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Caregiving burden among informal caregivers of African American cancer survivors

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Abstract

Purpose

Relatively little is known about caregivers of African American cancer survivors. Our goal was to identify the extent of burden among this group of caregivers.

Methods

Responses from 560 informal caregivers of African American participants of the Research on Cancer Survivors (ROCS) study in Detroit, MI, were analyzed including demographics, assistance provided including activities of daily living (ADLs) and instrumental activities of daily living (IADLs), time spent in caregiving, and caregiver burden (CGB). We assessed relationships between CGB and demographic variables, ADLs/IADLs, and level of care. Multivariable logistic regression determined which ADLs and IADLs were associated with high CGB.

Results

Over 75% of caregivers were female and 97% identified as African American. Mean age was 52.6 years. Fifty-six percent were employed outside the home, and 90% were related to the survivor. Caregivers averaged 35.7 h/week providing care, assisting with on average 2.8 ADLs and 5.0 IADLs. Despite the many hours and activities reported, no caregivers rated CGB as severe; only 4% rated it moderate to severe. ADLs associated with the top quartile of CGB were feeding and toileting; IADLs were finances, telephoning, housework, and medications.

Conclusions

Caregivers for African American cancer survivors provide many hours of care, yet most describe their CGB as low. Although ADL assistance is often available through the healthcare system, assistance with IADLs presents an opportunity to lessen the burden for these caregivers and their care recipients.

Implications for Cancer Survivors

African American cancer survivors receive much care from informal family caregivers, who assist with multiple ADLs and IADLs. Formal IADL assistance programs, similar to those available for ADLs, would benefit both survivors and caregivers.

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Data availability

Raw data, anonymized study databases, and analytical files are available for review upon request.

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Funding

This study is supported by the National Institutes of Health Grants/Contracts: U01CA199240 and HHSN261261201300011I.

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Author notes

  1. J. Mantey

    Present address: Department of Internal Medicine, University of Michigan School of Medicine, Ann Arbor, MI, USA

Authors and Affiliations

  1. Department of Family Medicine and Public Health Sciences, Wayne State University School of Medicine, Detroit, MI, USA

    K. Schwartz

  2. Population Studies and Disparities Research Program, Karmanos Cancer Institute, Wayne State University, 87 E. Canfield, Detroit, MI, 48201, USA

    K. Schwartz, J. Beebe-Dimmer, T. A. Hastert, J. J. Ruterbusch, J. Mantey, F. Harper, H. Thompson, S. Pandolfi & A. G. Schwartz

  3. Department of Oncology, Wayne State University School of Medicine, Detroit, MI, USA

    J. Beebe-Dimmer, T. A. Hastert, F. Harper, H. Thompson & A. G. Schwartz

  4. Office of Cancer Health and Community Engagement, Karmanos Cancer Institute, Wayne State University, Detroit, MI, USA

    F. Harper & H. Thompson

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Contributions

All authors contributed to the study conception and design. Material preparation, data collection, and analysis were performed by Julie Ruterbusch, Julia Mantey, and Stephanie Pandolfi. The first draft of the manuscript was written by Kendra Schwartz. All authors commented on drafts of the manuscript and read and approved the final manuscript.

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Correspondence to K. Schwartz.

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This study was approved by the Wayne State University Institutional Review Board.

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The authors declare that they have no conflicts of interest.

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Schwartz, K., Beebe-Dimmer, J., Hastert, T.A. et al. Caregiving burden among informal caregivers of African American cancer survivors. J Cancer Surviv 15, 630–640 (2021). https://doi.org/10.1007/s11764-020-00956-x

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  • DOI: https://doi.org/10.1007/s11764-020-00956-x

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