Abstract
Purpose
Family caregivers (FCs) are crucial resources in caring for cancer patients at home. The aim of this investigation was (1) to measure the prevalence of unmet needs reported by FCs of cancer patients in home palliative care, and (2) to investigate whether their needs change as their socio-demographic characteristics and the patients’ functional abilities change.
Methods
FCs completed a battery of self-report questionnaires, including the Cancer Caregiving Tasks, Consequences, and Needs (CaTCoN).
Results
Data were collected from 251 FCs (74 men and 177 women, mean age 58.5 ± 14.2 years). Most of the participants experienced a substantial caregiving workload related to practical help (89.8%), provided some or a lot of personal care (73.1%), and psychological support (67.7%) to patients. More than half of the FCs reported that the patient’s disease caused them negative physical effects (62.7%). Emotional, psychosocial, and psychological needs were referred. Some FCs reported that the patient’s disease caused them a lot of stress (57.3%) and that they did not have enough time for friends/acquaintances (69.5%) and family (55.7%). The need to see a psychologist also emerged (44.0%). Age, caregiving duration, and patients’ functional status correlated with FCs’ unmet needs. Women reported more negative social, physical, and psychological consequences and a more frequent need to talk to a psychologist.
Conclusion
The analysis demonstrated that cancer caregiving is burdensome. The results can guide the development and implementation of tailored programs or support policies so that FCs can provide appropriate care to patients while preserving their own well-being.
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Data Availability
The datasets generated during and/or analyzed during the current study are available from the corresponding author on reasonable request.
Code availability
Not applicable.
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Acknowledgements
We would like to thank all the family caregivers that participated in the study. This work was possible only because they gave their time and shared their experiences with us.
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All the authors contributed to the study conception and design. Material preparation, data collection, and analysis were performed by Zavagli Veronica, Raccichini Melania, Ostan Rita, Ercolani Giacomo, and Franchini Luca. The first draft of the manuscript was written by Zavagli Veronica, and all the authors commented on previous versions of the manuscript. All the authors read and approved the final manuscript.
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Approval was obtained from the ethics committee of Area Vasta Emilia Centro of Emilia-Romagna Region (CE-AVEC). All procedures were performed in accordance with the 1964 Helsinki Declaration and its later amendments.
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Informed written consent was obtained from all participants included in the study.
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Zavagli, V., Raccichini, M., Ostan, R. et al. Identifying the prevalence of unmet supportive care needs among family caregivers of cancer patients: an Italian investigation on home palliative care setting. Support Care Cancer 30, 3451–3461 (2022). https://doi.org/10.1007/s00520-021-06655-2
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DOI: https://doi.org/10.1007/s00520-021-06655-2