Background Family caregivers play an important role in the care of patients receiving palliative care, yet little is known about the financial impact of family caregiving in this context. A lack of existing validated tools for collecting data on the costs of family caregiving in palliative care has resulted in a weak and limited evidence base. The aim of the study was to describe the development and initial piloting of a new survey tool which captures data on the costs of family caregiving in palliative care: the Costs of Family Caregiving (COFAC) questionnaire.
Methods Development and piloting of the COFAC questionnaire involved 2 phases: (1) questionnaire development based on published evidence and cognitive interviews with service users; and (2) validity testing involving expert review and piloting with bereaved caregivers.
Results Questionnaire content was generated from previously published research and related to work-related costs, carer time costs and out-of-pocket expenses. 2 group cognitive interviews with 15 service users refined content of the draft questionnaire. Face validity was established through expert review with 9 academics and clinicians. Piloting with 8 bereaved caregivers established acceptability and feasibility of administration.
Conclusions The COFAC tool has been shown to be valid, acceptable to bereaved caregivers and feasible to administer. The COFAC questionnaire is recommended for economic research in palliative care which seeks to capture data from a broad societal perspective which includes family caregiver costs.
- family caregivers
- palliative care
- economic cost
- financial cost
- costs and cost analysis
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Contributors CG collected data and wrote the first draft; CM and CH revised subsequent drafts.
Funding The study was funded by a University of Sheffield Vice-Chancellors Fellowship. CM is supported by the EU Joint Programme—Neurodegenerative Disease Research (JPND) project.
Competing interests None declared.
Ethics approval Ethical approval was granted by the University of Sheffield School of Nursing and Midwifery ethical review committee.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement Data are available from the authors on request.