Objectives/Purpose
Informal caregivers disproportionately carry the burden of caring for patients with cancer. Current economic evaluations of health services and interventions are based on the benefits to the formal healthcare system, while the financial impact on informal caregivers is overlooked. This qualitative study aimed to explore the direct and indirect costs borne by informal caregivers of cancer patients in Australia to gain a comprehensive understanding of the economic burden they face.
Sample and Setting
Semi-structured interviews were conducted with 11 current and former informal caregivers for cancer patients purposively sampled from two metropolitan hospitals in Australia.
Procedures
Caregivers were recruited through clinical staff and cancer support services. Interviews explored their experiences with out-of-pocket expenses and indirect costs related to their caregiving responsibilities. Interviews were audio-recorded, transcribed verbatim, and analysed using thematic analysis to identify key themes.
Results
Caregivers reported a wide range of direct costs, including expenses for food, home modifications, equipment, medications, transport, and insurance premiums. Indirect costs stemmed from time spent on caregiving tasks such as medication management, personal care, attending appointments, and providing emotional support. Many caregivers had to reduce work hours or leave employment, resulting in lost income. The financial impact was exacerbated by factors like geographical distance from treatment centres, diagnosis and the stage of disease. Caregivers expressed concerns about the long-term sustainability of their financial situation.
Conclusion and Clinical Implications
This study highlights the breath of the economic burden faced by informal caregivers of cancer patients in Australia. The findings show there is a need for greater understanding of the costs borne by caregivers, in order to connect them with appropriate support to alleviate the strain associated with the role. Policymakers need to consider the true societal cost of informal caregiving when evaluating healthcare costs and interventions.