Add general breast cancer information
Many of the women were also interested in information about breast cancer that was not related to physical activity. Some of the women reported having little information about breast cancer. “I almost think that maybe more information about breast cancer to go with it would have been helpful. Because in my situation, my mother currently does have breast cancer…. I know basically that it puts me at a higher risk to get it, but that’s pretty much where my knowledge stops” (28yo, mother BC). Another woman had outdated information: “My mother died from breast cancer, so I had a lot of information. But it’s dated, because she died in 1996. So it would have been great for me to learn what they’ve learned since 1996” (52yo, mother BC).
One woman was not interested in general breast cancer information. She reporting having a high level of knowledge and suggested a personalized approach where information was provided based on an individual’s need: “So when she was diagnosed I started collecting all sorts of information and actually my sister had it in 2001. So it was kind of like, I, oh for 10 years now it’s been circulating around my family. So for me I already knew more than I really wanted to know about breast cancer. And I kind of like, for me, it wasn’t going to be helpful for me personally. So perhaps an assessment of one’s like level of knowledge and understanding prior to enrollment in the study, might help to guide what materials are actually disseminated to people” (38yo, mother and sister BC).
Through the focus groups some of the women learned that the information they had was not accurate, which led to an interest in learning more about facts and myths about breast cancer and breast cancer risk. Several women also expressed an interest in receiving breast cancer related resources. This varied from books and suggested readings to local support groups for breast cancer survivors and their family members.
Based on this feedback we proposed adding several types of breast cancer related information into the study and used the second set of focus groups to identify the specific topics they wanted covered in the new materials. Participants were interested in learning about genetic testing for breast cancer, information on free and low-cost mammograms, local breast cancer related talks (given by hospitals), questions to ask their doctor, breast cancer support groups and family member support groups, breast cancer related charity walks, mental health resources, and reputable breast cancer related websites.