Racial, Ethnic, and Socioeconomic Health Disparities Among Cancer Survivors and Informal Caregivers Part 2

EMPLOYMENT, INSURANCE, AND FINANCE

The impact of cancer on survivors’ financial well-being, health coverage, and careers can persist for years after their treatment ends. Cancer treatment can lead to large medical debts and loss of income (Gordon, Scuffham, Hayes, & Newman, 2007). Cancer may cause survivors to exhaust savings, be unable to pay for basic necessities, borrow from relatives or banks, seek charity or public aid, or declare bankruptcy, burdens which disproportionately affect those with lower SES (Himmelstein, Thorne, Warren, & Woolhandler, 2009; USA Today, Henry J. Kaiser Family Foundation, & Harvard School of Public Health, 2006). Underserved African American women report that inability to pay medical bills, lack of insurance, long-term financial burdens, and nonmedical expenses are extremely stressful (Darby, Davis, Likes, & Bell, 2009). According to NHIS, non-White and low-income survivors are more likely to be uninsured or have public insurance compared to Whites and those with higher incomes (Sabatino, Coats, Uhler, Alley, & Pollack, 2006). While many survivors of local cancer return to normal employment within a year of diagnosis, those with more advanced disease or disability are more likely to have difficulty returning to work, and African Americans and lower-income survivors may be more likely to lose employment than Whites (Smith, Kaw, & Love-Ghaffari, 2010).

FAMILY MEMBERS AND INFORMAL CAREGIVERS

Cancer affects not only the individual with the disease, but also their family members and close friends, often for years after the diagnosis (Kim & Given, 2008). The impact is greatest among family members providing informal care to the person with cancer (i.e., caregivers). Cancer caregivers often provide a greater intensity of care over a shorter period than those caring for elderly family members, including those with dementia (Kim & Schulz, 2008). Cancer caregivers monitor treatment; manage symptoms; provide emotional, financial, and spiritual support; and assist with personal and instrumental care (Given, Given, & Kozachik, 2001). The strain of this role is associated with caregiver problems with social roles, restrictions of activities, family relationship strain, psychological distress, and diminished physical health (Given et al., 2001; Kim, Baker, Spillers, & Wellisch, 2006; Kim & Schulz, 2008; Nijboer et al., 1998; Weitzner, McMillan, & Jacobsen, 1999; Williamson, Shaffer, & Schulz, 1998). The negative impact of cancer caregiv-ing is offset to some degree by benefit finding (McCausland & Pakenham, 2003) and post-traumatic growth (Kim, Schulz, & Carver, 2007). A thorough review of cancer caregiving is provided by Kim and Given (2008). The review concluded that the psychological, social, and physical impact on caregivers’ quality of life (QOL) is significant throughout the trajectory of the illness, though greatest around the time of initial treatment. One major gap identified was a lack of research on non-White cancer caregivers. Research on caregivers of non-cancer diseases finds that African American, and Hispanics are more likely to be single, younger, have less education, have less income, and provide high-intensity care when compared to Whites (National Alliance in Caregiving & AARP, 2009).

Most existing cancer caregiving research investigates spousal caregivers. As a result, little is known about other types of family caregivers. This limitation is especially relevant for non-Whites, who often received care from offspring, parents, siblings, and friends. As the age and diversity of the U.S. population grows, the proportion of older individuals cared for by spouses is expected to decrease and the proportion cared for by adult children to increase (Emanuel et al., 1999; Given, Given, & Stommel, 1994). This trend is likely to have the greatest impact on adult daughters, because caregiv-ing falls disproportionately to women (National Alliance in Caregiving & AARP, 2009). The few existing studies suggest that adult offspring caregivers report higher levels of caregiving stress than spouses or other caregivers (Chumbler, Grimm, Cody, & Beck, 2003). These results are attributed, in part, to the multiple, competing roles that offspring caregivers must balance— employee, spouse, and parent— with caregiving duties.

Cancer also places a financial and economic burden on the family. A few studies have documented family caregivers’ loss of employment benefits and health insurance due to their involvement with cancer care (Blank, Clark, Longman, & Atwood, 1989; Jansen, Halliburton, Dibble, & Dodd, 1993; Longo, Fitch, Deber, & Williams, 2006). One study demonstrates that the economic effect of cancer on the family extends beyond the time of diagnosis and treatment (Yabroff & Kim, 2009). Families often assist in managing survivors’ late effects, which may carry a financial burden. Further, the survivor’s disability may have decreased family income. Together, these factors may have a significant financial impact on the family, particularly among those in lower-SES groups.

Health behaviors may be particularly important to those with a family history of cancer since, for a number of cancers, first-degree relatives are at increased risk. Family members’ direct experience with cancer in a loved one should make health behaviors especially salient to them. Although some studies have shown improved health behaviors among those with a family member with cancer (Son et al., 2010), caregivers may neglect their own health, including good nutrition, exercise, and adherence to cancer screening guidelines (Beach, Schulz, Yee, & Jackson, 2000). Health behaviors may be particularly important for non-White caregivers who belong to groups with higher cancer mortality rates.

CONCLUSION

The description of racial/ethnic and SES disparities among cancer survivors is new, with early evidence suggesting that health disparities exist in survivor HRQOL, follow-up care, health behavior, and the financial/career outcomes (for a summary of key findings, see Table 5.1). The reader should note that the existence of racial/ethnic and SES disparities remains practically unexplored in many areas of survivorship research (e.g., fatigue, sexual functioning, and impact on informal caregivers). These results suggest the need for more research to expand understanding of disparities among racial/ethnic and low-income survivors and to develop interventions to address the disparities thus uncovered.

Both descriptive and intervention research are best when informed by theoretical models that describe relevant person, system, and environmental factors and how they impact health outcomes. Conceptual models for explaining HRQOL and late effects disparities must account for potential "ethnic variability in the associations among the individual- and systemic-level" variables that influence HRQOL (Ashing-Giwa & Lim, 2010). These models can build on the relatively well-developed disparities research in self-reported health, cancer recurrence, and pain. Neighborhood factors have been shown to play a role in survivor self-reported health disparities. Access to care, stage of disease at diagnosis, and treatment received appear to explain racial/ethnic recurrence disparities. Pain disparities research describes how specific barriers to pain control vary by group, including a number of system and environmental factors.

These theories should account for other key factors. Too often, studies have a singular focus on racial/ethnic disparities, while ignoring SES disparities or the role of SES as a potential causal factor. The cancer experience appears to have both positive and negative influences on health beliefs (e.g., cancer worry, fatalism) and behaviors. Age is another important factor, because survivors tend to be older and deficits associated with normal aging can be misattributed to cancer. Few studies to date have addressed the degree to which racial/ethnic disparities among survivors are a result of cancer diagnosis and treatment, as opposed to simply reflecting similar disparities in those who are cancer free. The question remains: To what degree are disparities among survivors attributable to the cancer experience?

TABLE 5.1 Key Points

Research on survivor disparities will need to employ techniques to overcome inherent challenges. Oversampling of non-White and low-SES survivors is needed to overcome their relative scarcity and the lower likelihood that they will respond to surveys (Smith et al., 2007). Use of appropriate, culturally sensitive research methods and materials will increase response rates and the validity of results (Hahn et al., 2010). This includes accounting for differences in literacy level and native language as well as validation of measurement scales for specific ethnic groups. Furthermore, consideration must be given to differences in cultural norms, attitudes, and beliefs about cancer.

In conclusion, cancer survivors are a large and growing group with unique health issues. Early evidence suggests that racial/ethnic and SES disparities exist among survivors, though many areas remain under-studied. Culturally appropriate interventions based on theoretical models that take into account the important cultural, environmental, and health system factors that contribute to these disparities are needed.