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© 2005 American Public Health Association
DOI: 10.2105/AJPH.2004.038349
RESEARCH AND PRACTICE |
Janice Blanchard is with RAND and George Washington University Department of Emergency Medicine. Yolanda Haywood is with George Washington University Department of Emergency Medicine. Bradley D. Stein, Terri L. Tanielian, Michael Stoto, and Nicole Lurie are all with RAND.
Correspondence: Requests for reprints should be sent to Janice Blanchard MD, MPH, George Washington University Department of Emergency Medicine, 2150 Pennsylvania Ave, NW, Washington, DC, 20037 (e-mail: jblanchard{at}mfa.gwu.edu).
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ABSTRACT |
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 TOP ABSTRACT INTRODUCTIONMETHODSRESULTSDISCUSSIONReferences |
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Objectives. We evaluated perceptions of workers at the US Postal Service Brentwood Processing and Distribution Center and US Senate employees regarding public health responses to the anthrax mailings of October 2001. We generated recommendations for improving responses to bioterrorism on the basis of the perceptions we recorded.
Methods. Transcripts from focus groups conducted with Brentwood and US Senate employees were examined, and qualitative analysis identified common domains.
Results. Brentwood focus groups consisted of 36 participants (97% African American and 19% hearing impaired). US Senate focus groups consisted of 7 participants (71% White and 0% hearing impaired). The focus groups revealed that participants’ trust in public health agencies had eroded and that this erosion could threaten the effectiveness of communication during future public health emergencies. Among Brentwood participants, lack of trust involved the perception that unfair treatment on the basis of race/ethnicity and socioeconomic status had occurred; among US Senate participants, it derived from perceptions of inconsistent and disorganized messages.
Conclusions. Effective communication during a public health emergency depends on the provision of clear messages and close involvement of the affected community. Diverse populations may require individualized approaches to ensure that messages are delivered appropriately. Special attention should be given to those who face barriers to traditional modes of communication.
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INTRODUCTION |
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On October 15, 2001, a letter containing Bacillus anthracis was opened at Senator Tom Daschle’s Capitol Hill office, triggering a series of events that revealed serious gaps in the nation’s ability to respond to bioterrorism. By November 20, 2001, 22 cases of anthrax had been identified in the United States, and a wide spectrum of individuals had been exposed in the Washington, DC, area.1 Although the first reports of positive anthrax exposures in Washington, DC, occurred at the Hart Senate Office Building, no actual cases were reported. The effect on the United States Postal Service facility on Brentwood Road, Washington, DC, through which the letter passed just days before it was opened, was more severe. Four cases of inhalational anthrax originated from this facility, resulting in 2 deaths. It was recommended that approximately 2743 people from the Brentwood population and 600 people from the Hart building take at least 60 days of antibiotic prophylaxis based on a presumed high risk for inhalational anthrax.2–4
Since that time, there has been much discussion about improving systemwide responses to bioterrorism. Recommendations have largely focused on surveillance for and management of biological agents, including medical treatment, containment, and decontamination.5,6 Few empirical data regarding communication with potentially exposed individuals have been provided.
This issue is critical. Effective communication during a public health emergency can have profound effects, ranging from increased compliance with recommended treatment to decreased development of long-term psychological sequelae. A basic goal of public health communication is to provide accurate, accessible information that establishes a bond of trust between those in a position of responsibility and those potentially exposed to a bioterrorist agent.7 This trust depends on perceptions of competence, objectivity, fairness, and consistency and on the general belief in the good will of those responsible for communication.8
The events surrounding the anthrax exposures required communication by various public health entities to a highly diverse audience during a period of sustained uncertainty. Screening and treatment recommendations changed as knowledge about the infection and its treatment evolved. Although the Daschle letter came through the Brentwood facility on October 12, Senate workers on Capitol Hill were initially thought to be the primary exposed population, resulting in rapid testing and prophylactic treatment of that population on October 15 (Table 1
). Medical and public health agencies did not immediately recognize that fatal doses of anthrax could disseminate through unopened envelopes, resulting in little initial recognition that postal employees might also be at risk.1 Thus, workers at the Brentwood facility were not screened or treated until October 21, after anthrax cases had been confirmed in their coworkers. By that time it was recognized that all employees from the Brentwood facility would need postexposure prophylaxis; nasal swabbing for diagnosis was felt to be both unreliable and unnecessary.9,10
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Intense media coverage highlighted the delays in testing and treatment of the Brentwood workers, often making references to race and socioeconomic status; approximately 92% of Brentwood’s employees were African American, as opposed to the predominately White staffers of the US Senate.11,12
Following the initial diagnosis, employees at both facilities who were deemed to be at highest risk received prophylactic antibiotics for 60 days. Subsequent recommendations for postexposure prophylaxis extended the suggested length of antibiotic prophylaxis to 100 days or receipt of a vaccine, classified as investigational, to further reduce the chance of acquiring inhalational anthrax.13 Antibiotic adherence was similar at both sites, with 64% of Brentwood and 58% of Senate workers completing at least 60 days of antibiotics.3 However, the 2 groups differed sharply in their response to the vaccine recommendation. Thirty-eight percent of high-risk Senate workers chose to receive the anthrax vaccine, as compared to only 2% of Brentwood workers.14
To date, there has been a paucity of information about how individuals exposed to anthrax perceived and responded to public health information, or how this may have affected subsequent health behaviors. There has been even less focus on communication with particularly vulnerable groups, such as African Americans or those with hearing impairments, both of whom are disproportionately represented in Brentwood’s population.15 We studied the experience of Brentwood and Senate employees in order to better understand, from the perspectives of those affected, their response to these events. Our goal is to generate suggestions for improvement that will help improve communication during a public health emergency.
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METHODS |
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We conducted a series of 2-hour focus groups to gather detailed, qualitative information about the events surrounding the anthrax exposure. At Brentwood, focus groups were scheduled to accommodate all work shifts. Because postal facilities typically employ a relatively large number of hearing-impaired individuals, we included a focus group composed primarily of persons with hearing impairments. Attendees were recruited from flyers distributed at labor union meetings and posted at local facilities and through a local support group. In addition, we conducted a focus group of Senate employees from the Hart Senate Office Building. Attendees for the Senate focus group were recruited through an e-mail announcement to individuals in the Hart building.
All Brentwood participants were paid $50 for participation, and either breakfast or dinner was provided. Senate ethics rules preclude Senate staff from accepting cash payments; lunch was provided. All study methods were reviewed and approved by the RAND Human Subjects Protection Committee.
Focus groups were conducted by 2 moderators (J. B., Y. H.). Two specially trained interpreters attended the focus group for the hearing-impaired. Participants were assured anonymity and confidentiality of responses. Sessions were taped for later transcription.
We asked open-ended questions designed to assess a number of key issues relating to communication and trust surrounding the public health response to the anthrax exposures. Recordings were transcribed and coded using ATLAS.ti version 4.2 software (Scientific Software Development, Berlin, Germany). Major domains and subdomains were identified by 2 of the authors (N. L., J. B.) on initial review of the transcripts. Statements were then coded independently by 2 authors (J. B., Y. H.), and differences in coding were settled by consensus agreement. An individual statement was defined as a contiguous discussion around a subdomain by an individual speaker. Some statements had overlapping themes and thus could be assigned more than 1 code.
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RESULTS |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONReferences |
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Thirty-six Brentwood postal workers participated in 4 focus groups; 7 of the participants (19%) were hearing-impaired and 35 (97%) were African American, with equal proportions of men and women. Seven persons participated in 1 Senate focus group; 5 individuals (71%) were White, 2 were African American, and 6 were female.
A total of 716 statements were identified and coded into individual subject domains/subdomains—573 from Brentwood and 143 from the Senate (Table 2). The distribution of issues was similar in all 4 Brentwood focus groups, although the predominately hearing-impaired group provided additional information specific to this impairment.
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The domains identified were source of information (the origin of basic information, such as the media or Centers for Disease Control and Prevention [CDC], regardless of the perceived quality of this information), attitudes or problems with the information itself (whether participants felt information was available for both hearing and hearing-impaired groups, was delayed, was clear, or was of good quality), attitudes toward the source of information (participants’ opinions about agencies/groups who were responsible for delivering information or interacting with relevant groups), attitudes toward treatment options, including antibiotics and vaccines, and recommendations for future improvement. Findings for each domain are described below.
Source of Information
For the Brentwood participants, the most commonly cited source of information was the media (Table 3). Thirty-three statements cited the media as the initial source of information that anthrax had been identified at the participants’ workplace. Participants also cited US Postal Service (USPS) management as a source of information disseminated through organized meetings. Senate workers also cited the media, but they more frequently cited internal channels of communication, such as the Capitol Physician’s Office and a Navy physician who worked closely with the physician’s office, and coworkers and friends. Other sources identified included the Internet, the CDC, and the District of Columbia Department of Health. One Brentwood employee stated, "I read the description and saw the pictures in the newspaper of what the anthrax virus looks like, and I thought, I could be exposed to this?"
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Attitudes Toward the Information
Over half of the statements in this domain by both Brentwood and Senate groups expressed frustration with the lack of information about anthrax (Table 3
). Participants at both sites felt that the information they did receive was unclear, inconsistent, and in many cases, inaccurate. Many of the Brentwood workers felt that the information they received was not timely, and they expressed concern about the fact that they were never told the results of their nasal swab testing. Nine of the Brentwood statements specifically address problems related to those with hearing impairments. Comments addressed the lack of qualified interpreters able to communicate about issues related to the anthrax emergency, including evacuation of the Brentwood facility and recommendations about antibiotic prophylaxis. One hearing-impaired Brentwood employee (hereafter, speakers of the quoted material are identified only by focus group location and as "hearing impaired" if applicable) said, "I know the hearing people got more information than me. . . . I know they could at least talk with the people sitting behind the desk, whereas I couldn’t."
Attitudes Toward Sources of Information
Two hundred forty-eight of the 573 statements from the Brentwood groups and 43 of the 143 statements from the Senate group addressed attitudes toward the agencies responsible for providing information (Table 3). Both groups made statements noting that the CDC and the District of Columbia health department provided very little useful information. In addition, Brentwood workers stated that information provided by the USPS, mainly through management, was incomplete or inadequate.
Both groups expressed negative opinions, and particularly mistrust, of many of the sources of information, such as from the USPS and the CDC, although the underlying reasons for mistrust differed by location. Among the Brentwood participants, mistrust was linked to the delay in evacuating the facility and initiating nasal swab testing and treatment and to feelings that they had been treated differently because of their social class and race/ethnicity. In contrast, the mistrust and negative opinions expressed by the Senate group were linked to inconsistency of information and poor organization of the public health representatives responsible for communication. Although these concerns were mentioned in the Brentwood group, they were secondary to the recurrent themes of mistreatment and disrespect. At both sites, participants stated that before the anthrax emergency, their opinions of the CDC and the local health department had been either neutral or favorable, but the views expressed in the focus groups reflected that their opinions of these organizations changed during the crisis:
I thought the CDC was something regarding the concern for public health. . . . I had a most high respect, but right now they’re just a part of the government to deceive (Brentwood).I never had an opinion about the CDC before. And now [it’s negative]. I assumed CDC was the expert. . . . And they had done all the testing. They knew it all. There was definitely an assumption that the federally funded Centers for Disease Control knows all about diseases. (Senate).
The Brentwood groups reported predominately favorable impressions of their primary information source—the media—and expressed the opinion that the media in general were a better source of information than either USPS management or public health agencies. In contrast, some participants in the Senate group felt that the media did not report information accurately. They commented favorably on the Capitol Physician’s Office, which, they felt, served as a major source of consistent and familiar information, as well as on a Navy physician who worked closely with the Capitol physician. Office managers at the Capitol often took responsibility for information dissemination among their staff:
You’re talking to one person from CDC and the next day you walk in the room and you get this new person. . . . And it was a different story [and] different person every day. Whereas, with the Navy, it was one person and he was consistent. If he’d been wrong on something, he would [update us]—you never heard conflicting reports from him with no explanation, which happened with all the other sources of information (Senate).My impression throughout this was that the Capitol [Physician’s Office] . . . was truly concerned about us versus the CDC or other people who were just like, ‘Isn’t this a fascinating laboratory test’ (Senate).
Although some participants did seek information from their personal doctor or from local hospitals, participants in both locations felt that these sources were limited in their ability to provide information because of a poor understanding of the natural history of anthrax infection. Furthermore, they believed that anthrax-related knowledge was not effectively communicated to community physicians and hospitals by the CDC or the District of Columbia Department of Health. Eight statements by the Brentwood participants indicated an impression that physicians and local hospitals were essentially "gagged" by the CDC and instructed not to provide care to Brentwood employees.
Seventy-nine of the statements from the Brentwood focus group referred to a perception that they were not treated with respect and that they were often treated differently from other groups (mainly those at the Senate) because of race and other socioeconomic reasons:
We’re just common black workers. We’re poor black workers. . . . They’re special. They work for the Senate, they work for the government. We’re just poor, stupid people that don’t get anything (Brentwood, hearing impaired).They tested the Capitol Hill police dogs before they tested the postal workers (Brentwood).
Thirty comments in the Brentwood focus groups referred to experimentation. The Tuskegee syphilis experiment was cited in discussing the anthrax events—a theme that permeated all 4 Brentwood focus groups. Some felt that the anthrax exposure itself was an experiment, and others remarked that once the exposure had occurred, the government and the CDC took advantage of the situation to observe its effects on them rather than to provide immediate treatment:
I made it plain that I thought that it was a cover-up. . . . Because the government’s done it before. They did it with syphilis (Brentwood).
Although the majority of opinions expressed an overall discontent with the quality and timeliness of information, some participants recognized that public health agency efforts were hampered by lack of available information about anthrax. They felt the major problem was not the lack of knowledge but how this deficiency was communicated to the public:
They’ve had anthrax in mail before but it was never exposed to a group of people. . . . I can understand them not having the data (Brentwood).
Attitudes Toward Medications and Vaccines
Although many persons at both locations took most of their prophylactic antibiotics, some did not complete the entire course. Reasons included side effects and the recommendations of their personal physicians. Workers at both locations noted that lack of information about the medications, such as side effects and drug interactions, was a major problem (Table 3).
Two participants out of 36 in the Brentwood group elected to be vaccinated for anthrax. One stated that a family member had been vaccinated with no problems, and another cited previous experience with the military. Those who chose not to be vaccinated cited the facts that the vaccine was billed as experimental and that those who administered it did not appear want to take responsibility for any side effects. Three of the 7 Senate group participants chose to be vaccinated; however, others stated that they were not offered the vaccine because they were not at the highest risk of exposure. Those who did take the vaccine said information from a Navy physician as well as personal discussions with peers influenced their decision. These decisions were largely influenced by the level of trust in the recommending public health authority (Table 3).
Suggestions for Future Improvement
At the end of each focus group, participants were asked what they would have done differently had they been in charge of handling the response to the anthrax exposures. Most of the quotations (55 out of 105) involved improving communication, setting up identifiable contact persons who could serve as advocates, and making efforts to eliminate disparities in treatment between those affected. Representative suggestions are presented in Table 4.
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DISCUSSION |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONReferences |
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Focus group results indicate the prevalence of issues associated with lack of communication and trust, disrespect, and disparities in treatment on the basis of race or social class. The focus groups also reveal the importance of a consistent, trusted advocate. When in doubt, many participants turned to their local hospitals and physicians, who unfortunately were often unable to provide informed advice. Many respondents felt that their own physicians had been "gagged."
Many of the concerns expressed in the focus groups may have been simply a result of miscommunication. Because of the lack of significant prior experience with anthrax, recommendations changed as new information became available. Public health messages may have been interpreted as being inconsistent or unreliable if the rationale for such changes was not made clear.
The references to mistrust and the parallels with the Tuskegee experiment expressed by the Brentwood postal workers raise serious concerns. In the Tuskegee experiment, over 128 deaths from syphilis or related complications occurred when 399 men remained untreated for the disease after enrollment in a study conducted by the United States Public Health Service.16 Our findings are consistent with prior research that has documented minority group mistrust of the medical community.17,18 In our sample, many reported an initial favorable or neutral opinion of public health agencies, indicating that during the emergency, trust eroded. This problem could potentially have been avoided with more effective communication from the start.
The identification of an advocate (the Capitol Physician’s Office), as well as networking with individuals who took responsibility for informing others, seemed to help Senate workers cope with events. Neither the advocacy nor the networking appeared to be immediately available to Brentwood staff. Instead, many had to rely on the media and the rapidly changing information given to them by various groups, including the USPS, the CDC, and the District of Columbia Department of Health.
The focus groups suggested a set of recommendations. Many involved improving training and coordination in the medical and public health community. Others, summarized below, suggest ways to improve communication effectiveness.
- Consistency of messages across all groups affected is paramount to encouraging trust. Responsible parties should present an organized front and establish clear lines of communication to address unanswered questions.8 In the event of uncertainty, it is important to be honest while at the same time providing reliable updates on changing developments.
- Communication efforts should closely involve people within the community of exposed individuals, preferably someone who is widely recognized and trusted and who can provide input as well serve as a spokesperson. Bioterrorism preparedness efforts in the workplace should involve identification and training of such potential leaders.
- The community of exposed individuals should be involved in helping to devise plans for intervention, treatment, and communication. Many nonacute public health interventions, such as immunizations and cancer screenings, have increasingly adopted such community-based involvement as effective models of care.19–21
- Future communication efforts must also consider the diversity of individuals who might be affected. Consideration should be given to an array of relationships to include not only persons of differing racial and socioeconomic backgrounds but also those with physical limitations that could hinder communication, such as those with hearing impairments.22 For these populations, effective interventions require not only interpreters but interpreters specifically trained in health care communication who can be readily available at community meetings and support groups.23,24
In an emergency situation, such as a crisis requiring mass vaccination or prophylaxis, it will be important for everyone to participate. Groups with a historical legacy of mistrust in government, and those who have difficulty communicating (resulting, for instance, from poor English skills or a hearing impairment) may not participate in such efforts, either by choice or because they do not understand the emergency. As a result, an emerging infection, whether caused by bioterrorism or a naturally occurring event, could spread widely before being contained.
Public health officials and others should begin now to develop the kinds of relationships necessary to communicate with a range of diverse groups. These relationships need to be nurtured and will take time to mature to a level of reliability that can be called on in times of crisis. Although we focused on African Americans and the hearing impaired in our sample, lessons learned from these groups can apply to other vulnerable populations as well.
Limitations
There are several limitations to our study. First, the focus groups were conducted 14–16 months after the initial exposures, and therefore many perceptions may have been distorted by the passage of time and by other public events that have occurred in the interim. Second, focus group participants were not selected at random, so persons more likely to have strong opinions about the events may have been more likely to participate. Finally, we were limited in the number of focus groups we could conduct.
Conclulsions
Effective public health emergency communication must recognize and respond to diversity. Trust requires a consistent message and open acknowledgment of limitations. Although approaches to different populations may vary, key messages must be the same. All parties should feel that they are treated fairly and without bias. In the words of a Brentwood employee, "Three words: honesty, diligence, and respect. We never got any of those three. If you treat, I don’t care what color you are, a human being, like you care about that human being’s well-being . . . that person will give everything up but their soul to say, ‘Okay, that person cares about me. I’m going to listen. I’m going to work with you.’"
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Acknowledgments |
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This study was supported by the Robert Wood Johnson Foundation (grant 046108).
Human Participant Protection
All study methods were reviewed and approved by the RAND human subjects protection committee.
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Footnotes |
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Peer Reviewed
Contributors
J. Blanchard supervised all aspects of the study, ran the focus groups, and completed the analysis. Y. Haywood ran the focus groups and completed the analysis. B. Stein, T. Tanielian, and M. Stoto contributed to writing. N. Lurie supervised the study and completed the analysis. All authors helped to conceptualize ideas, interpret findings, and review drafts of the article.
Accepted for publication February 22, 2004.
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References |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONReferences |
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