Abstract
The purpose of the study was to explore knowledge, beliefs and behaviors surrounding breast cancer among Amish women and to explore the impact of a breast cancer intervention over time. The Amish are a religious group who settled in the United States in the 1600s for religious freedom and are often known for their passive lifestyle and separation from the modern world. Home to the world's largest Amish settlement, Ohio also houses dozens of Amish and Mennonite communities found most often in the rural and Appalachian sections of the state where access to cancer education and care is severely limited by transportation, translation and technology. Prior research by the community-led “Project Hoffnung” (or Hope) program led to discovering disproportionately high breast cancer mortality rates among two of the world's largest Amish settlements, but little was previously known about knowledge and screening behavior.
Since no census data is collected on Amish religious affiliation, permission was granted to review all 5,275 families in the 2000 Ohio Amish directory comprising six counties. All females over the age of 40 were entered into a Microsoft Access database. A cluster random sample design was chosen for the study to ensure that any woman randomly chosen would not be isolated in her own church district. A total of 75 (out of 185) church districts were randomly selected to reach the desired mailing of 1200 women over the age of 40. The questionnaire was developed based on Champion's Breast Health Survey (1999) and also included screening compliance questions based on the Transtheoretical Model. The survey was mailed in late 2002 and again in early 2013.
The response rate was 29% (n=338) and 22% (n=243) for the first data collection and 10 year follow up, respectively. The respondents had a mean education of 8.3 years and a mean age of 55.5 and 64.3, pre and posttest respectively. Most were married (89.8% pre and 77.7% post) and almost all saw a medical doctor (97.5% pre and 96.1% post). Employment rose 4% in the community from 8.4% to 12.4%. While the majority had heard of a mammogram (97.3% pre and 97.9% post), only 59.0% pre and 71.2% post had ever been screened with one.
A total of 140 people completed both surveys, and 68 people received the culturally competent education intervention developed by Project Hoffnung only between the testing periods. The mean number of years of participation was 1.85 years. The average number of years between participation was 2.03 years. There is evidence (p=.001) that people who participated in Project Hoffnung were significantly more behaviorally compliant after 10 years. Interestingly, behavioral compliance gained over the ten year span is associated with number of years participated and years since last participation (r=.637, p=.005). Knowledge in the posttest and behavioral compliance in the posttest were correlated (r= .645, p=.0001). However, trends based on linear regression models show knowledge scores increased 3.57% for every year of participation, but decreased 3.41% for every year since participation. Interestingly, data also showed a correlation between pretest behavioral compliance and participation, suggesting that people who were worried about breast cancer sought out the Project Hoffnung program and used it to continue being compliant. Despite gains in knowledge for those who participated in the program, certain questions related to risk and myths associated with breast cancer moved little over time.
Results of the study reinforce the notion of regular, consistent participation in a culturally competent education program for knowledge and screening compliance to increase.
Note: The author block has been changed and no longer matches the print Proceedings.
Citation Format: Melissa K. Thomas, David W. Drees, Doretta Thomas, Barbara Miller. Knowledge, attitudes, beliefs, and behaviors surrounding breast cancer among Amish women: A 10-year review. [abstract]. In: Proceedings of the Sixth AACR Conference: The Science of Cancer Health Disparities; Dec 6–9, 2013; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2014;23(11 Suppl):Abstract nr C94. doi:10.1158/1538-7755.DISP13-C94
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