Consequences of Miscommunicating Revised Breast Cancer Screening Guidelines
In 2009, the U.S. Preventive Services Task Force (USPSTF) caused controversy when it suggested significant revisions to breast cancer screening guidelines. It advised women to initiate obtaining mammograms atage 50 rather than 40 and to seek mammograms every two years rather than annually. Advocacy groups such as the American Cancer Society and Susan G. Komen For the Cure urged women to continue screening as previously advised. As a health risk that affects women from all ages, races, socioeconomic statuses, sexual orientations, and nationalities, this major policy revision deserved attention regarding how women should make decisions about mammography amid conflicting recommendations.
To examine how women made decisions in this mediated context, we measured three major communication factors: problem recognition, the extent to which a group perceives an issue to be a problem; involvement recognition, the extent to which a group feels personally connected to the problem; and constraint recognition, the extent to which a group perceives barriers to doing something about the problem. These factors determine whether a group will become active about an issue or an organization—whether to stage a boycott, sign a petition, participate in a fundraiser, donate money, or adhere to behavioral suggestions, as in this case to seek a mammogram.
We also considered that breast cancer does not equally affect all groups of women. According to the American Cancer Society, non-Hispanic white women are affected by breast cancer more than any other racial group. However, African-American women have the highest mortality rate from breast cancer. Also, women from racial minority groups with low incomes are disproportionately affected compared with white women from middle- and upper-income levels, largely because of poverty and a lack of health insurance. We questioned, then, why the proposed USPSTF guidelines did not advise women from different races and socioeconomic statues in more specific ways, particularly according to their relative risk levels. These guidelines represented a paradigm shift in preventive care, not only in medical communities, but also among average women. We predicted such a change in everyday knowledge about women’s health might invoke confusion, anxiety, and fear among women.
To understand whether this policy change affected women differently, we conducted one-on-one, in-depth interviews and in-depth focus groups with 31 women from different racial, socioeconomic, geographic, familial/parental environments, ages, and health statuses relating to breast cancer. We provided them with a news article or news channel clip about the USPSTF policy changes and asked them the extent to which they felt targeted by the information, how important they felt it was for them to know, and whether they would comply with the new guidelines. We also asked them questions to discover what cultural and identity factors they believe contribute to their experiences with health, breast cancer screening, and information- seeking about health risks.
Among the women interviewed, we learned that women felt their multiple identities were not represented in the news coverage or the USPSTF statements about new guidelines. Specifically, many women believed the recommendations lacked consideration for how their races, classes, and gender affect their need for information on this topic. For example, Simone, a black, 31-year-old middle-class wife and mother with a graduate-level education, said she felt “there was a lot of uproar in the black community because there's a lot of disparities…because of income, you don't have insurance, so you can't get screened. When they changed those laws, it seemed like, ok, what are you trying to say? The whole triple negative issue and young, black women, but they don't want you to get screened.”
Women also felt their roles as caregivers of others in the family and community were neglected, particularly in considering how their loved ones would be cared for if they had breast cancer. For example, Jean, a white, 48-year-old wife and mother with a master’s degree, earning an annual household income of more than $100,000, said these new guidelines made her think about “[being] tired and getting old. It’s something else . . . to worry about and think about to effect change in the course of a day when there are so many other things going on.’’ These women’s experiences with receiving incomplete and contradictory information exposed a lack of understanding by the USPSTF about how to communicate with women by speaking to the multiple cultural roles they play on a daily basis.
We also asked participants who they thought made the new policies and what they thought the policymakers’ motivations were. The purpose of asking this was to gauge women’s perceived relationships with breast cancer organizations and policymakers. Overall, participants felt neglected by policymakers in their decision-making. For example, Selma, a white, 54-year-old wife and mother with a master’s degree, earning an annual household income of more than $100,000, felt her age and caregiving roles were dismissed by the task force:
“It just sounds like maybe there is definite discrimination against aging women and their significance to society. By the time you are in your 40s, you've done most things you are going to do. And they are saying, 'Don't get screened at all.' And then, you know, you're in your 50s and it's like, you've done all your important things. Your kids are grown. You're still a wife, but your husband works. So maybe this is like a form of age discrimination as well.”
Women also reported feeling skeptical of the credibility of the task force because they felt the policymakers were not people with similar backgrounds to their own. For example, they felt the task force was composed of men who made the guidelines without the input of women, had apathy for the interests of woman, and made the decisions within a “black box,” inaccessible to average women. In fact, some younger women felt an extreme disconnect as they reported they would not follow the guidelines and wait until 50 to seek a first mammogram; rather, they would seek their first mammogram earlier, at age 35.
Health, risk, and science communicators face significant challenges in disseminating evidence-based information to lay publics. However, the most important mistake to avoid in situations like this is to release guidelines for health maintenance and care without explaining the motivations, the reasons, and the potential outcomes associated with new guidelines. It is important to consider that “sea changing” guidelines may provoke fear, anxiety, and confusion among intended audiences.
Based on this study, some tips for communicating risk information to women include:
- Target gender because it is still very important to women in the information they receive. Also, relating gender to other identities and roles in women’s lives is extremely important. Consider how gender relates to race, class, age, and social role (e.g., mother, wife/partner, caregiver of parents and other relatives).
- Include women of varying intersecting identities in policy-making decisions.
- Even when establishing evidence-based protocols like this, do not release guidelines without a communication strategy. Also, always segment messages so that audience members can locate their particular risk and preventive measures in the information.
- Ask questions throughout the policy-making/campaign design process to focus on how a public’s identities affect its need for information. Important topics include:
- What specific (cultural) factors about our publics’ lives might make their communication about the issue different from other groups of people?
- What elements outside of how the publics act influence whether the publics can seek information about this issue?
- In what ways are we—communicators and policymakers—different in our identities from those whose lives will be affected by the policy and communication? How can we enact these policies in our everydaylives, and can people of different identities enact the policies in the same ways? If not, why not?
- What are the ways these messages could be perceived by people with different identities beyond “obvious” identities? What undesirable outcomes may occur because of these representations?