Perceptions of Support Among Older African American Cancer Survivors

Patients diagnosed with cancer are living longer. An estimated 11 million cancer survivors are alive in the United States today, and the five-year survival rate for some cancers is as high as 90% (American Cancer Society [ACS], 2010). Cancer survival rates for African Americans also are improving. Since the 1960s, the overall five-year survival rate for African Americans has more than doubled, from 27% to 58% (ACS, 2010). Although these figures show that survival disparities are diminishing, African Americans continue to suffer disproportionately from cancer as they continue to have more advanced disease (ACS, 2010), less access to timely treatments and quality care (Shavers & Brown, 2002), and more comorbidities (Bryant & Cerfolio, 2008). This cancer burden is compounded by a social environment in which social stigma and fatalistic attitudes toward cancer are prevalent (Phillips, Cohen, & Moses, 1999; Powe & Finnie, 2003) and in which healthcare institutions discriminate against the poor and minorities (Burgess, Ding, Hargreaves, van Ryn, & Phelan, 2008; Hausmann, Jeong, Bost, & Ibrahim, 2008). When a diagnosis of cancer is confirmed, African Americans experience a myriad of supportive and unsupportive responses from family and friends (Grange, Matsuyama, Ingram, Lyckholm, & Smith, 2008). These responses are critical because they may affect whether survivors are adherent to recommended treatment and affect their overall quality of life during the cancer experience. However, researchers have not fully explored older African American cancer survivors’ perceptions of their social support and the implications of these needs on their survivorship experiences. The purpose of this study was to explore the social support needs from the perspective of older African Americans diagnosed with and treated for cancer. African Americans’ involvement in mutual aid systems of giving and receiving support makes them an exemplar population for studying supportive relationships (Hamilton & Sandelowski, 2003). Their unique experiences in collectively pooling resources to meet their needs, coupled with their experiences of having the highest overall incidence and lowest survival rates of any racial or ethnic group (ACS, 2010) provide the opportunity to analyze the complexity of supportive social relationships among this population. The social resources available to African American cancer survivors usually come from an extended network of family and friends and from their religious involvement within their church. Within their social networks, African American cancer survivors give and receive emotional, instrumental, and informational support (Hamilton & Sandelowski, 2004; Morgan et al., 2005). They receive emotional support from knowing that others are “there for them” emotionally and physically (Hamilton & Sandelowski, 2004). Instrumental support assists African American survivors with finances, transportation, and maintenance of social roles in their homes, churches, and communities. Instrumental support also includes assistance to continue religious practices. Informational support assists African American cancer survivors in understanding and validating the information they receive from others about their cancer illness. Finally, social networks provide a way for these cancer survivors to give back through sharing what they have learned about cancer with others (Hamilton, 2001). The church is a second major source of support for African American cancer survivors. Reaching out to those in the community who are sick has long been a central mission of the church (Lincoln & Mamiya, 1995). In response to the disproportionate rates of cancer among African Americans, many churches have organized cancer support groups (Husaini et al., 2008) and provide formal support services such as assistance with personal care services and housekeeping and transportation to church, stores, and physician appointments (Walls & Zarit, 1991). African Americans actively involved in a church have higher numbers of physician visits, and this finding may be related to the validation that the church family provides (Manns, 1988). Clearly, the church community continues to function as a central institution to provide formal social support services to the “sick and shut in” members. Although research with African American cancer survivors has emphasized types of support that enhance survivorship experiences, situations clearly exist in which support is diminished or lacking. Qualitative studies suggest that African American cancer survivors fear being stigmatized and socially isolated in their families and communities (Grange et al., 2008). In addition, African American cancer survivors may be reluctant to communicate their needs for support in some situations (Jones et al., 2008). However, studies have not fully described ways in which the cancer experience affects social relationships and the support traditionally available from these relationships. In this article, the authors present findings on the factors that influenced African American cancer survivors’ needs for social support and how the survivors navigated within and outside of their networks to find ways in which their social support needs would be met.