Informal caregivers, such as partners, children and other family members as well as close friends, provide essential support to cancer patients. Following diagnosis and the first phases of the disease, these individuals may offer practical help by accompanying the patient during doctor visits, care and, provide psychological support to help the ‘new’ patient cope with uncertainty and fear. In more advanced phases of the disease, caregivers may be called upon to provide care and emotional support.[1]
While the actual burden of cancer is considerable across all cultures, some experts believe that care-giving is not necessarily influenced by race and ethnicity. However, a recent study, funded by grants from the National Cancer Institute and presented at the 11th AACR Conference on The Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved, held November 2 – 5, 2018, in the Sheraton New Orleans Hotel in New Orleans, Louisiana, USA, shows that African-Americans caring for loved ones with cancer were less likely than their white peers to report distress and depression, possibly due to stronger social support.
Importance
According to the National Alliance for Caregiving (NAC),? a leader in conducting policy analysis and tracking legislation dealing with family care-giving issues and initiatives that focus on family caregivers, an estimated 4 million people are caring for an adult cancer patient. This translates to roughly 8% of all care-givers in the United States. The majority of these caregivers are helping patients in the first 2 years after diagnosis or when an individual cancer patient is declining and dying of cancer,? confirming a bimodal distribution of caregiving (ie, care at diagnosis/treatment, care at end of life). [1]
The finding that African-American caregivers reported lower levels of caregiver burden and depression compared to white caregivers may help us to develop more effective caregiver supports
Large role
?Informal caregivers, generally family members or friends, play an increasingly large role in the care of cancer patients,? said the study?s co-lead author, Maria Thomson, Ph.D, assistant professor in the Department of Health Behavior and Policy at Virginia Commonwealth University in Richmond.
?We do not have a good understanding of exactly how burdensome this is, how it affects caregiver health and economic outcomes over time, or which aspects caregivers view as particularly burdensome,? she continued.
Comparison
To compare perceived burden, depression, and distress between African-American and white informal caregivers, Thomson and colleagues enrolled 90 caregivers, 44 African-American and 46 white, all of whom were providing end-of-life care to cancer patients. They surveyed the caregivers on demographics, preparedness for care-giving, and distress, and rated them on the CES-D scale for depression and the Zarit Burden scale for caregiver burden..
The African-American caregivers reported significantly lower distress, depression, and caregiver burden. Overall, older caregivers reported lower levels of distress than younger caregivers.
Thomson said that preparation for the care-giving role was a major factor in the respondents? mental and emotional well-being. She said caregivers of any race who felt they had received adequate information, training, and support regarding the caregiving role were significantly less likely to report distress.
Faith and Religion
Religiosity also played a role, with African-American caregivers more likely to identify church or faith-based groups as a source of social support compared with white caregivers.
Faith may give a suffering person but also the caregiver a framework for finding meaning and perspective through a source greater than self.
Various studies have shown that? cancer patients and their caregivers often rely on spiritual and religious beliefs to cope with the illness.? They are generally more likely to use an active coping style in which they accept their illness and try to deal with it in a positive and purposeful way. In turn, this better coping mechanism may give a sense of control over feelings of helplessness and fear, leading to a positive effect on the quality of life of cancer patients and caregivers. [2][3]
The authors said this finding could help inform future interventions to support caregivers.
?Finding that African-American caregivers reported lower levels of caregiver burden and depression, as compared to white caregivers, is important for understanding how to develop effective caregiver supports,? said first author Laura A. Siminoff, Ph.D, dean of the College of Public Health at Temple University in Philadelphia.
Sociocultural differences
?This illustrates that there are likely to be important sociocultural differences in the ways in which caregivers experience and attach meaning to care-giving, where they prefer to seek support, and the types of support that would be most helpful,? she added.
The authors cautioned that this study represents preliminary findings from a larger, ongoing study. They anticipate that the broader study will provide more complete information on how caregivers fare over time and which factors affect their emotional and mental health.
Thomson and Siminoff added that racial and ethnic minorities are underrepresented in existing research on cancer caregivers, and future research should aim for more diverse, representative samples.
References
[1] Romito F, Goldzweig G, Cormio C, Hagedoorn M, Andersen BL. Informal caregiving for cancer patients.Cancer. 2013 Jun 1;119 Suppl 11:2160-9. doi: 10.1002/cncr.28057.
[2] Cancer Patients and Caregivers Benefit from Religious Faith. Cancer Horizon. Online. Last accesses November 4, 2018.
[3] Weaver AJ, Flannelly KJ. The role of religion/spirituality for cancer patients and their caregivers.South Med J. 2004 Dec;97(12):1210-4.
Last Editorial Review: November 4, 2018
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