Meredith Medway1, Allison Tong2, Jonathan C Craig2, Siah Kim3, Fiona Mackie4, Steven McTaggart5, Amanda Walker6, Germaine Wong2. 1. Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, Australia. Electronic address: meredith.medway@sydney.edu.au. 2. Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, Australia. 3. Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, Australia. 4. Department of Nephrology, Sydney Children's Hospital, Randwick, NSW, Australia. 5. Department of Nephrology, Royal Children's Hospital, Brisbane, QLD, Australia. 6. Department of Nephrology, Royal Children's Hospital, Melbourne, VIC, Australia.
Abstract
BACKGROUND: The economic consequences of chronic kidney disease (CKD) are severe for adult patients and their households, but the out-of-pocket expenses and economic burden of CKD and how this affects the caregivers of children with kidney disease are unclear. This study aims to describe parental perspectives on the financial impact of caring for a child with CKD. STUDY DESIGN: Face-to-face semistructured interviews. SETTING & PARTICIPANTS: Parents of children with CKD from 3 pediatric nephrology centers in Australia. ANALYTICAL APPROACH: Transcripts were analyzed thematically. RESULTS: 27 parents of 26 children participated. We identified 5 themes: loss of freedom and control (prioritizing care, limiting occupational opportunities, and appreciating socioeconomic advantage), burden of sole responsibility (inability to rely on others, lack of respite, increased separation of family roles, and self-reliance), adapting for survival (vigilant budgeting, redefining normality and expectations, rechanneling resources to basic needs, and negotiating work flexibility), instability of circumstances (depleted capacity to work, unpredictability of child's health, burden of travel-related costs, imposition of debt, and domestic upheaval), and struggle in seeking support ("falling through the cracks" and unmet information needs). LIMITATIONS: Few participants were fathers (n=5), and results may not be transferable to non-English-speaking caregivers because these participants were excluded. CONCLUSIONS: Parents focused their resources and attention on meeting the complex needs of their child. Inability to sustain employment due to focus on their child's care and both medical and nonmedical expenses were major contributors to the financial impact, with financial stress compounded by difficulties accessing government support. As a result, parents experienced profound financial and social instability and physical and psychological fatigue and exercised extreme financial vigilance. Increased access to respite and domestic support and financial and psychosocial interventions are suggested to minimize the financial impact of caring for a child with CKD, which in turn may lead to better care, quality of life, and health outcomes for children with CKD and their families.
BACKGROUND: The economic consequences of chronic kidney disease (CKD) are severe for adult patients and their households, but the out-of-pocket expenses and economic burden of CKD and how this affects the caregivers of children with kidney disease are unclear. This study aims to describe parental perspectives on the financial impact of caring for a child with CKD. STUDY DESIGN: Face-to-face semistructured interviews. SETTING & PARTICIPANTS: Parents of children with CKD from 3 pediatric nephrology centers in Australia. ANALYTICAL APPROACH: Transcripts were analyzed thematically. RESULTS: 27 parents of 26 children participated. We identified 5 themes: loss of freedom and control (prioritizing care, limiting occupational opportunities, and appreciating socioeconomic advantage), burden of sole responsibility (inability to rely on others, lack of respite, increased separation of family roles, and self-reliance), adapting for survival (vigilant budgeting, redefining normality and expectations, rechanneling resources to basic needs, and negotiating work flexibility), instability of circumstances (depleted capacity to work, unpredictability of child's health, burden of travel-related costs, imposition of debt, and domestic upheaval), and struggle in seeking support ("falling through the cracks" and unmet information needs). LIMITATIONS: Few participants were fathers (n=5), and results may not be transferable to non-English-speaking caregivers because these participants were excluded. CONCLUSIONS: Parents focused their resources and attention on meeting the complex needs of their child. Inability to sustain employment due to focus on their child's care and both medical and nonmedical expenses were major contributors to the financial impact, with financial stress compounded by difficulties accessing government support. As a result, parents experienced profound financial and social instability and physical and psychological fatigue and exercised extreme financial vigilance. Increased access to respite and domestic support and financial and psychosocial interventions are suggested to minimize the financial impact of caring for a child with CKD, which in turn may lead to better care, quality of life, and health outcomes for children with CKD and their families.
Keywords:
Australia; Pediatric; caregiving; chronic kidney disease (CKD); economic; end-stage kidney disease (ESKD); financial; health care expenditures; medical costs; qualitative research; quality of life (QoL); socioeconomic status (SES); workforce participation
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