Friday, 14 January 2005 - 2:00 PM

This presentation is part of: Psychosocial Impact of Medical Illness and Disability

Utlizing a Community-Based Participatory Research Approach to Understanding the Needs of African American Women Diagnosed With Breast Cancer

Purpose: Although White women have a higher incidence of breast cancer, African American women are significantly more likely to die from it. And, group disparities persist even after controlling for access to care. The factors that contribute to this health disparity likely are numerous and complex. Community-based participatory research (CBPR) is a promising approach for including stakeholders in investigations of group differences in health. In the present study, CBPR was used to include community members as co-investigators in identifying factors underlying higher mortality rates from breast cancer among African American women living in Chicago. Methods: 15 of Chicago’s 77 designated neighborhood areas, all predominately African American and located on the South Side, were targeted. Specific recruitment techniques were utilized to obtain a representative sample from each of the neighborhood areas. Focus groups were held within the neighborhoods in which participants resided. Interviews based on CBPR principals were designed to allow issues, beliefs, and concerns to emerge from group members. This was done by: 1) constructing groups so that no members were dominant over others and 2) using broad questions that minimized interviewer bias and the shaping of responses. Unstructured interviews lasted for approximately two hours. 250 men and women over the age of 18 years of age were interviewed in 30 groups. All focus groups and interviews were transcribed and analyzed with the use of NVivo software. Results: A number of significant themes were identified that cross-cut neighborhood areas. Participants identified the following neighborhood factors as significant to breast cancer and its treatment: environmental toxins, lack of education about breast cancer within the community, lack of affordable insurance, inability to purchase healthful foods, and limited opportunities for high-quality cancer treatment within neighborhood areas. Older participants noted a trend away from education within public schools about health. Identified psychosocial barriers to preventative and breast cancer treatment included fear and social isolation, likely emanating from neighborhood factors. A number of beliefs were raised that conflict with existing empirical evidence, and might themselves serve as barriers to timely treatment. A significant percentage of participants, for instance, identified older African American women as more at risk for getting breast cancer than younger women. Participants were, in fact, almost universally unaware of the earlier forms of breast cancer among African American women. Also, the belief that trauma is a major source of breast cancer was associated with a disinclination to obtain mammograms. Policy and practice implications: Data gathered from this qualitative study suggest a number of health care policy and practice changes, such as how treatment and education are provided in predominantly African American communities. Instead of being proscriptive in nature, community health messages should be supplemented by education about health maintenance and wellness. Additional recommendations will be outlined.

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