Abstract
Purpose
Informal caregivers of individuals with cancer may experience substantial burdens. To develop interventions to support these caregivers, it is crucial to quantify and understand the domains of burdens potentially experienced by caregivers and factors contributing to each domain.
Methods
Using data from two national surveys, the National Survey of Caregiving (NSOC) linked to the National Health and Aging Trends Survey (NHATS), we identified all participants in the NHATS diagnosed with cancer who had a caregiver participating in the NSOC. Guided by a theoretical model, twenty-two items in the NSOC related to caregiver health, mood and outlook were included in factor analysis to develop scales capturing domains of burden. Multivariable regression analyses examined whether activities performed by caregivers and supports for caregivers were associated with these burden scales.
Results
Analysis of responses from 373 caregivers of cancer patients identified three scales: emotional burden; psychological burden; and relationship with the patient. Providing assistance managing medical care was associated with increased emotional and psychological burden, while assistance with non-medical issues increased psychological burden and worsened relationships with patients. Caregiver provision of direct patient care activities was also associated with increased burden but improved relationships with patients. Use of caregiver supports showed mixed associations with burden.
Conclusions
Using a nationally-representative sample of cancer patients and their caregivers and brief publicly-available survey questions, we present three scales addressing different aspects of caregiver burden that are responsive to caregiver activities and social supports. This may assist in developing and evaluating intervention to decrease caregiver burden.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
Spillman, B. C., Wolff, J., Freedman, V. A., & Kasper, J. D. (2014) Informal Caregiving for Older Americans: an analysis of the 2011 National Study of Caregiving. U.S. Department of Health and Human Services, Assistant Secretary for Planning and Evaluation, Office of Disability, Aging and Long-Term Care Policy. http://aspe.hhs.gov/daltcp/reports/2014/NHATS-IC.cfm. Accessed 22 July 2016.
Girgis, A., Lambert, S., & Lecathelinais, C. (2011). The supportive care needs survey for partners and caregivers of cancer survivors: development and psychometric evaluation. Psycho-oncology, 20(4), 387–393.
Hsu, T., Loscalzo, M., Ramani, R., Forman, S., Popplewell, L., Clark, K., Katheria, V., Feng, T., Strowbridge, R., Rinehart, R., Smith, D., Matthews, K., Dillehunt, J., & Hurria, A. (2014). Factors associated with high burden in caregivers of older adults with cancer. Cancer, 120(18), 2927–2935.
Hughes, S. L., Giobbie-Hurder, A., Weaver, F. M., Kubal, J. D., & Henderson, W. (1999). Relationship between caregiver burden and health-related quality of life. The Gerontologist, 39(5), 534–545.
Stenberg, U., Cvancarova, M., Ekstedt, M., Olsson, M., & Ruland, C. (2014). Family caregivers of cancer patients: perceived burden and symptoms during the early phases of cancer treatment. Social Work in Health Care, 53(3), 289–309.
Butow, P. N., Price, M. A., Bell, M. L., Webb, P. M., DeFazio, A., Australian Ovarian Cancer Study Group, Australian Ovarian Cancer Study Quality Of Life Study Investigators, & Friedlander M. (2014). Caring for women with ovarian cancer in the last year of life: a longitudinal study of caregiver quality of life, distress and unmet needs. Gynecologic Oncology, 132(3), 690–697.
Fried, T. R., Bradley, E. H., O’Leary, J. R., & Byers, A. L. (2005). Unmet desire for caregiver-patient communication and increased caregiver burden. Journal of the American Geriatric Society, 53(1), 59–65.
Litzelman, K., Skinner, H. G., Gangnon, R. E., Nieto, F. J., Malecki, K., & Witt, W. P. (2015). The relationship among caregiving characteristics, caregiver strain, and health-related quality of life: evidence from the Survey of the Health of Wisconsin. Quality of Life Research, 24(6), 1397–1406.
Burton, A. M., Sautter, J. M., Tulsky, J. A., Lindquist, J. H., Hays, J. C., Olsen, M. K., Zimmerman, S. I., & Steinhauser, K. E. (2012). Burden and well-being among a diverse sample of cancer, congestive heart failure, and chronic obstructive pulmonary disease caregivers. Journal of Pain and Symptom Management, 44(3), 410–420.
National Health and Aging Trends Study. Produced and distributed by http://www.nhats.org with funding from the National Institute on Aging (grant number NIA U01AG32947).
Kasper, J. D., Freedman, V. A., & Spillman, B. (2013). National Study of Caregiving (NSOC) User Guide. Assistant Secretary of Planning and Evaluation, DHHS. https://www.nhats.org/scripts/documents%5CNSOC_Round_1_User_Guide.pdf. Accessed 22 July 2016.
Klassen, A., Raina, P., Reineking, S., Dix, D., Pritchard, S., & O’Donnell, M. (2007). Developing a literature base to understand the caregiving experience of parents of children with cancer: a systematic review of factors related to parental health and well-being. Supportive Care in Cancer, 15, 807–818.
Bring, J. (1994). How to standardize regression coefficients. American Statistician, 48(3), 209–213.
Sklenarova, H., Krümpelmann, A., Haun, M. W., Friederich, H. C., Huber, J., Thomas, M., Winkler, E. C., Herzog, W., & Hartmann, M. (2015). When do we need to care about the caregiver? Supportive care needs, anxiety, and depression among informal caregivers of patients with cancer and cancer survivors. Cancer, 121, 1513–1519.
Wolff, J. L., Spillman, B. C., Freedman, V. A., & Kasper, J. D. (2016). A National Profile of Family and Unpaid Caregivers Who Assist Older Adults With Health Care Activities. JAMA Internal Medicine, 176(3), 372–379.
Hudson, P. (2004). Positive aspects and challenges associated with caring for a dying relative at home. International Journal of Palliative Nursing, 10, 58–65.
Sautter, J. M., Tulsky, J. A., Johnson, K. S., Olsen, M. K., Burton-Chase, A. M., Lindquist, J. H., Zimmerman, S., & Steinhauser, K. E. (2014). Caregiver experience during advanced chronic illness and last year of life. Journal of the American Geriatric Society, 62(6), 1082–1090.
Funding
No funding was received for this research.
Author information
Authors and Affiliations
Corresponding author
Electronic supplementary material
Below is the link to the electronic supplementary material.
Rights and permissions
About this article
Cite this article
Halpern, M.T., Fiero, M.H. & Bell, M.L. Impact of caregiver activities and social supports on multidimensional caregiver burden: analyses from nationally-representative surveys of cancer patients and their caregivers. Qual Life Res 26, 1587–1595 (2017). https://doi.org/10.1007/s11136-017-1505-9
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s11136-017-1505-9