The NCI-designated University of California, Davis, Cancer Center, an American Indian Advisory Council of 12 members from eight tribes and the Turtle Health Foundation, Inc., an AI/AN nonprofit organization established to improve the health of all AI/ANs, partnered in 2004 to conduct focus groups/interviews with AI/AN women to learn more about beliefs and knowledge of breast cancer, and to test a prototype of the resulting Mother’s Wisdom Breast Health Program delivered via a multimedia, interactive DVD.
The results led to an 18-month pilot study with 161 AI/AN women funded by the California Breast Cancer Research Program. Studies have focused on the first step to behavior change: changing knowledge levels, attitudes, and beliefs as well as intentions to change lifestyle (dietary changes and increased physical activity) and screening behaviors. We used a validated Knowledge, Attitudes, and Beliefs (KAB) multiple-choice survey in pre- and post-test design. The women completed the pre-test, watched, and discussed the Program DVD in Talking Circles, then took the post-test.
The DVD contains a menu of several short video segments on nutrition, exercise, breast structure and function, breast self-exams, mammography screening, breast cancer myths, and stories shared by AI/AN breast cancer survivors. “Rez Robics,” featuring well-known AI/AN celebrities exercising to American Indian music and simple daily exercises that women could do at home or work was demonstrated by two members of the Council to encourage repeat usage of the DVD and retention of the content.
In the traditional AI/AN community, the medicine man or woman plays an important role in health care. For that reason, a medicine woman serves as co-chair of the American Indian Advisory Council, is a co-PI on the grants received, and co-authored this paper. She provides a welcome message on the Program DVD and assisted in presenting the Program to participants. Storytelling is also a unique and effective means of communicating important information in tribal communities and was used in the Program to convey information and experiences.
The use of Talking Circles is another strategy used that is drawn from AI/AN heritage and is suited for disseminating health-related information. While Talking Circles can have an educational component, their real value is the caring and supportive environment that is created to openly discuss concerns and issues related to health and well-being [2
We used the Steps-to-Behavior change (SBC) model because it identifies intermediate program effects and specifies indicators to measure the process of behavioral change as it unfolds [12
]. The measurement of intermediate steps or sub-indicators provides opportunities for early assessment in time for corrective action in the intervention. We used indicators of individual behavior change through each step: knowledge, approval, intention, practice, and advocacy with the idea being that behavioral change is preceded by changes in attitudes, beliefs, and knowledge as well as by developing an intention to change behavior. The study focused on measuring changes in attitudes towards breast cancer, as well as awareness and knowledge, and intentions to change lifestyle and mammography behaviors. Because intention to change precedes behavioral change in the model, the focus of this study was on intentions before and after participating in the program.
The validated Knowledge, Attitudes, and Beliefs (KAB), multiple-choice instrument was used in pre- and post-testing. The instrument is adapted from the National Behavioral Risk Factor Surveillance System (USDHHS) [13
] and modified versions of Behavioral Risk Factor Surveillance System questionnaires validated in AI/AN populations and used on a Northern Plains reservation [14
], as well as in urban AI/AN communities [15
]. Besides items on knowledge and attitudes, other items inquire about demographics (age, marital status, children, education, income, and insurance type) and includes questions about the length of time since the woman’s last clinical breast examination and last mammogram.
A third instrument focused on the technical aspects of the DVD (quality of audio, visuals and video; ease of navigation and use, and evaluation of content) included questions about intended lifestyle and screening behavioral changes and was administered following the DVD.
The research plan, survey, recruitment plan, and recruitment materials were approved by the University of California, Davis Institutional Review Board as well as by the American Indian Advisory Council and the Turtle Health Foundation, Inc.
Recruitment of the 161 AI women ≥40 in our study was accomplished through (1) the efforts of the American Indian Advisory Council, (2) the California Rural Indian Health Board (CRIHB), (3) tribal health clinics, and other American Indian organizations. Additional activities were undertaken using booths, exhibits, and recruiting stations at tribal Pow Wows, at the National Congress of American Indians, tribal health gatherings, and at elder gatherings. AI women ≥40 and older self-selected to participate and the PI followed up to determine eligibility, to consent participants, and to deliver the pre-intervention survey. A free copy of the DVD and an American Indian Ribbon of Life were given to all who participated.