Awareness of and reactions to mammography controversy among immigrant women

Abstract Background There is substantial expert disagreement about the use of mammography to screen for breast cancer, and this disagreement routinely plays out in the media. Evidence suggests that some women are aware of the controversy over mammography, but less is known about whether immigrant and other underserved women have heard about it and, if so, how they react to it. Objective To explore immigrant women's awareness of and reactions to mammography controversy. Design Community‐engaged qualitative study: we conducted six focus groups with 53 women aged 35–55 from three immigrant communities (Somali, Latina and Hmong) in a major US metropolitan area. A grounded theory approach was used to identify themes; NVivo 10 was used to enhance analyses. Results Several themes emerged: (i) low awareness of mammography controversy across groups, despite self‐reported attention to health information; (ii) high intentions to be screened, even after being told about the controversy; (iii) few reported discussions of mammography's risks and benefits with clinicians; (iv) substantial interest in learning more about mammography and breast cancer, but some low self‐efficacy to obtain such information; and (v) questions about whether health recommendations matter and what qualifies as evidence. Conclusion Given on‐going expert disagreement about mammography screening, it is important for clinicians to help women understand mammography's risks and benefits so they can make an informed choice. This is particularly critical for immigrant and other underserved women, who may be less able to access, attend to, process, retain and act on health information (a phenomenon known as communication inequality).

October 2015, when ACS changed its long-standing recommendation that average-risk women begin screening at age 40. 7 The organization now recommends annual screening beginning at age 45 and biennial screening once a woman turns 55. The new ACS guidelines still conflict with those of the USPSTF, which continues to recommend routine biennial screening starting at age 50. 8 Importantly, such scientific debate routinely plays out in the media.
Following the 2001 Cochrane review, news coverage by high-profile outlets such as the New York Times prompted widespread attention, placing mammography controversy on the public agenda. 9 Additionally, content analyses of the 2009 USPSTF announcement showed that coverage can be dramatic and sometimes misleading. One study found that 33% of news stories were politicized and controversial in tone, 10 and another found that coverage was unbalanced, with the majority of news stories and social media posts unsupportive of the recommendations. 11 Parties who were highly motivated to respond-professional organizations as well as breast cancer survivors and advocates-issued statements and rebuttals, which also received coverage. 12,13 Ultimately, with each new set of recommendations, and each new study on breast cancer screening and mortality, journalists often invoke a controversy frame. 14 News stories will remind readers about the disagreement among experts, or refer to prior research that conflicts with the latest study. In so doing, they underscore the on-going debate for the public.
For example, in 2014, several studies were published that questioned the value of screening. 15,16 Not only did these studies receive substantial coverage, but journalists frequently contextualized research findings by referencing prior expert disagreement (e.g. "Doctors have debated the value of mammograms for years"). 17 Given the breadth and intensity of media coverage, a central question is whether the public is aware of the controversy over mammography and, if so, how it reacts to it. Overall, there is evidence that some women do perceive such conflict and controversy, with estimates ranging from approximately one-third to one-half of general population women. 11,[18][19][20] Nearly one-third have reported being confused about screening recommendations, 11 and one study on mammography utilization rates post-2009 found a pattern consistent with such confusion (i.e. initial drop in screening followed by an upswing). 21 There is also some evidence of backlash, with women reporting negative attitudes toward screening recommendations. 20,22 Less is known, however, about whether women from underserved populations are exposed to mammography controversy. 23 This is a pressing concern, because vulnerable populations may be particularly unable to reconcile conflicting and controversial health messages in the media. 14 Research on communication inequalities 24 -defined as differences in social groups' ability to access, attend to, process, retain and act on information-suggests not only that lower levels of health literacy could influence processing of conflicting screening messages, but that underserved women may have fewer opportunities and/or feel less able to discuss confusion with clinicians. Additionally, cultural beliefs about the nature and value of science could vary across population subgroups, and thus may influence how some women interpret and understand screening messages. Ultimately, greater confusion about screening recommendations and less trust in guidelines could influence women's intentions to schedule or keep a screening appointment. Figure 1 depicts the possible cognitive and behavioural effects of media exposure to mammography controversy, which could be exacerbated by communication inequalities.
The potential for such differential message effects among underserved women is worrisome, given persistent cancer disparities, particularly among immigrant women. 25 Later stage at diagnosis, due in part to lack of screening, is one factor contributing to higher mortality rates in immigrant communities. 25 Indeed, data show that women who are recent immigrants have some of the lowest rates of mammography screening, and this is true for women aged 40-49 and 50-74. 26

| Participants
The Twin Cities metro has the largest Hmong and Somali populations of any US metro, 34,35 as well as a growing Latino population from countries including Mexico, El Salvador and Guatemala. 36 We therefore chose to sample women from these three prominent immigrant communities, which are sufficiently diverse to allow us to explore perceptions of mammography controversy across communities.
Because the goal of this research was to explore immigrant women's awareness of and reactions to controversy-rather than to compare and contrast the perceptions of women from different immigrant communities-our analysis focused on identifying themes that emerged across all three communities. This qualitative study used focus groups, a valuable methodology for exploring people's perceptions, experiences and reactions. 37

| Procedure
All groups were held in community settings and facilitated in Somali,

| Analysis
Grounded theory principles guided data analysis and interpretation. 40 This inductive approach allows themes and concepts to emerge from the data. Academic team members (RHN, JAL, and LSG) read the focus group transcripts, analysed and coded data using the constant comparative method. 41 This technique requires researchers to be "constantly alert to the similarities and differences which exist between instances, cases and concepts, and to ensure that the full diversity and complexity of the data is explored." 42 (pp. 261-262) As themes emerged, coders reread and recoded transcripts, ensuring that themes were grounded in data, and resolved any disagreement through discussion. This iterative process continued until no new information emerged. 41 One team member (LSG) used NVivo 10, the computer-assisted qualitative data analysis system from QSR International, to enhance these analyses by extracting and organizing themes and example quotes, which corresponded to those identified through hand coding. All themes and illustrative quotes were member checked with a SoLaHmo partner (SP).

| RESULTS
Given the current study's research questions, our analysis focused on domains 3-5 of the question guide (Table 2). Within each domain, several dominant themes emerged.

| Low awareness of mammography controversy across groups, despite self-reported attention to health information
Awareness of mammography controversy was virtually non-existent; across groups, only one woman had heard about such controversy, and only after the facilitator's prompting (see Table 2, Domain 3 for a sample question prompt). Importantly, this lack of awareness cannot be entirely explained by insufficient opportunities for exposure: the 2014 mammography studies that garnered national attention were widely covered by local media, 43,44 and, across groups, women reported engaging with health information. Frequently used sources included medical (e.g. physicians, other providers), mainstream traditional and digital media (e.g. broadcast news, Internet, social media), ethnic media (e.g. Hmong Radio) and interpersonal sources (e.g. friends, family).
After being told that experts disagree on the age of screening onset, many women still found the message that mammograms begin at age 40 to be highly salient. Family/close friend ever had breast cancer b Ns vary across items due to missing or refusals. Percentages may not sum to 100 due to rounding. (Continues)

| Few reported discussions of mammography's risks and benefits with clinicians
Across groups, few women reported that their clinicians described the risks and benefits of screening during well-woman visits-discussions that are recommended by the ACS, USPSTF and other organizations to promote informed decision making. As one woman explained: Despite this and other potential barriers (e.g. language challenges), several women recognized that they would likely need to be the ones to initiate the risks/benefits conversation. One woman said, "Me? I will ask.
Ask questions and get more information. If there really is a risk that's very constant or something with my mammogram, I will ask" (L1). Another woman indicated that, in the past, her clinician never discussed the risks/ benefits of screening, but "now I will get checked up and consult with my doctor" (S1).

| Substantial interest in learning more about mammography and breast cancer, but some evidence of low self-efficacy to obtain such information
Several women expressed interest in learning more about mammography controversy. The one woman who indicated she had heard about the controversy said that, as she approaches age 40, she will seek information from multiple sources, including her clinician:

| Questioning whether population-based recommendations matter
In discussing mammography controversy, some women questioned the value of guidelines like the ACS or USPSTF recommendations.
Rather than relying on population-based recommendations and the professional organizations that issue them, several women felt decisions should be made on an individual basis: "I think they [clinicians and experts] should treat people as individuals. Like saying…it could be a familial thing, it could be a dietary aspect or maybe due to being overweight" (L2). One woman also emphasized the role of autonomy in screening decisions and added that one's personal clinician (rather than an impersonal organization or task force) should make recommendations: "I think it's a personal choice and also-I honestly think it should be your own personal doctor and it's going to depend on your relationship with your doctor" (H2). To this end, one woman suggested, "Maybe there shouldn't be any [recommendations]" (H2).

| DISCUSSION
To date, most research on women's awareness of and reactions to mammography controversy has focused on the general population. These studies have found that some women perceive conflict and controversy about mammography, and some report adverse reactions including confusion about screening recommendations. 11,[18][19][20] Yet it is equally if not more important to assess perceptions of controversy among underserved women-who, facing communication inequalities, might be particularly unable to reconcile conflicting and controversial screening messages, experience even greater confusion and possess fewer opportunities to discuss such confusion (and, more broadly, the risks/benefits of screening) with clinicians (see Fig. 1). We are aware of only one study (by Allen and colleagues) that has explored this issue among diverse women. 23 The current study focused on immigrant women in particular, and in our Somali, Latina and Hmong sample, we found that women were largely unaware of expert disagreement about mammography. This finding was consistent with Allen et al.'s results, and awareness was lower than in general population studies. 11,20 This low exposure can- When women were made aware of the controversy, there was little evidence of confusion and negative attitudes were rare. These findings contrasted with the Allen et al. study, which found that women were both confused about mammography recommendations and suspicious of changes, questioning whether insurers and providers were trying to reduce health-care costs. 23 In our study, participants reported that screening at age 40 made sense to them-often noting that age 50 seemed too late-and many reported intentions to screen in the future.
The fact that most women in our sample remained committed to screening after learning of the mammography controversy is consistent with recent studies on overscreening and overdiagnosis. US society has long been enthusiastic about cancer screening, 48 and recent recommendations-which brought the risks of overdiagnosis to the fore-do not appear to be shaking women's confidence in screening. 22 Similar enthusiasm has been seen in the United Kingdom 49,50 and Australia. 51 In addition, while evidence suggests that overuse of care may be more common among whites, 52 for historically underserved women, relinquishing screening might be seen as losing hard-fought access to preventive care. 23 That said, some immigrant women did seem to question the value of screening. It is not known whether their comments reflect ambivalence toward screening or overreporting of screening intentions, 46 but it suggests that clinicians and public health practitioners must proceed with caution-encouraging prevention and screening to reduce inequalities, while also promoting informed decision making and understanding of screening's risks and benefits. Future research that takes this broader perspective should be conducted with non-immigrant women to enable stronger comparisons.
It is likely that breast cancer screening recommendations will continue to evolve, as the evidence base grows and medical technology advances, and they are likely to remain high on the media agenda. In time, awareness of mammography controversy may become more widespread. It is therefore critical for clinicians to help women to negotiate mammography's risks and benefits so they can make an informed choice-a particular challenge in today's complex information environment. There also may be a role for communication campaigns and other public health interventions designed to reduce cancer disparities. For example, instead of using ethnic media to promote screening at age 40, it may be important to promote talking to one's clinician about when to start screening. Clinical interactions may not always afford the time or opportunity for risks/benefits discussion.
Arming women with information via other channels may be necessary if we are to support informed decision making and, ultimately, prevent widening cancer disparities.

ACKNOWLEDGMENTS
We thank the following community researchers from the Somali,