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Resilience, preparedness, and distress among family caregivers of patients with advanced cancer

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Abstract

Objective

Resilience has been proposed as a primary factor in how many family caregivers of patients with advanced cancer are able to resist psychological strain and perform effectively in the role while bearing a high load of caregiving tasks. To evaluate this hypothesis, we examined whether self-perceived resilience is associated with distress (anxiety and depressive symptoms), caregiver preparedness, and readiness for surrogate decision-making among a racially diverse sample of family caregivers of patients with newly diagnosed advanced cancer.

Methods

Secondary analysis of baseline data from two small-scale, pilot clinical trials that both recruited family caregivers of patients with newly diagnosed advanced cancer. Using multivariable linear regression, we analyzed relationships of resilience as a predictor of mood, caregiving preparedness, and readiness for surrogate decision-making, controlling for sociodemographics.

Results

Caregiver participants (N = 112) were mean 56 years of age and mostly female (76%), the patient’s spouse/partner (52%), and White (56%) or African-American/Black (43%). After controlling for demographics, standardized results indicated that higher resilience was relevantly associated with higher caregiver preparedness (beta = .46, p < .001), higher readiness for surrogate decision-making (beta = .20, p < .05) and lower anxiety (beta =  − .19, p < .05), and depressive symptoms (beta =  − .20, p < .05).

Conclusions

These results suggest that resilience may be critical to caregivers’ abilities to manage stress, be effective sources of support to patients, and feel ready to make future medical decisions on behalf of patients. Future work should explore and clinicians should consider whether resilience can be enhanced in cancer caregivers to optimize their well-being and ability to perform in the caregiving and surrogate decision-making roles.

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Data availability

The data that support the findings of this study are available from the corresponding author upon reasonable request.

Code availability

Not applicable.

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Acknowledgements

We thank all the clinicians and staff at the O’Neal Comprehensive Cancer Center at the University of Alabama at Birmingham for supporting this study. We also thank Julie Schach, James Mapson, Gjuana Cleveland, Tawny S. Martin, Diane Williams, Gail Averett, and Beth Ruf for assisting with the recruitment and data collection and Charis Smith for the study coordination. Most of all, we thank all the family caregivers and patients for contributing their time to this study.

Funding

The study was supported by funding from the National Institute of Nursing Research (R00NR015903) and the National Palliative Care Research Center (no grant #).

Author information

Authors and Affiliations

  1. School of Nursing, University of Alabama At Birmingham, Birmingham, AL, USA

    J. Nicholas Dionne-Odom, Andres Azuero, Richard A. Taylor, Rachel D. Wells, Bailey A. Hendricks, Avery C. Bechthold, Chinara K. Dosse, Sally Engler, Peggy McKie, Deborah Ejem & Marie A. Bakitas

  2. Comprehensive Transplant Institute, University of Alabama At Birmingham, Birmingham, AL, USA

    Rhiannon D. Reed

  3. Department of Psychology, University of Alabama, Tuscaloosa, AL, USA

    Erin R. Harrell

  4. Division of Hematology-Oncology, Department of Pediatrics, School of Medicine, University of Washington, Seattle, WA, USA

    Abby R. Rosenberg

  5. Cambia Palliative Care Center of Excellence, University of Washington, Seattle, WA, USA

    Abby R. Rosenberg

  6. Palliative Care and Resilience Lab, Seattle Children’s Research Institute, Seattle, WA, USA

    Abby R. Rosenberg

Authors
  1. J. Nicholas Dionne-Odom
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  2. Andres Azuero
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  3. Richard A. Taylor
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  4. Rachel D. Wells
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  10. Sally Engler
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  11. Peggy McKie
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  12. Deborah Ejem
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  13. Marie A. Bakitas
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  14. Abby R. Rosenberg
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Contributions

Drs. J. Nicholas Dionne-Odom, Andres Azuero, and Abby R. Rosenberg contributed to the study conception and design. Study oversight, material preparation, and data collection were performed by Drs. J. Nicholas Dionne-Odom, Andres Azuero, Richard Taylor, Sally Engler, Peggy McKie, and Marie Bakitas. Analyses were performed by Drs. J. Nicholas Dionne-Odom and Andres Azuero. The first draft of manuscript was written by Drs. J. Nicholas Dionne-Odom and Abby R. Rosenberg. All authors commented on prior versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to J. Nicholas Dionne-Odom.

Ethics declarations

Ethics approval and consent to participate

This study was approved by the University of Alabama at Birmingham Institutional Review Board (IRB Protocol Numbers: 300000979 and 300003601) and was performed in accordance with the ethical standards as laid down in the 1964 Declaration of Helsinki and its later amendments. Informed consent was obtained from all individual participants in this study.

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Not applicable.

Conflict of interest

The authors declare no competing interests.

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Dionne-Odom, J.N., Azuero, A., Taylor, R.A. et al. Resilience, preparedness, and distress among family caregivers of patients with advanced cancer. Support Care Cancer 29, 6913–6920 (2021). https://doi.org/10.1007/s00520-021-06265-y

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  • DOI: https://doi.org/10.1007/s00520-021-06265-y

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