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

Abstract

BackgroundInequitable access to health care based upon demographic factors such as ethnicity, socioeconomic status (SES) 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 healthcare. We described caregivers’ perspectives on accessing healthcare for children with CKD from socioeconomically disadvantaged backgrounds and/or rural or remote areas. MethodsCaregivers of Australian children aged 0-16 years, across all CKD stages, from low SES backgrounds, and/or residing in rural or remote areas, purposively sampled from five centers, participated in semi-structured interviews on accessing healthcare. Transcripts were analyzed thematically. ResultsFrom 32 interviews, 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), exasperated by organizational rigidity (frustrated by bureaucratic roadblocks, lack of access to specialist care in rural and remote 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). ConclusionsCaregivers of children with CKD from disadvantaged backgrounds feel disempowered and vulnerable when accessing care for their child. Strategies are needed to improve access to healthcare for families who are socioeconomically or geographically disadvantaged.