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Where you begin is not necessarily where you end: the mental and physical health trajectories of cancer caregivers over time

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Abstract

Purpose

Cancer caregiving, a critical component in the cancer-care model, has deleterious effects on the caregiver’s physical and mental health. The degree to which these negative effects are uniformly experienced by caregivers is unclear; effects may be exacerbated at the end of life when caregiving is intensified. Not all caregivers have the support of an additional involved support person (secondary caregiver). The impact of the secondary caregiver’s absence on the primary caregiver’s well-being is understudied.

Methods

Terminal cancer patient-caregiver dyads (n = 223) were recruited from oncology clinics and followed for six months or until patient death. Longitudinal latent growth models were used to characterize the heterogeneity of caregiver physical health and depressive symptoms; characteristics associated with these trajectories are examined.

Results

Caregivers were majority female (74%), white (55%) and patient spouses (60%). Two physical health (moderate, stable; initially good, declining) and two depressive symptom (moderate, stable; high, increasing) trajectories were identified. Declining physical health was more likely among caregivers who were healthiest at baseline, had higher levels of education, lower subjective burden, fewer depressive symptoms, cared for patients with fewer functional limitations and reported fewer caregiving tasks rendered by a secondary caregiver. Those with increasing depressive symptoms were more likely to be white, patient’s wife, have higher subjective caregiver burden, lower physical health, and care for a patient with greater functional limitations.

Conclusions

Decreasing physical health was evident among caregivers who were initially healthier and reported less assistance from secondary caregivers. Increasing depression was seen in white, female spouses with higher subjective burden. Sample heterogeneity revealed hidden groups unexpectedly at risk in the primary cancer caregiver role to which the oncology care team should be alert.

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Data availability

Dataset available upon request.

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Acknowledgements

We thank the caregiver and patient participants. We thank Dr. Robin Matsuyama for her leadership in developing this grant and obtaining funding with Dr. Laura Siminoff prior to her retirement and Diana Litsas for technical assistance in preparing the manuscript.

Funding

This work was supported by the National Cancer Institute (R01CA196576). Authors LAS and MT, respectively, have received research support from NCI.

Author information

Authors and Affiliations

  1. College of Public Health, Social and Behavioral Sciences, Temple University, 1700 N Broad St, 4th fl Suite 417, Philadelphia, PA, 19122, USA

    Maureen Wilson Genderson & Laura A. Siminoff

  2. Department of Health Behavior and Policy, School of Medicine, Virginia Commonwealth University, 830 East Main Street Richmond, Richmond, VA, 23219, USA

    Maria D. Thomson

Authors
  1. Maureen Wilson Genderson
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  2. Maria D. Thomson
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  3. Laura A. Siminoff
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Contributions

Laura A. Siminoff – participated in research design and performance, data analysis and writing the manuscript; Maria D. Thomson – participated in research design and performance and writing the manuscript; Maureen Wilson-Genderson – participated in data analysis and writing the manuscript.

Corresponding author

Correspondence to Laura A. Siminoff.

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Ethics approval

The study was approved by the Temple University and Virginia Commonwealth University institutional review boards for human subjects (IRB #22776), in accordance with the ethical principles of respect for persons, beneficence, and justice as discussed in The Belmont Report.

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Informed consent and consent to publish was obtained from institutional review board, IRB #22776.

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Genderson, M.W., Thomson, M.D. & Siminoff, L.A. Where you begin is not necessarily where you end: the mental and physical health trajectories of cancer caregivers over time. Support Care Cancer 32, 233 (2024). https://doi.org/10.1007/s00520-024-08437-y

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