The economic costs of unpaid cancer caregiving: A qualitative study

Vollständiger Abstract

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Background: Unpaid caregivers play a crucial role in providing care for people with life-limiting illnesses such as cancer, yet their economic contributions are rarely recognised in economic evaluations, leaving caregivers to shoulder significant direct and indirect costs. Aim: To explore the direct and indirect costs experienced by unpaid caregivers of people with cancer receiving palliative care. Design: A qualitative study underpinned by a social constructivist framework, reported in line with COREQ and RTARG guidelines. Semi-structured interviews were conducted with unpaid caregivers to capture their lived experiences of caregiving costs. Thematic analysis was employed. Setting and Participants: The study was conducted at a single tertiary hospital in Melbourne, Australia. Eleven caregivers (43–87 years; mean 64 years) participated, including spouses, children, and parents of cancer patients who had accessed palliative care. Results: Caregivers reported a wide range of direct costs, including food, equipment, medications, transportation, insurance, and home modifications. Indirect costs emerged as equally burdensome, including time spent on personal care, care-coordination, employment disruption, and loss of leisure. These burdens frequently extended beyond the caregiving period, undermining economic security and long-term wellbeing. Conclusions: Caregiving imposes substantial and enduring direct and indirect costs that are rarely measured or recognised in decisions made around health systems. Findings highlight the need for a validated tool to capture the full cost of caregiving, to guide equitable comprehensive economic evaluation.