American cancer group society support

Abstract: Informal and formal support networks are used by women to cope with the physical and psychological consequences of breast cancer. This study explored the support networks used by 43 southeastern United States African American women who participated in African American breast cancer support groups. Both qualitative and quantitative approaches were used. African American women were found to rely more on God for support than either family or friends. Health care professionals and Internet use was reported less often as a source of support among these women. We conclude that support group use does not decrease African American women's strong reliance on God as a source of support.

Key Words: African American Women, Breast Cancer, Support Groups, Social Support Networks

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Among African American women, approximately 20,000 new cases of breast cancer will occur and 5,700 will die from breast cancer in 2003 (American Cancer Society, 2003). Mortality rates are 28% higher for African American women with breast cancer than Caucasian women (Ghafoor et al., 2002). Due to the physical and emotional impact of breast cancer, women often develop an increased need for social support (Dirksen, 2000; Lugton, 1997; Samarel et al., 1998). Social support is often lacking and inadequate for African American women with breast cancer (Ashing-Giwa & Ganz, 1997; Moore, 2001).

Inadequate social support is associated with difficult adjustment to (Brady & Helgeson, 1999; Samarel et al., 1998) and poorer survival from breast cancer (Reynolds et al., 1994). Informal support networks of family and friends and formal support networks such as support groups assist women to cope with the challenges of breast cancer (Helgeson, Cohen, Schulz, & Yasko, 2000; Koopman et al., 2001; Stevens & Duttlinger, 1998). Informal support networks are found to be essential to the adjustment of breast cancer among African American women; however, it is not easy for African American women to communicate their diagnosis of breast cancer with family members or friends (Ashing-Giwa & Ganz, 1997; Henderson, Gore, Davis & Condon, in press; Wilmoth & Sanders, 2001).

In the few studies that compare the breast cancer experience among African American women and Caucasian women, differences are found in the type of support used by these ethnic/racial groups in coping with breast cancer (Bourjolly & Hirschman, 2001; Fogel, Albert, Schnabel, Ditkoff, & Neugut, 2003; Reynolds et al., 2000). Seeking social support is a coping strategy used most frequently by both African American women and Caucasian women to cope with breast cancer (Bourjolly & Hirschman, 2001; Fogel et al., 2003). However, when compared to Caucasian women with breast cancer, African American women report receiving more support from God than family members or friends (Bourjolly & Hirschman, 2001).

Studies show that African American women with breast cancer receive insufficient information and support from their health care professionals to help them through the breast cancer experience (Ashing-Giwa & Ganz, 1997; Henderson et al., in press). Minority women are found to use the Internet to obtain a sense of support from others to cope with breast cancer (Fogel et al., 2003). Support groups are also helpful to those coping with breast cancer (Helgeson et al., 2000; Samarel, Fawcett, & Tulman, 1997; Samarel et al., 1998). However, cancer support groups are used more often by Caucasians than African Americans (Barg & Gullatte, 2001; Guidry, Aday, Zhang, & Winn, 1997). African American women may choose to forego participation in traditional breast cancer support groups because they find these groups as lacking cultural sensitivity (Barg & Gullatte, 2001; Henderson et al., in press).

Our literature review of PsycInfo, CINAHL, CancerLit, and Medline did not show any studies of African American women participating specifically in African American centered breast cancer support groups. Using both qualitative and quantitative methods we study the support networks used by these African American women attending these culturally sensitive African American breast cancer support groups. We hypothesize that informal support networks of either family or friends will be used less frequently than support from God. Also, we hypothesize that support networks in the form of either professional help or Internet information use will be infrequently used to cope with breast cancer.

METHODS

Design, Sample, and Setting

We used focus group methodology to obtain our data. Participants included southeastern United States African American women above 30 years who were diagnosed with breast cancer and who participated in an African American breast cancer support group.

Data Collection and Analysis

Institutional review board approval and informed consent was obtained. Each participant was asked to discuss her support system(s) used to cope with breast cancer. Probes were used to obtain additional comments or clarify statements as needed from participants (Morgan & Krueger, 1998). The Ways of Coping Questionnaire (WCQ), a reliable and valid measure (Folkman & Lazarus, 1988) was completed by participants prior to focus group interviews. It is a Likert type scale ranging from 0 (does not apply or not used) to 4 (used a great deal). For the subscale of "seeking social support" our Cronbach alpha reliability was .74.

Four focus group interviews moderated by the first author were conducted with approximately 10-12 women in each group. African American female nurse research assistants were used to record observations. Also, focus groups were audio tape-recorded and transcribed. Qualitative data was collected until no new information or categories were obtained and the moderator felt data saturation was achieved (Speziale-Streubert & Carpenter, 2003).

Descriptive statistics for demographic data and for the six items for the subscale "seeking social support" were calculated. The kappa statistic was used to measure reliability for the types of social support networks among the two raters, who both had doctoral degrees. Following observation of excellent reliability for all categories, the first rater's data was used for all qualitative analyses. All statistical analyses were conducted with SPSS (Version 11.0, 2002).

FINDINGS

Sample Characteristics

Table 1 depicts demographic characteristics of the 43 participants. Participants' ages in years was M = 53.14 and SD = 8.23 years. The majority of participants was married (48.8%) and had at least a bachelor's degree or higher (48.9%). Personal income levels ranged from less than $10,000 to greater than $60,000 per year. Length of time since diagnosis in years was M = 4.08 and SD = 5.15 years. Surgery type included mastectomy (n = 22) and lumpectomy (n = 21). Table 2 shows excellent reliability for the presence of five categories of network support used by African American women consisting of God, family, friends, health care professionals, and Interact use.

Research Question One: What support networks are used by African American women who participate in African American breast cancer support groups to cope with breast cancer?

Besides participation in an African American breast cancer support group, African American women frequently used God, family, and friends for support. A few African American women stated that having someone physically present was important to help them cope with breast cancer. One woman stated, "I tell you when you go through this, you need people, you really do. If anybody thinks they can go through this by themselves, I know that God is with you, but to have somebody, a physical body with you is good."

Twenty-six of 43 women described only one support network assisting them to cope with breast cancer with a majority of them reporting God as their support network. For example one woman stated, "God just put His loving arms around me and they're still there." Twelve of 43 participants reported using a combination of support networks to cope with breast cancer. For example, one woman stated: "God was important, family, friends supportive people and especially our support group." There were 5 out of 43 women who did not discuss support networks outside of their support group.

As shown in Table 3, quantitative data showed that African American women talked to "someone" for a variety of reasons "relatives and friends" and also "professionals" about their situation. For each of these categories, at least over half of the women reported that they used it "a great deal". Although receiving support from others was found to be important to African American women, for the item stating "accepted sympathy and understanding from someone", only 32.6% used it "a great deal".

Research Question Two: Are African American women who participate in African American breast cancer support groups more likely to rely on God for support than either family or friends?