A101 African American Women’s Knowledge and Willingness to Participate in a Preventive Breast Cancer Clinical Trial.
Michigan State Univ., East Lansing, MI.
This investigation was a first step to understanding the knowledge and the willingness of African American women to participate in chemoprevention trials (CT) Objectives:
1) To better understand their barriers in participating in CT;
2) To better understand their motivation for CT and;
3) Identify strategies that contribute to their increased participation CT.
Method: Forty African American women from 4 Michigan cities participated. Using a community based research approach women were recruited to be in the study by other African American women who held formal leadership positions within a community based organization, had experiences with cancer, either as a patient or as implementing a cancer prevention project, and had a basic understanding of the research process.
On the average focus group participants were age 55, all were asymptomatic and had a family cancer history.
Theoretically, they could have been eligible to complete a breast cancer risk assessment. Stenographers in each city recorded the statements of the focus group participant verbatim and provided a transcript. Two investigators coded data independently. One person used qualitative software package and the other used inductive coding.
Independent coding categories were compared, along with the observer notes, and discussed, revised until broad themes emerged. They were validated by consensus and in accordance with the general practice of grounded theory.
Results: Three themes emerged across the four cities:
1. Lack of knowledge regarding CT; 3. Informed consent;
2. Family as a motivating influence. Some compared clinical trials to mammography screenings.
After an explanation, CT were viewed as positive, but with some skepticism. Most women didnt have a clear understanding of informed consent. Many didnt know their rights to leave a study.
Families were mentioned most as the biggest motivating factor in their decision to participate or not. This included knowing their family cancer history as well as deciding to participate based on their familys input.
Discussion: This study suggests lack of understanding of CT and the process surrounding human subjects rights is why African American are reluctant to enter participate in CT. Social education status is not a factor, but lack of exposure to the concept of CT. Community stakeholders who heard the findings were not knowledgeable of CT or CT in their community.
The benefits of CT were unclear. This study suggests that prior to enrolling African American women into chemoprevention trials investigators will have to design a research readiness strategy that includes education about cancer, clinical trials and the research process, for women they would like to target and include community stakeholders as well.
In addition, these findings suggest a need for further investigation connecting family cancer history and family decision-making regarding cancer prevention and screening behaviors among African American women.
These data clearly demonstrate that African American women do not make major health decisions in isolation, because of this further investigation of interventions that include this cultural process are warranted.
Frontiers in Cancer Prevention Research, 2003
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