The economic costs of unpaid cancer caregiving: A qualitative study

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.

To explore the direct and indirect costs experienced by unpaid caregivers of people with cancer receiving palliative care.

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.

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.

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.

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.