination which can exacerbate their sense of disempowerment. Support in coordinating care through care-coordinators, and digital technology may improve access to care and ultimately lead to better outcomes.