Objectives/Purpose
Informal caregivers play a vital role in the care of people with cancer receiving palliative care, a role that can result in significant financial burden. Currently, economic evaluation places substantial emphasis of the financial burden upon healthcare systems, while the impact on informal caregivers is often overlooked. No standardised instrument currently exists to understand the financial impact of informal caregiving for cancer patients at the end-of-life. To fill this gap, we have co-designed an economic assessment tool that comprehensively captures the financial, time, and opportunity costs incurred by caregivers for cancer patients receiving palliative or end-of-life care. The purpose of this study was to pilot and assess the feasibility, acceptability, and face validity of this tool.
Sample and Setting
The Cost of Cancer Caregiving Questionnaire (CCC) was piloted with twelve informal caregivers (seven current, four bereaved, one former) via video and phone interviews.
Procedures
Using cognitive-interviewing techniques, participants were asked to 'think-aloud' as they filled out the CCC questionnaire. The tool was iteratively refined based on interview findings to assess its feasibility, acceptability, and face validity.
Results
Findings resulted in iterative refining of the CCC to achieve a feasible, acceptable, and face-valid questionnaire. Changes included adjustment of reference periods and clarification to isolate caregiving experiences. Feasible domains include patient demographics, caregiver demographics, work status, financial benefits, and healthcare utilisation. Further adaptations were made to out-of-pocket expenses and caregiver time domains. Participants readily engaged with the CCC, highlighting the importance they placed on the issues raised.
Conclusion and Clinical Implications
The CCC tool provides valuable insights into the contributions of informal caregivers in caring for cancer patients receiving palliative care and can shape how the healthcare system values and supports their vital role as caregivers.