Abstract
Purpose
To identify demographic and caregiving characteristics associated with caregivers’ unmet needs and to examine associations of caregivers’ unmet needs with their quality of life at 2 years and 5 years since their patients’ initial diagnosis.
Methods
Family cancer caregivers completed prospective longitudinal surveys at 2 years (T1) and 5 years (T2) post diagnosis. Demographic and caregiving characteristics were measured at T1. Unmet needs and quality of life were measured at T1 and T2.
Results
Younger and spousal caregivers reported greater unmet needs (B > 2.03, p < .05). Independent of demographic characteristics, caregivers’ perception that providing care to their relative with cancer was overwhelming was consistently associated with unfulfillment of their needs in various domains, concurrently and prospectively (B > 2.50, p < .05), across the long-term survivorship phases.
Conclusions
Findings highlight the contribution of earlier subjective caregiving stress to family caregivers’ needs not being met both currently and years later, which, in turn, related to poorer quality of life across different family caregivership trajectories. Findings suggest identifying at-risk subgroups of family caregivers based on demographics and assessing caregiving stress as a priority in psycho-oncology research and clinical practices.
Implications for Cancer Survivors
Family caregivers’ quality of life is affected by cancer survivors’ illness trajectory many years after the initial cancer diagnosis, so are the caregivers’ needs. Cancer survivorship care plan should take careful consideration of the nuanced long-term contributions of caregivers’ unmet needs to their specific aspects of quality of life.
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Acknowledgments
The authors thank all the families who participated in this project. The first author dedicates this research to the memory of Heekyoung Kim.
Funding
This study was funded by the American Cancer Society National Home Office, intramural research. Writing of this manuscript was supported by the National Institute of Nursing Research (R01NR016838) to the first author.
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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.
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Kim, Y., Carver, C.S. Unmet needs of family cancer caregivers predict quality of life in long-term cancer survivorship. J Cancer Surviv 13, 749–758 (2019). https://doi.org/10.1007/s11764-019-00794-6
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DOI: https://doi.org/10.1007/s11764-019-00794-6