Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2021 Aug;15(4):630-640.
doi: 10.1007/s11764-020-00956-x. Epub 2020 Oct 17.

Caregiving burden among informal caregivers of African American cancer survivors

K Schwartz  1   2 , J Beebe-Dimmer  3   4 , T A Hastert  3   4 , J J Ruterbusch  3 , J Mantey  3   5 , F Harper  3   4   6 , H Thompson  3   4   6 , S Pandolfi  3 , A G Schwartz  3   4
Affiliations

Caregiving burden among informal caregivers of African American cancer survivors

K Schwartz et al. J Cancer Surviv. 2021 Aug.

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.

Keywords: African American; Cancer survivor; Caregiver burden; Informal caregiver.

PubMed Disclaimer

Conflict of interest statement

Conflicts of Interest: The authors have no financial or professional conflicts of interest to declare.

Figures

Figure 1.
Figure 1.
Percentage of caregivers that reported help with ADLa and IADLa by caregiver burden group
See this image and copyright information in PMC

References

    1. Office of Cancer Survivorship, National Cancer Institute Division of Cancer Control and Population Sciences. Found at https://cancercontrol.cancer.gov/ocs/statistics/index.html. Accessed May 5, 2020.
    1. American Cancer Society Cancer Facts and Figures 2020. Atlanta: American Cancer Society; 2020. - PMC - PubMed
    1. Brédart A, Kop JL, Beaudeau A, et al. Quality of care in the oncology outpatient setting from patients’ perspective: A systematic review of questionnaires’ content and psychometric performance. Psycho-Oncology 2014;24:382–394. - PubMed
    1. Alfano CM, Leach CR, Smith TG, et al. Equitably improving outcomes for cancer survivors and supporting caregivers: A blueprint for care delivery, research education and policy. CA Cancer J Clin 2019;69:35–49. - PubMed
    1. National Alliance for Caregiving and the AARP Public Policy Institute. Caregiving in the U.S. 2020 Full Report and Appendix B. https://www.caregiving.org/caregiving-in-the-us-2020/. Accessed June 20, 2020.

Publication types