Perspectives on Communication and Participation in Research Notification Focus Groups.

Health Communication

ISSN: 1041-0236 (Print) 1532-7027 (Online) Journal homepage: http://www.tandfonline.com/loi/hhth20

Perspectives on Communication and Participation in Research Notification Focus Groups Heather M. Zoller, Kaori Fujishiro, Amy Mobley & Everett Lehman To cite this article: Heather M. Zoller, Kaori Fujishiro, Amy Mobley & Everett Lehman (2015) Perspectives on Communication and Participation in Research Notification Focus Groups, Health Communication, 30:10, 986-1000, DOI: 10.1080/10410236.2014.913221 To link to this article: http://dx.doi.org/10.1080/10410236.2014.913221

Published online: 08 Oct 2014.

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Date: 08 November 2015, At: 09:21

Health Communication, 30: 986–1000, 2015 ISSN: 1041-0236 print / 1532-7027 online DOI: 10.1080/10410236.2014.913221

Perspectives on Communication and Participation in Research Notification Focus Groups Heather M. Zoller

Downloaded by [University of Pennsylvania] at 09:21 08 November 2015

Department of Communication University of Cincinnati

Kaori Fujishiro, Amy Mobley, and Everett Lehman Division of Surveillance, Hazard Evaluation, and Field Studies National Institute for Occupational Safety and Health

Researchers are slowly acknowledging an ethical obligation to inform research participants about study findings. Research notification may help participants become aware of and manage potential health risks. Scholars and practitioners have acknowledged the need for better understanding of this process. This study investigates transcripts of focus groups conducted to gauge audience reactions to notification materials that communicate scientific research findings about occupational exposures. Focus groups are a useful way to tailor notification materials to audiences, but we caution that transmission models of communication used in risk research may obscure the full value of focus groups. The emphasis on translating scientific communication into “lay” language may overlook how scientists and lay audiences can work together to bridge differences in language, experiences, goals, and orientations toward health. This study demonstrates limitations in scientific risk communication that minimize participation in communicating science. The conclusion provides instructive insights for strengthening the process of communicating science.

A growing number of researchers have begun to acknowledge an ethical obligation to inform research participants about study findings (Dorsey, Beck, & Adams, 2008; Parrot, 2008). Communicating research results may help participants become aware of potential health issues, which may facilitate better lifestyle choices, preventive screenings, and medical treatment (Turner, Skubisz, & Rimal, 2011). This form of risk communication is challenging because of the need to translate and comprehend scientific language for different health literacy levels (Cameron, Wolf, & Baker, 2011), the potential for results to be upsetting, and the often uncertain nature of research findings and their implications for This article is not subject to U.S. copyright law. The findings and conclusions in this article are those of the authors and do not necessarily represent the views of the National Institute for Occupational Safety and Health. Correspondence should be addressed to Heather M. Zoller, PhD, Department of Communication, University of Cincinnati, Cincinnati, OH 45221-0184. E-mail: [email protected]

individuals (Turner et al., 2011). Scholars and practitioners have acknowledged the need for better understanding of this process (Buck, Vena, McGuinness, Cooney, & Louis, 2010). This study investigates audience reactions to notification materials designed to communicate scientific research findings about risk(s) associated with occupational exposures to potentially harmful substances. Ideally, research notification materials such as advertisements, fact sheets, pamphlets, and websites should be adapted to target audiences in order to engage attention, provide understandable information, and promote health protections. These materials may be developed using general guidelines about communicating scientific language, such as avoiding jargon, using charts, and avoiding too much text (Cameron et al., 2011; Zimmerman, 1993). Using formative focus groups is a more valuable way to gauge audience reactions and tailor messages to audience needs (Bull, Cohen, Ortiz, & Evans, 2002; Needleman & Connally, 2003; Zimmerman, 1993), rather than postnotification surveys alone (Buck et al., 2010; Dorsey et al., 2008).


PERSPECTIVES ON RESEARCH NOTIFICATION FOCUS GROUPS

Still, more research is needed to understand how audiences interpret research findings, particularly in the context of occupational health. This study analyzed transcripts from seven focus groups with a sample of workers who were included in retrospective cohort studies on occupational exposures to polychlorinated biphenyls (PCBs) and ionizing radiation. The purpose of the focus groups was to identify ways to improve the design of communication materials (fact sheets) for readability, reach, and impact. In the transcripts, participants described a number of ways that the notification information could be more relevant and understandable. We caution, though, that facilitators may not recognize the full value of focus groups if they are guided by the lens of transmission models of communication, which limit their focus to “packaging” and “delivering” notification materials. The emphasis on translating scientific communication into “lay” language may overlook how scientists and lay audiences can work together to bridge differences in language, experiences, goals, and orientations toward health. In this study, participants resisted focusing solely on packaging information; instead, they narrated their own experiences and posed questions in ways that challenged study methods, results, and implications. A surface-level reading of the focus group transcripts guided by the transmission model may conclude that workers failed to focus and engage with the questions asked. We argue instead that workers’ responses demonstrate narrative logics that challenge traditional scientific risk communication models. Our literature review presents more robust, relational and constitutive theories of communication that account for focus-group participant reactions and facilitate greater opportunity for participation throughout the process. After describing the study methods, we present the analysis of the transcripts, which suggests that workers appreciated the chance to participate and were deeply engaged with the research results, but expressed concerns about a perceived lack of attention to their experiential expertise about the job, their lived experience of health concerns, and their perception of study benefits. Based on this analysis, the conclusion provides recommendations for improving notification processes.

THEORIES OF COMMUNICATION AND RISK SCIENCE Despite numerous critiques, the transmission model remains a common way of understanding communication (Harrison, 2008). Guided by this model, research notification primarily involves health communicators designing information in fact sheets, pamphlets, or websites so that it can be received clearly and accurately by study participants, involving efforts such as adapting scientific terminology and creating graphs (Dorsey et al., 2008; Zimmerman, 1993). This focus on

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packaging information guided by the transmission model overlooks the social, historical, and political contexts that shape audience responses to notification materials. More robust relational and constitutive communication theories would facilitate more productive encounters between scientists and research participants. Underlying popular conceptions of communication is the conduit metaphor (Axley, 1984; Reddy, 1979). The conduit metaphor depicts communication as the transmission of ideas between people. Common expressions suggest that people package thoughts, ideas, and feelings into words and audiences extract those thoughts, ideas, and feelings—for instance, “putting ideas into words,” “getting the message across,” and “receiving the message.” The metaphor reflects Shannon and Weaver’s (1963) “Sender–Message–Receiver” transmission model of communication. As Reddy (1979) pointed out, the metaphor treats communication in physical terms as something sent and received, overlooking the symbolic and relational nature of the communication process. By discounting questions of meaning and interpretation, the conduit metaphor implies that communication is relatively easy. If we package ideas in a “clear” way, audiences will “get the message” as intended, ignoring the need for redundancy and feedback (Axley, 1984). In addition, transmission approaches tend to focus on the expression of information by independent, autonomous, already-formed subjects and thus overlook the ways that meanings, attitudes, and beliefs are themselves formed through communication (Deetz, 1992). Practitioners reflect these assumptions when they focus on disseminating research findings through largely one-way communication (Lindenfeld, Hall, McGreavy, Silka, & Hart, 2012). More robust theories conceptualize communication as (a) symbolic and constitutive, (b) relational and interactional, (c) contextualized and historical, and (d) political. Communication does not involve the physical transfer of ideas; rather, we attempt to co-construct meaning using symbolic means such as words and nonverbal cues that are arbitrary signs (Anderson, Cissna, & Arnett, 1994). The meanings we associate with those signs are simultaneously social (shared) and individual (unique; Bakhtin, 1981; Holquist, 1990). For instance, workers’ understandings of health are symbolically and culturally shared to some degree and simultaneously shaped by unique family histories, experiences, and interpretations. Although we punctuate interactions by defining beginning and ending points, communication is continuous—our interactions are influenced by evolving history and context (Needleman & Connally, 2003; Watzlawick, Beavin, & Jackson, 1966). Through communication, we attempt to coconstruct meaning and negotiate relationships (Bartesaghi & Castor, 2008). The focus on translating scientific research into lay terminology overlooks the mutual translation inherent in all communication as we attempt to create meaning between people (Barge & Little, 2002).


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Moreover, from a social constructionist perspective, “communication is not a neutral vehicle by which an external reality is communicated about” (Pearce & Pearce, 2004, p. 42). “We speak rather of meanings, personalities, acts, institutions, and so forth as being constituted in communication” (p. 43). As a result, communication involves the formation of knowledge and experience rather than just their expression (Deetz, 1992). We produce and reproduce social perceptions of reality through language. Thus, our identities, beliefs, and worldviews are not self-contained and preformed, but constructed, performed, and negotiated through communication. The transmission model does not account for the relational aspects of communication. Watzlawick, Beavin, and Jackson (1966) described the report and command function of utterances. The report function focuses on the content of what is communicated, while the command function defines the relationship (including status) between those involved in an interaction. Focusing on relational aspects of communication also entails addressing how particular interactions are influenced by historical contexts, such as personal experience, previous relational histories, and broader social distinctions including gender, class, and ethnicity, which are themselves constituted through communication. The development of shared meaning and the social construction of reality have political consequences in constructing and negotiating different, sometimes conflicting, interests. For instance, Hardy and Phillips (2004) suggested that individuals and groups exercise power by “articulating meaning in ways that legitimate their particular views as ‘natural’ and ‘inevitable,’ link the actions and preferences of other actors to the achievement of their interests, and make particular socially constructed structures take on a neutral and objective appearance” (p. 304). Foucault (1980) describes power in terms of the production of knowledge and regimes of truth. Relations of power, though, are always marked by struggle and resistance (Fleming & Spicer, 2007; Foucault, 1979). Communicating about risk often entails struggles between different forms of knowledge and involves groups that may be marked by power differentials. Communicating Scientific Research Traditional scientific communication reflects transmission models by focusing on one-way communication from experts to citizens (Kinsella, 2004), but scientists in areas such as environmental and occupational health have encouraged more interaction with publics (Corburn, 2005). Unfortunately, “two-way communication” may be limited to input about the best ways to translate already-existing science into lay terms, whereas relational theories of communication encourage more participative approaches to risk communication. The distinction between scientific and “lay” audiences can be problematic. Gwyn (2002) critiqued the term “lay”

in literature about public perspectives on health and illness, arguing that the term is predicated on the existence of an expert or official version of health and illness that connotes deficiency in the nonexpert perspective about health. The term fails to address the experiential knowledge about health and the body that nonscientists have. The term “lay” may obscure how nonscientists use science and scientific reasoning along with experiential knowledge in their accounts of health and illness (Dutta-Bergman, 2004; Kroll-Smith, Brown, & Gunter, 2000). Moving toward a more dialogic conception of science communication would entail respecting the public’s practical epistemologies and its combination of scientific and personal experience (Corburn, 2005). Moreover, participative approaches to research facilitate greater levels of health citizenship and activism, reflecting many publics’ increased expectations for self-advocacy and community advocacy related to their health (Geist-Martin, Ray, & Sharf, 2003; King & Hyde, 2012; Rimal, Ratzan, Arntson, & Freimuth, 1997; Zoller, 2005). Risk communicators express concern that research notification may create fear (Race, 1993), and investigate how emotion influences audience risk processing (Powell, Dunwoody, Griffin, & Newirth, 2007). Such positions may treat scientists as rational and nonscientists as irrational. Indeed, the public often interprets and responds to science through narrative sense-making. Humans are fundamentally storytellers (Fisher, 1984), and narratives help publics make sense of uncertainty (Bruner, 1990), plot events to assert causality (Manoogian, Harter, & Denham, 2010), “act persuasively to make abstract hazards immediate and personal” (Zoller, 2012, p. 23), and enable a sense of control (Sharf, Harter, Yamasaki, & Haider, 2011). Narrative rationality considers, among other things, the coherence of discourse in terms of its argument structure and material comparison to other stories (Fisher, 1984). Narrative accounting of health and illness is built on biographical epistemologies from individuals’ lived experience (Kroll-Smith et al., 2000). Scientists’ commitment to objectivity in health research may lead to the exclusion of the public’s experiential knowledge (Brown, 2007). From a social constructionist perspective, though, scientific communication also creates a narrative account of choices made in the research process (e.g., setting hypotheses, sample sizes, control group, significance thresholds, data sources for exposure and health outcomes). Scientific narratives are built on highly specialized knowledge bases and expressed in specialized terminology such as confidence intervals and dose response, which can unintentionally disenfranchise nonscientists. Finding ways to bridge these narrative formats creates the opportunity for mutual understanding. Our study investigates how audiences interpret communication about scientific research. What do worker narratives tell us about how their lived experience and prior beliefs inform their reaction to notification materials? How do


workers address the relational and political context in which they interpret research findings? By seeking answers to these questions, this analysis explores how notification might be improved.


STUDY METHODS: UNDERSTANDING WORKER PERSPECTIVES ON NOTIFICATION This study examines the transcripts of focus groups with participants of retrospective cohort studies on occupational exposure to PCBs and ionizing radiation. These studies were conducted by researchers in the Industrywide Studies Branch of the National Institute for Occupational Safety and Health (NIOSH). The focus groups were conducted to evaluate notification materials developed to convey findings from these studies.1 The notification material reports the results of cohort studies to the workers whose records were analyzed in each study (these exposures took place years earlier). Seven fact sheets were prepared to communicate study findings to all living workers in these investigations. The fact sheets typically consisted of the following sections: Summary, Why we did this study, How we did the study, What we found, What you should do, and additional information about NIOSH and the Centers for Disease Control and Prevention (CDC). The fact sheets used in this study were mailed prior to the focus group as drafts. In each focus group, the facilitator explained that workers’ input would be used to revise the fact sheets and to improve future communication efforts. Occupational exposures to PCBs and ionizing radiation have different historical and political contexts. The work environment of PCB workers may be considered as a typical occupational setting where exposure to hazardous substances occurs: Workers were employed by private companies; at the time of exposure, the risk was not well known; and workers were not specifically aware of their exposure. In contrast, many workers who were exposed to radiation were aware of its potentially hazardous nature, and they wore dosimeters to record their exposure. Moreover, the workers in the radiation studies worked at facilities processing uranium for the U.S. Department of Energy during the cold-war era, and thus they 1 Findings from these investigations were published in seven scientific journal articles (Prince et al., 2006; Ruder et al., 2006; Schubauer-Berigan et al., 2007a, 2007b; Silver et al., 2009; Steenland et al., 2006; Yiin et al., 2009). Of the four PCB studies, one focused on breast cancer (Silver et al., 2009), one on neurodegenerative-disease mortality (Steenland et al., 2006), and the rest on all-cause mortality (Prince et al., 2006; Ruder et al., 2006; Steenland et al., 2006). Of the three radiation studies, one focused on mortality from multiple myeloma (Yiin et al., 2009), and the other two on mortality from leukemia (Schubauer-Berigan et al., 2007a, 2007b). For the breast cancer investigation, NIOSH researchers asked former workers to complete a questionnaire between 1998 and 2000. The mortality investigations were conducted using existing records only. All but the breast cancer study found that occupational exposures to PCBs and radiation were associated with adverse health outcomes.

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considered themselves as serving the country, contributing to the national security. Despite these different contexts, both exposures prompted strong advocacy movements. Environmental advocacy groups have been demanding responsible cleanup of contaminated areas (e.g., http:// www.scenichudson.org/ourwork/publicpolicy/pcb-cleansup, http: / / www.hanfordchallenge.org/ the- big- issues / cleanupprogress). Radiation-exposed workers have formed organizations to help former workers file claims for a federal compensation program. Some workers whose claims were denied have filed lawsuits against the compensation program. Workers’ comments in the analysis section reflect these contexts. Table 1 summarizes the exposure, health outcomes, and major research findings for each focus group. Data were collected in seven focus-group interviews: Four were with workers exposed to PCBs; the other three were with those exposed to radiation. In total, 55 workers participated (Table 1). Focus groups (FGs) were conducted in four locations: Massachusetts (2 FGs), Indiana (2FGs), Washington (2 FGs), and Tennessee (1 FG).2 Each focus group lasted 75 to 90 minutes and participants were compensated for their time and travel. The focus-group interviews were audio-recorded after informed consent from all participants was obtained. The recordings were then transcribed verbatim, with all identifying information removed. The first author is a university professor with a background in qualitative and critical approaches to health communication, and the second author is a NIOSH researcher with a background in social sciences and qualitative research. These authors engaged in an inductive, thematic analysis of the transcripts. After an initial reading of the transcripts, we sought to understand why workers resisted moderator questions, and what kinds of stories and concerns they expressed instead. Following a constant comparison method (Charmaz, 2002; Strauss & Corbin, 1998), the two authors read through the transcripts several times, and then independently identified themes in each focus group as they related to worker perspectives about health and science. Themes (ranging from 15 to 20 in each transcript) were combined to create larger categories. These codes were used to refine our major themes and subthemes in an iterative process. We found that worker statements, questions, and stories that were repeated across interviews or elicited longer and/or emotional narratives fell into three major areas: the role of expertise, understandings of health and epidemiology, and 2 In

Massachusetts and Indiana, randomly selected former workers of the manufacturing plants that used PCBs (n = 200 in Massachusetts, n = 160 in Indiana) received an invitation letter for a focus group. Follow-up phone calls were made until 32 former workers agreed to participate in four focus groups. Of those, 29 actually participated (Table 1). In Washington and Tennessee, where radiation study focus groups were conducted, participants were recruited through the local United Steel Workers union, the Center for Construction Research and Training, and the Building Trades National Medical Screening Program. Twenty-six nuclear facility workers participated in three focus groups (Table 1).

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ZOLLER, FUJISHIRO, MOBLEY, LEHMAN TABLE 1 Descriptions of the Focus-Group Interviews FG1

FG2

FG3

FG4

Location Date conducted

Massachusetts April 23, 2009

Massachusetts April 22, 2009

Number of participants

9 (all women)

Indiana September 29, 2009 5 (all women)

Indiana September 30, 2009 8 (5 men, 3 women)


Exposure

7 (3 men, 4 women)

FG5

Polychlorinated biphenyls (PCBs)

Washington December 8, 2009 9 (all men)

FG6 Washington December 9, 2009 8 (5 men, 3 women)

Breast cancer incidence

Mortality and causes of death

Major findings

No increase in breast cancer incidence associated with PCBs

Published study on which the fact sheet was based

Silver et al., 2009

• Deaths from brain cancer • Deaths from leukemia was associated with PCBs associated with radiation • Deaths from myeloma and exposure cancers of liver, ovary, prostate, and stomach associated with greater exposure to PCBs • Deaths from some neurological diseases associated with PCBs among women Prince et al., 2006; Ruder et al., Schubauer-Berigan et al., 2007a, 2006; Steenland et al., 2006 2007b

ANALYSIS: WORKER PERSPECTIVES AND THE SCIENTIFIC PARADIGM FG facilitators asked workers how the fact sheets could convey a “clear” message linguistically and graphically about the study, risks, and recommendations. The transcripts show that workers commented on the content of the notification as well as its “packaging.” They narrated their own experiences as a way to make sense of the research, establish their own forms of experiential expertise, and challenge the political dimensions of risk depictions. In this analysis, we describe how workers constructed and negotiated expertise, questioned epidemiological perspectives on health, and

Tennessee February 25, 2009 9 (8 men, 1 woman)

Ionizing radiation

Health outcome

the value and purpose of the occupational research. The first author further coded participant comments in the transcripts to develop subthemes within these areas. The second author checked these codes for fit between the statements and their categorization. We provide examples from the transcripts to illustrate the interpretive claims in each section. The subthemes are represented in subheadings in the analysis section. Because of the contextual differences among the focus groups (as mentioned earlier, including research focus and work settings), comments are identified by the focus group in which they took place. A limitation of this data is the inability to check interpretations with research participants, whose identity is anonymous to the authors. However, the depth of comments and repetition of major themes lend confidence to our analysis.

FG7

Mortality from leukemia

Mortality from multiple myeloma • Deaths from multiple myeloma associated with uranium exposure

Yiin et al., 2007

interpreted the goals of the research in ways that demonstrate the value of more participative understandings of science communication. Worker Perspectives on Knowledge and Expertise These interviews represent a struggle between two different bases of knowledge—scientific and experiential. Participants engaged with science in different ways, but they often resisted the implied relationship that situated them as nonexpert recipients of scientists’ expertise. Understanding of Science As commonly expected by scientists, some focus-group members felt that the scientific language of epidemiology was not at their level of understanding or relevant to their lives. For instance, one participant commented on an image of the chemical structure of PCBs on the notification. “I have no idea what that means. . . . See, something like that doesn’t mean anything to us. If you were a chemist, maybe, or a doctor, but it isn’t important to us” (FG3). However, these comments were also relatively few and isolated. More often, comments in each focus group questioned the fact sheets and the research itself based on the workers’ own scientific understanding. For instance, one participant proposed an alternative interpretation for the study findings: “And it seems odd that in Indiana they specifically had this type of cancer [i.e., brain cancer]. In New York and Massachusetts they found prevalence in other areas



[of the body where cancer developed, e.g., liver, prostate, stomach], and yet we’re talking about contact with the same materials. So some of them might have to do with the [geographic] area?” (FG3). Others challenged the logic or purpose behind inclusion criteria for the study. In FG6, a participant observed: Well, I don’t understand what they’re talking about here. It said, ‘A review of the death certificates indicated that 257 of 94,517 workers at these facilities died of leukemia; 8 of the workers were not included in the study, because it was not clear what type of leukemia they died of.’ They still got leukemia. That’s like the study that they had on the bypass—the highway up here—that said that 87 percent of the people are going at the speed limit or above the speed limit. Well, I mean, what kind of study is that? [Laughter] It was a big deal in the paper that 87 percent of the people are following the law and not following the law. (FG6)

Although the participant framed the statement in terms of his lack of understanding, the comment itself questioned the way decisions were made on important elements of the research. Workers also questioned the interpretation of findings based on sample sizes. In FG1, a participant responded to a description of the study: This information here, ‘A small number of non-white women who worked at these plants. When studying a small number of people, it’s possible that the results are due to chance. If more non-white women worked at the plant, we still found a higher’—that’s useless information. . . . What it says is that basically the numbers weren’t big enough for you to come up with a realistic figure. There weren’t enough non-white women working there for you to have an accurate figure.

In sum, the focus-group data revealed contrasting reactions to scientific information. Some felt that scientific details were overwhelming, but others had their own basis for understanding scientific logic. At times they may have been misguided, but when they did not see the logic within their understanding of science, they tended to dismiss or discount the information. These contrasting reactions demonstrate the difficulty of communicating research findings and the need to segment audiences into those who want “topline results” in very plain, everyday language, and those who want a more detailed accounting. Workers as Experiential Experts

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wondered if it was because—because I worked right with that stuff as it was in its liquid form, and then turned into solid and was baked into the oven, you know? I’ve often wondered, but I don’t have any way of knowing for sure.’ Participant: ‘I remember that [worksite] had a lot of people with rashes and skin problems in people who were handling that liquid, and I wondered about that.’

When asked about the fact sheet’s description of the research sites, a worker in FG5 instead talked about his job experiences. I was even on call. They’d call me in the middle of the night . . . I don’t know whether you knew that, but they had troubleshooters . . . Some of that stuff was really hot, and some of it you could only work in it for maybe a minute, but we did go to every area. It didn’t make a difference whether it was 243-5 [worksite] or 303 [worksite].

Although the fact sheet described the worksites (location etc.) as the scientific context of the study, workers shared stories that constitute the lived contexts through which they interpret the study data. A relational communication perspective highlights how they established themselves in the focus group as experts who have the firsthand knowledge of what it was like to work there, rather than as recipients of scientific expertise. Some workers used these experiential observations to reject scientific explanations. For instance, when asked about a graph of who participated in the study, a nuclear worker from FG5 said: I can’t even figure it out, to be truthful about it. I know guys that died from too much radiation, but I don’t know whether they died from leukemia or not. I don’t know what got them, but I know that they had too much radiation.

Scientific practice of separating exposure (i.e., radiation) and disease (i.e., leukemia) did not fit this worker’s experiences of radiation’s effect. Many participants questioned elements of the research based on their experiential knowledge. For instance, some questioned whether researchers could estimate risks accurately because they believed scientists lack the experiential knowledge of the jobs that workers have. An FG6 participant suggested, when asked to comment about whether the fact sheet should contain an “FAQ” heading: You’ve got people that are book smart but not job smart. They don’t know the job; they don’t know the risk, and they don’t have any idea what [a worksite] is, or [another worksite] or [a third worksite] that are making these life and death decisions.

Other workers responded to the fact sheets with different forms of knowledge based on personal experiences. Consistent with Fisher (1984), these participants supported their questions and observations by narrating their own experiential knowledge of illness and workplace processes. For instance, two FG2 members talked about their concerns that working with PCBs caused their illnesses:

An FG5 member observed that different experiences between workers and scientists might prevent accurate data collection.

Participant: ‘Well, and I’ve had kidney cancer and had to have my left kidney removed, and I’ve wondered. I’ve often

That’s always kind of stuck in my craw with dealing with OSHA and some of the people that they had in there. They

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were college educated, never been, you know, in the environment that we worked in, and yet they’re trying to visualize what this is. Well, are they getting the proper information, or are they getting a bunch of smoke blown at them?

Although the scientists involved in this research would disagree with this characterization, it is important to understand the underlying desire employees express to see their own forms of expertise reflected, or at least acknowledged, in the research process. Multiple workers questioned whether scientists could accurately measure actual exposures because of poor record keeping or lack of access to information. This was more prominent in the radiation focus groups than in the PCB ones. The radiation workers may be motivated to question the exposure data because they have monetary compensation at stake. The moderator asked whether an FG7 participant questioned the findings as a matter of belief or understanding: It [the fact sheet] says, ‘Using work site records.’ Well, did you ask how much uranium these workers were exposed to, compared to the other workers? Are you kidding me? You’ve got records. How much of your records did you have? How could you use records to come up with a dose reconstruction of how much radiation?

Workers drew from their material experiences to question the accuracy of recorded exposure data. A participant in FG6 shared this during the introductions: The day that I got poisoned the first time was March 3, 1990. . . . They put me in the dispensary and kept me four days and four nights on oxygen. All my record says, and I have it so I can prove it, is, ‘He slept well; he eats well, and his wife comes to see him once a day.’

Later in that interview, a participant described multiple exposures in one incident. “It never showed up, because I tried to get those records. They never wrote it down.” These examples suggest that some workers are uncomfortable with scientific explanations that do not appear to have a basis in experiential expertise. Moreover, worker narratives rejected the implied authority relationship of scientific expertise and established themselves as experts who really knew what it was like to work with hazards. Workers had knowledge of work processes and hazards management and believed that these issues were not reflected in the research design. The notification fact sheet therefore provoked much skepticism disguised in questions. Describing how exposure was estimated, which typically involves site visits and interviews with key informants in early phases of the study, may reduce skepticism.

Worker Perspectives on Epidemiology and Health Risks Focus-group participants asked questions about risk and exposure that could not be answered by the studies being reported. Concerns about environmental exposure and some contradictory beliefs regarding occupational and environmental exposures are reported elsewhere (Fujishiro, 2013). Here, we suggest that sharing these concerns did not represent a failure to understand the research, but rather different underlying theories of health and illness causation from epidemiological conceptions, based on workers’ life contexts. Community Health Concerns The draft fact sheets focused exclusively on worker exposure in the workplace, but many participants, especially PCB-exposed workers, drew from more holistic approaches to health risk that expressed concern for the community. These workers’ environmental health perspectives led to frustration with the design of occupational cohort studies. For instance, when FG3 members discussed the study design, a participant observed that when her mother was dying of leukemia at the hospital, There were quite a number of people dying from this same leukemia. I’ve always thought that it was because she was so close [to the workplace]. I’ve always thought that, but I don’t have any proof. That would be interesting to have some information about just the surrounding area.

Another participant in FG3 suggested that notification should include neighbors. Now, would this study affect the people that live within a certain radius of the plant also . . . I would want to know that there’s a possibility just from living within a certain radius of this building that I could have been exposed to it, you know?

An FG1 member observed that future studies, not just notification, should address community exposures. But if you’re studying the building you worked in, you’d think that the whole area would be studied, you know? Whatever was coming out of that building must have affected everybody in the neighborhood and everything.

Participant comments suggested the distinction between occupational and environmental health is arbitrary. Participants expressed concerns about where the toxic chemicals were stored. A worker in FG3 observed: “And now they find that under the ground there’s bad chemicals . . . and this is where our children are going to school.” Later in the discussion, a participant requested more information be placed in the study conclusions section: Then there were a lot of kids coming down with leukemia, you know? Looking at the connections between where the



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PCBs were dumping and the areas, I’d like to see some statistics on that as well because it didn’t just affect those working at the plants.

they’re speaking specifically of only deaths, but isn’t it also important to know how many people actually contracted any of these and were living through it, you know? (FG3)

Reflecting a biographical understanding of health (Brown, 2007), workers talked about ill people they knew and observations of high incidence of illness, and called for a link between this research and efforts to clean up the community. In addition to environmental effects, workers wanted to know about potential risks to their children and family from workplace exposures. In FG3, a woman noted when she first looked at the fact sheet: “Now, there’s no mention about our children. . . . Would that not affect maybe your children? I was pregnant when I was working there.” Women whose children had health problems wanted to know more about potential linkages. “Before my first child I had a miscarriage, but my first child was born with an open spine. You wonder if all of these things were [related].” (FG1). A participant in FG4 added:

Workers wanted to know how exposure would affect their lives and not just mortality rates. When the FG4 moderator asked if the sheet described study methods clearly, this discussion ensued:

I think there was a higher amount of miscarriages when I worked at [worksite] than in the general population. It was very common to get pregnant and miscarry within the first two to three months. I mean, they used to laugh and say that it was in the water. If you got pregnant you’d probably lose your baby if you worked there, and it happened all the time.

Questions about health effects included genetic changes: “How it affected their children, you know? What did they pass down? That’s what I want to know” (FG2). Workers inquired about how “take-home” exposures might affect their families. An FG5 member suggested that spouses were exposed: From taking his dirty clothes out and washing his shirts and stuff with the chemicals on them. I’m being tested for leukemia. . . . .We just wondered if there are going to be women, if the wives are going to be included in some of these studies.

These questions reflect the contextualized, relational understandings of health that workers bring to their interpretation of notification material. Addressing all of these concerns may not realistically belong to any specific notification program. Rather, finding ways to address health in a holistic way may entail interdisciplinary and interagency approaches to health and environment research and education, in both the community and workplace. Multicausality and Risk Profiles In addition to holistic approaches to exposure, workers also challenged epidemiological reductionism in understanding health effects. Participants questioned the relevance of fatality data because it overlooked the potential nonfatal illness they might experience; for example: But wouldn’t that also be relevant, the people who had cancer and recovered or had treatment and recovered? I mean,

Participant: It says you looked at the causes of death and the associated levels of PCB exposure, but what about just health problems instead of just death? When I look at the health problems that everybody that’s been in there has, but what common denominator do we have there? I’m sure that a lot of us have the same illnesses or the same problems. Participant: And after death we don’t care anymore. Participant: Yes, who cares then, you know? [Group laughs] You’re just a statistic then.

Participants questioned the accuracy of death certificates, often based on personal experience. Two nuclear workers in FG5 recounted: “I remember our friend, he passed away. The last day he had a heart attack and he passed away. That’s what the death certificate said.” Another participant added a similar story. Their questions about the validity of death certificates as a data source led many workers to discount the studies themselves. When asked if participants would read notification material if sent to them, one worker responded, “If the study was based on information from death certificates, then I don’t believe it” (FG7). When research investigated incidence of illness rather than deaths, participants questioned the focus on single diseases. Focus-group members in breast cancer studies wanted to know why the research was limited to a single form of cancer. It seems like there were people there that died from other cancers . . . my own father-in-law worked there. He retired, and he died of—he had colon cancer, and then five years later it turned into bladder cancer, you know, and so I wonder if that had anything to do with it. (FG2)

Another woman asked, “Why does it [the study] only cover breast cancer?” The moderator clarified twice that this study focused only on breast cancer. Because I’ve had skin cancer from the time that I worked there. Now, I just got over lung cancer . . . But that would be interesting if everybody who’s had some type of cancer in this room . . . but of these nine women, it sounds like about five of them have had some kind of cancer and not just breast cancer. (FG2)

A PCB focus-group member stated, “If you listed everything that PCBs affect, then it would probably help everybody” (FG4). Many participants wanted to understand the intersection of exposures to multiple occupational hazards with multiple potential health effects. A member of FG5 about radiation asked:

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Also, I wonder where mercury came into this, you know? We had mercury manometers a lot then. We’d eat our lunch in there in the shop. There would be mercury beads running all over the table, you know, and no one had any concern about it and whether that has any real bad effect or not.

A PCB participant concurred:


All toxins when they enter your body, though, have an effect on your health somewhere. I would say that there were toxins all over that plant. . . . You’re talking about all of these toxic things in the plant—asbestos. Everything was toxic. (FG2)

Workers also observed that when the research did address multiple risk factors it was often individual factors such as smoking, rather than other workplace exposures. For instance, a participant wanted to know how radiation exposure was affected by chemical exposures: “Yes, they’re bringing in smoking and things like that, but what about the other chemicals? That’s what gets me” (FG5). A participant in FG1 asked, “What’s alcohol got to do with PCBs, if you drink a lot of alcohol? I don’t drink, but I’m just curious.” Some participants did want to understand how individual factors interrelate with the workplace exposure. For example, interviewees asked whether the study addressed how the age at the time of exposure might affect their chance of a breast cancer diagnosis, how individual weight affects one’s chances of getting cancer, and whether sunbathing and chemicals in consumer products would affect their risks. A few workers argued that the research may be exaggerating the risks of occupational exposure because individual factors such as genetics or lifestyle trump workplace exposures. Commenting on the conclusions in FG3, a participant said, “You’d be surprised. I have a lot of friends my age who worked at [worksite] longer than I did, and they’re still alive” and another responded, “So there you go. PCBs couldn’t have been all that bad at that time. It’s actually your genes. If you’re good to your body, you live a little longer; if you’re bad to your body, you’re gone.” FG2 participants discussed the role of genetics. “Yes, because if your grandpa has got it and your mom and dad got it, and you got it, then it’s pretty much genetic.”A debate about illness causation developed in that group: Participant: You know, I don’t think that PCBs, though, caused my cancer. I think I’ve gone through it twice now, you know, and recovered. I don’t know, I just think that it’s in the family. My mother died of leukemia; my dad of lung cancer, two sisters of lung cancer—one colon and one lung—and the whole family. It’s in the genes, and so I wouldn’t blame PCBs at all. Participant: I can tell from my personal experience. I have a neurological disorder, and toxins can cause neurological disorders. I can tell you that for a fact.

Together, the comments demonstrate the difficulty for audiences of receiving isolated information about risks even

though isolating effects is often the way scientific knowledge is built. These comments also illuminate how workers’ own experiences of health and illness influence their interpretation of risk information. Workers wanted study designs that reflect their lived experience. This is not always possible, but as we discuss in the conclusion, acknowledging these differences and attempting to bridge them may help improve the relevance of research notification to study participants. Worker Perspectives on Notification Purpose, Value, and Efficacy The focus-group data suggest that scientists and workers may differ in their orientation toward research and notification goals. We should consider the social and historical contexts in which notification material is interpreted, as well as differences in the way scientists and workers construct the utility of research and notification. Perceived Benefits of Notification Despite many questions about research methods, in all of the focus groups, some participants expressed appreciation for the study information. These participants were eager to understand more about their potential health risks. A woman in FG2 observed when asked about her overall impression of the fact sheet, “When I got it, I couldn’t wait to read it. I didn’t realize it was a draft . . . I thought oh, my gosh, this has got the greatest information.” Some focus-group members suggested that other workers would be eager for the information as well, particularly those who had experienced illness. “I think that everybody has been touched by cancer in some way. Anything that has cancer on it, people will read it” (FG1). Another FG1 participant said, “Once you’ve had breast cancer or any type of cancer, when you see that word you’re going to read it. I know that I do; I don’t want to miss anything that says anything about cancer.” Other members of that focus group suggested that placing the fact sheets where women get mammograms would reach former workers not reached through standard notification efforts. Informing doctors was mentioned as a valuable function of the notification. A worker in FG4 said, “I think that people ought to take this to their family doctor and let their doctor read it,” and another added, “I think that you need to make your doctor aware that you have been exposed.” Some focusgroup members expressed hope that the research would help prevent or reduce illness among former, current, and even future workers. Sharing information with doctors may not help the individual but could help others: They need to know this information. Even when you go to the doctor and they ask for your medical history, they’ll ask if you have been exposed to this and this and this. By saying that yes, I was exposed to this, they can put that down and maybe there’s a correlation down the road where they can


treat other people. I think that this is very important for the future—maybe not for us, but maybe for the future. (FG7)

This comment clearly acknowledges the value of epidemiological research to a larger population. A worker in FG5 felt that the notification sheets would help build awareness:


You can also inform some of your coworkers that they haven’t had a chance to follow up on their screening and to get involved and to find out what’s going on. A lot of people, they have no idea about it. They’ve got to get involved in it. That’s the message that I’m going to take home. Yes, you guys are doing a good job, but also I want to inform the others.

Another participant added, “I think that we’re learning from those mistakes in the past so that in the future people will be more protected.” A participant in FG7 said, “The reason that I’m so passionate about doing the [safety] training is the knowledge . . . I don’t want to see the young guys with the thyroid dysfunctions, you know, and wearing respirators.” Later in the exchange, a participant added: Yes, we don’t want another generation, this clean-up generation. We don’t want them to be exposed to what we were exposed to as operators. . . . Let’s make it safe for them and you won’t have to have these meetings when you’re my age.

A participant in FG3 said that the most important result of the research should be: You have to close down plants. You can learn from this, and I think that this is very important concerning the people that work there. I really appreciate this, and I think that it’s very important. There is a ban on PCB production, and it’s only because those things exist.

A few workers also said that a benefit of the notification was that they felt supported by researchers. For example: I think that people will feel that there is still a concern that if I felt like I had breast cancer from [worksite], I’d feel comforted that somebody cared enough to put together a study and keep looking, you know, and felt like I wasn’t forgotten. (FG2)

An FG5 participant said the primary take-away message is that “Somebody cares.” This reinforces a view of notification as a relational process, one with opportunities for trust-building. Barriers to Perceived Notification Benefits The worker comments in the preceding suggest that many workers appreciate the research and see value in learning more through notification as a way to protect their health and prevent future illness for communities and next generations of workers. Worker comments also detailed potential barriers to using notification to protect health.

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Some workers expressed a lack of interest in worrying about illness risks. A few participants stated that they would not read the fact sheets if they had been sent in the mail. Someone in FG2 said, “I don’t know why anyone would want to read it. I mean, I really don’t. I mean, if you don’t have cancer, or even if you had it.” A worker from FG4 expressed a sense of resignation or a “release” approach to health (Crawford, 1984): I think that you could make yourself sick by going and looking all of this stuff up. You could, you could drive yourself nuts. You know what . . . You’ve been exposed; you have maybe a little higher chance or risk, but you know what? You can’t worry about it; live for today, because tomorrow you might not see.

Others found the information not specific enough to be personally relevant to them. Many workers believed that exposure varied by the job or department. A participant in FG4 about PCBs explained, “If you worked on the fill and solder side, believe me, you got well exposed. . . . The people on the fill and solder line probably got a lot more than most people.” It is not surprising that many workers wanted notification material to be tailored to their exposure. When the moderator in FG1 asked about the “What We Plan To Do Next” section, a participant responded: “I just hope that in the next study you will put numbers on the area where there were more workers diagnosed with cancer.” An FG3 participant asked during discussion of study design, “Also, if they could list the departments that seemed to be of a higher risk . . . that would give everybody a better idea of where they stood with this.” If more specific information were available, workers would experience less uncertainty. Some participants wanted more explicit instructions about what to do with the study findings. “What should we do if we felt that we were ill, because of PCBs in the work that we do? What should we do? There’s nothing in there that says, you know,” and the moderator prompted, “You want more specifically what you should do if you feel . . . ?” “Yes, that I’ve been harmed working with these chemicals. Now what should I do?” (FG1). One worker suggested including: “If your young ones are going to be affected by your situation, what can be done about it?” (FG3). Several workers suggested that the notification would not change their existing medical approach. The participant from FG4 clarified why the information was not helpful: But see if I had symptoms, I’d go to the doctor and he’d give me tests for that and I’d know what I have, because there’s no way that you’re going to prove that PCBs did it, or if they didn’t. So if you have a disease, you go to the doctor and you get your treatment and you move on.

It would benefit workers if notification clarifies the study’s implications for health protections. As described earlier, some participants felt that it was beneficial to include physicians in the notification process;

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other workers depicted physicians as a barrier to using the results to treat or prevent illness because many doctors are not familiar with or concerned about occupational hazards.


Yes, sharing this information with your health care provider. What are you talking about? My insurance agent, or the doctor? I mean, you’ve got to have a doctor that understands what radiation is. Most general doctors around here don’t got a clue what it is, especially if they’re not from this area. Even those that are from this area don’t. That’s why we have to go elsewhere to get good help. (FG6)

Many participants expressed agreement, and the moderator tried to clarify whether the workers would share the information with their physicians. “Well, you can share it with them, but it’s like talking to that wall over there. I mean,” and another participant interrupted to say, “The first thing that he’s going to say is did you smoke all of your life? That’s exactly what they’re going to say.” Others added, “Yes, did you eat chocolate all your life and drink pop?” and “Use spray deodorant?” These comments illustrate the need to educate health care providers about occupational hazard exposures (Waitzkin, 1991). Consistent with existing literature (Acquavella & Collins, 1993), some employees questioned the benefit of notification because it comes too late. An FG3 participant asked why employees did not receive information about potential risks while still on the job. I mean, don’t you feel that when you were working as much as you were—don’t you think that this study should have directed you to seek medical attention? Don’t you think that there should have been a follow-up for a person like you who was physically in it up to their elbows?

A worker in FG7 added, “There’s nothing in there that would make me want to read it. $150K we’re talking about? I don’t want $150K [as compensation]; give me my lungs back. They can’t give me my lungs back.” Several workers found scientifically cautious language in the notification materials confusing. Some felt that the conclusions of the study were not specific. So why doesn’t it say that these studies show that there’s a prevalence of cancer with the people who were working directly with PCBs, or exposure to PCBs or something of that type rather than this general statement? Like you’ve read all of this, but it doesn’t prove anything. I mean, it should have proven something. (FG3)

An FG1 participant said: But what I don’t understand is why they keep saying, though, that the more PCBs you’re exposed to the more your chance of getting breast cancer increased. Then in the overall survey they’re saying that they don’t believe that it is related, so it just seems to contradict.

These comments indicate that workers expect science to provide a definitive answer to the cause-and-effect of their exposure and illness. Reflecting the political role of communication in constructing and managing conflicting interests, some participants voiced skepticism about whether the notification was supposed to help workers or protect employers from responsibility. Several FG3 participants commented on the vague language used in the fact sheet such as “might” or “may be associated with.” One participant added: I don’t know. It makes me think like not taking responsibility. You know what I mean? Like you don’t want to say that ‘yes, this is it’ because then people might say that well, okay, I got in trouble from like what you’re saying.

Uncertainty is inherent in epidemiologic investigation, and scientists have developed systematic ways to handling uncertainty (e.g., statistical significance, population estimate) that are acceptable to a scientific audience. Ironically, because scientists have been dealing with uncertainty so systematically, the discourse appears to communicate a sense of certainty about findings. This general scientific discourse leads workers to expect a verdict; when it is not given, workers express frustration and speculate on motivations behind the cautious language. A participant in FG2 asked in frank terms: I just wanted to ask something; have there been lawsuits filed against the plants? . . . Okay, what we found is almost like let’s keep [the company] from having lawsuits filed against them by declaring that there is not a likely risk in breast cancer with increasing PCB exposure. It’s almost like their Centers for Disease Control is working with [the company] to prevent lawsuits.

At times, mistrust of the government and the study itself resulted from workers’ previous and current experience with government agencies. Some workplaces involved in the studies were the targets of lawsuits or governmental settlements, and a few participants focused on the notification’s impact on their legal claims. For instance, a nuclear worker in FG5 questioned which sites were included in the study. “It makes you wonder if they do that just so that they can narrow their claim deal down.” This relational and political issue of trust extended to concerns about the purpose of the focus groups. One FG5 participant asked pointedly: My question is these little groups that you’re having . . . are they taking this information that they’re getting from us and justifying the survey that they’ve done, or are they going to utilize it to improve the surveys in the future?

In sum, some participants appreciated the research being done and were willing to provide information, if not to improve their own health, to protect others, especially future generations. Notification programs can capitalize on workers’ appreciation for research in order to make


notification more meaningful to them. Conducting worker notification, however, should also engage with workers’ reactions that reflect disinterest and mistrust. As we discuss in the conclusion, nurturing rapport with workers before, during, and after research may help develop positive relationships between scientists and workers that encourage employee health protection.


CONCLUSION: RECONCEPTUALIZING RISK COMMUNICATION IN PARTICIPATORY TERMS The use of focus groups introduces two-way communication that improves the readability and relevance of risk communication materials. This analysis suggests that the value of research notification would be further improved by shifting the focus from translating science into lay language to a relational approach that promotes some degree of dialogue in the scientific process. We conclude by discussing how more robust theories of communication could improve science communication processes. First, focus groups facilitated in-depth understanding of audience interpretations of the studies. Differences among workers who wanted more detailed information and those who felt the information was too complicated or irrelevant reinforce communication theories that interpretation depends on levels of interest, motivation, fear/concern, and even different types of processing (Powell et al., 2007; Witte, 1992). This reinforces preliminary research that suggests face-to-face or conference-call notification is preferred to fact sheets, when the number of participants makes this feasible (Baylor et al., 2013; Dorsey et al., 2008). Differing levels of emotional reaction signify the importance of addressing audience contexts (Turner et al., 2011). Second, the interactional perspective of Watzlawick, Beavin, and Jackson (1966) sensitizes us to the ways that participants resisted the implied relationship in scientific communication that frames scientists as the only experts and participants as lay audiences. Our focus-group participants narrated their own forms of expertise based on their lived experience. Though the transcripts showed frustration among moderators at what may have seemed like irrelevant stories, workers shared important insights about their everyday job experiences, community exposures, and the health care community that may affect their health. This narrative rationality was used to evaluate notification materials (Fisher, 1984). Workers narrated both experiential and scientific concerns with the research process itself (data gathering and analysis), rather than restricting their comments to the fact sheets alone. Participant comments demonstrated that being approached only after studies were completed, which indicated their experiential knowledge was not reflected in the research process, was frustrating. Workers expressed skepticism toward the validity of the findings and toward the

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motivation of the research itself. Therefore, to maximize the effectiveness of risk communication for both participants and researchers, researchers should explore ways to engage study participants throughout the research process. Third, these transcripts demonstrate the significance of understanding how audiences conceptualize health, and how those conceptualizations may differ from epidemiological approaches. Defining health and attributing causation for illness is a process of social construction (Kirkwood & Brown, 1995; Zoller, 2012). If one goal of risk communication is to prevent illness, education efforts should connect with audiences’ perceptions of health. This study highlights the challenge epidemiologists face: When research demands isolating exposures and health outcomes, how can the results be communicated in ways that resonate with the target audience’s more holistic concerns? Participants in this study wanted to understand how multiple workplace exposures and illness risks interrelate in their everyday lives, which include lifestyle and environmental factors. There are several avenues researchers can pursue to address this challenge, including contextualizing the results of individual studies with other research findings. It would also help to prioritize, when possible, dialogue between scientists and the target audience about larger questions of health. Allowing audiences, or representatives, to ask questions, share knowledge, and state concerns throughout the research process would help the research meet the audiences’ needs, and therefore produce results that are more relevant to workers. More broadly, researchers should develop alternative scientific methodologies that address health more holistically, including cumulative risk and exposure assessments (Corburn, 2005). Fourth, this study highlights what audiences’ value in risk communication. Not all focus-group participants believed that learning about increased risk from past exposures is valuable, and researchers have expressed concern that notification may put undue stress on the recipients (Race, 1993). However, many participants in these focus groups appreciated researchers’ attempt to communicate study results. Many of them cited improved knowledge and ability to protect health as a benefit of the research. Some participants wanted to share the information with health care providers and family members. Educating health care providers and other community members is an important way to help the audience use risk communication materials. Participants were hopeful that the information would help prevent illness for themselves but also for other current and future workers, their families, and their communities. Although much of the research notification literature emphasizes the goal of individual risk management (Turner et al., 2011), participants were interested in improving community health in addition to monitoring their own health, and see worker notification as potentially an effective tool. Fifth, science communication professionals should recognize that research contexts have a long relational history


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and may have involved conflicting interests. In the focusgroup interviews, some workers revealed that they interpret research in a context of mistrust. This was more strongly expressed in the radiation-exposed workers, which is understandable, given the history and current lawsuits over compensation; however, mistrust was also expressed among the PCB-exposed workers. By involving workers in research projects whenever possible, scientists could build trust with workers, which would ultimately improve the impact of research notification. Moreover, focus-group participants’ responses highlight the politics of representation, which is sometimes overlooked in the risk literature (Turner et al., 2011). Risk research is used to make claims about disease causation. This process can be controversial because establishing causation often leads to assigning responsibility for illness (Crawford, 1977; Kirkwood & Brown, 1995). This has implications for the public’s perceptions of those who are exposed to hazards, the distribution of resources for managing illness, and compensation for suffering (Zoller, 2012). Participants interpret risk communication material in light of this political context and are suspicious that the purpose of research is to protect government and corporations from lawsuits. Scientists tend to view their conclusions as objective, but the public often views scientific decision making as a political process, such as selecting health outcomes, choosing participants and comparison groups, and establishing levels of significance (Watterson, 1999). In order to establish trust and legitimacy, these choices should be clarified and accounted for with those whose health is being studied. We do not want to imply that participant involvement in scientific research is easy. Not everyone would be interested in engaging in the research process, and those who do want to be involved may need education about research limitations. In addition, consideration must be given to the increased cost and time commitment such approaches involve. Often there is political and community pressure to complete research studies quickly while keeping costs to a minimum. At the same time, scientists should be willing to recognize multiple forms of expertise and the utility of various types of data outside of traditional scientific discourse (Gwyn, 2002; Popay & Williams, 1996). Open opportunities for communication allow for discussion when limitations in study design or data quality develop, rather than waiting to the end of the study and provoking skepticism for the entire study findings. Such dialogue, in the case of occupational health research, would also require open discussion about past issues of mistrust. Inviting consultation, developing dialogue, and eliciting narratives requires skilled facilitation (Petraglia, 2009). Coconstructed and participative models of science go by many different names—the democratic paradigm (Brown & Mikkelsen, 1990), the socioparticipative model (Watterson, 1999), community-based participatory research (CBPR; Minkler, 2012), street science (Corburn, 2005), action research —but they all provide working

models for involving citizens in scientific research itself, such as developing research questions, determining methods, data gathering, mapping and assessing risks, and creating preventive policies. CBPR, for example, aims to “increase the value of studies for both researchers and the community” and “create bridges between scientists and communities through the use of shared knowledge and valuable experiences” (Viswanathan et al., 2004, p. 1). This study provides further support for funding agencies’ efforts to explore methods of promoting participatory research process. Although many difficulties in implementing participatory principles have not been entirely resolved (Cook, 2008; Viswanathan et al., 2004), a number of government agencies are promoting CBPR principles. The Centers for Disease Control and Prevention (CDC) funds 37 Centers for Prevention Research housed in universities throughout the United States, where CPBR principles are put into practice (http://www.cdc.gov/prc/aboutprc-program/index.htm). Similarly, the National Institute of Environmental Health Sciences, one of the National Institutes of Health (NIH), established the Environmental Justice and Community-Based Participatory Research Program as early as1995 in order to “promote[s] active community involvement in the processes that shape research and intervention strategies as well as in the conduct of research studies” (http://www.niehs.nih.gov/research/supported/dert/ sphb/programs/justice/index.cfm). The U.S. Environmental Protection Agency (EPA) funds 10 research centers specifically established to conduct CBPR. Some of the NIOSHfunded Education and Research Centers in 17 universities also promote the CBPR approach (e.g., the University of Illinois at Chicago). Clearly, a trend has developed to consciously involve research subjects in the research process. When informed by relational and interactional views of communication, these efforts will help us move forward in developing shared perspectives between scientists and those whose health is studied rather than translating information from one language to the other. Additional research should investigate the relationship between participatory approaches to research and research notification processes in practice. REFERENCES Acquavella, J. F., & Collins, J. J. (1993). Perspective on the content of worker notifications. American Journal of Industrial Medicine, 23, 77–83. Anderson, R., Cissna, K., & Arnett, R. C. (Eds.). (1994). The reach of dialogue: Confirmation, voice, and community. Cresskill, NJ: Hampton Press. Axley, S. (1984). Managerial and organizational communication in terms of the conduit metaphor. Academy of Management Review, 9, 428–437. Bakhtin, M. M. (1981). The dialogic imagination. Austin, TX: University of Texas Press. Barge, J. K., & Little, M. (2002). Dialogical wisdom, communicative practice, and organizational life. Communication Theory, 12, 375–397.


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Community participation in HIV cure research: perspectives from Thailand.

Advancing Partner Notification Through Electronic Communication Technology: A Review of Acceptability and Utilization Research.

Ganando Confianza: Research Focus Groups with Immigrant Mexican Mothers.

Focus on translational research.

Older Adults' Perspectives on Clinical Research: A Focus Group and Survey Study.

Novel legislation for pediatric advance directives: surveys and focus groups capture parent and clinician perspectives.

Patient participation groups.

Perspectives in research on adolescence.

Community perspectives on food insecurity and obesity: Focus groups with caregivers of metis and Off-reserve first nations children.

Deliberative Discussion Focus Groups.

Interleukin-21 and T follicular helper cells in HIV infection: research focus and future perspectives.

[T-groups: development, participation and goals].

Participation in action research.

Historical Perspectives on Flavivirus Research.

Patient informed governance of distributed research networks: results and discussion from six patient focus groups.

Focus groups as a qualitative method for crosscultural research in social gerontology.

Using focus groups in medical education research: AMEE Guide No. 91.

Analysis on evolution and research focus in psychiatry field.

Control groups in research.

Communicating about overdiagnosis: Learning from community focus groups on osteoporosis.

Research on Balint groups: A literature review.

Rethinking the discharge summary: a focus on handoff communication.

From Practice to Research: Training Health Care Providers to Conduct Culturally Relevant Community Focus Groups.

Interprofessional Perspectives on ABCDE Bundle Implementation: A Focus Group Study.