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Research Grants Awarded
Cultural Diversity and Breast Cancer Support Groups
Breast Cancer Disparities
Illness support groups offer many benefits for improving the survivorship experience, yet they remain underutilized, particularly among ethnic minority populations. This project investigates cultural models of illness and survivorship within breast cancer support groups that target African American and Latina women, and assesses the degree of similarity and difference in these models when they are compared with those espoused by mainstream support groups attended primarily by white, middle-class women. Cultural models are cognitive schema that represent shared understandings of illness and recovery. The study has three main objectives: (1) it will describe similarities and differences in cultural models of breast cancer, recovery and support group participation across ethnically distinct populations; (2) it will clarify the impact of support group membership on individual survivorship experience; and (3) the results will help to prepare health care providers to better counsel and guide patients through the recovery process, including referral to appropriate support resources. Results of this study will help define a shared model for the perceived ?successful? recovery process, which will in turn enable oncology professionals and navigator programs to more effectively refer survivors to appropriate community support resources. The study will test whether cultural consensus about breast cancer and survivorship exists within breast cancer support groups, and whether illness models differ when comparing mainstream with African American and Latina breast cancer support groups. The study will be implemented in three phases. Phase I will entail an ethnographic study of 3 breast cancer support groups in the metropolitan Tampa area, two groups tailored for African American women, and one group tailored for Latina women, all sponsored by the American Cancer Society. Phase II will develop a pool of approximately 100 items that will make up the Group Culture Questionnaire. Phase III will use this instrument in a structured analytic procedure called cultural consensus modeling of the groups? shared illness models. The existence of shared models will be tested using established statistical techniques for consensus modeling. We predict that both commonalities and differences will be found across models for the three groups. The modeling process will also allow us to refine our instrument to a smaller number of items for use in subsequent studies of breast cancer support groups.
Support groups are recognized as one of the most powerful resources for coping with serious illness, and are associated with numerous positive outcomes among cancer patients and survivors including an enhanced quality of life, more effective adaptation, improved immune system response, and decreased levels of anxiety and depression. Despite their potential, support groups are vastly underutilized: only a small proportion of cancer patients join them, long-term retention rates are low, and there is limited research aimed at explaining these low participation and retention rates. Furthermore, ethnic minority populations are at a particular disadvantage. The participation rate of ethnic minorities in illness support groups is notably lower than the majority white population, and organizers of support groups report the need for cultural tailoring in order to attract a diverse membership. This project aims to describe the group culture of breast cancer support groups that target African American and Latina women as a first step in better understanding the factors that influence minority women?s participation in these important resources for cancer survivorship. We anticipate that a better understanding of these factors will in turn yield a foundation for designing support programs with greater reach and relevance for diverse communities. The study has three main objectives: (1) it will describe differences in cultural models of breast cancer, recovery and support group participation across ethnically distinct populations (Here, a cultural model denotes a shared understanding among group members of what breast cancer is, and how recovery and survivorship are best experienced.); (2) it will clarify the impact of support group membership on individual survivorship experience; and (3) the results will help to prepare health care providers to better counsel and guide patients through the recovery process, including referral to appropriate support resources. Results of this study will help define a shared model for the perceived ?successful? recovery process, which will in turn enable oncology professionals to expand the role and utilization of cancer support groups and allow them to tailor groups to better meet the needs of diverse populations.