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Evaluation of Stigmatizing Language and Medical Errors in Neurology Coverage by US Newspapers
ORIGINAL ARTICLE STIGMATIZING LANGUAGE IN NEUROLOGY COVERAGE IN US NEWSPAPERS
Evaluation of Stigmatizing Language and Medical Errors in Neurology Coverage by US Newspapers JOSEPH J. CASPERMEYER, MS; EDWARD J. SYLVESTER, MA; JOSEPH F. DRAZKOWSKI, MD; GEORGE L. WATSON, PHD; AND JOSEPH I. SIRVEN, MD OBJECTIVES: To analyze US newspaper coverage of neurologic diseases to determine whether stigmatizing language is used in describing patients and examine its sources where found and to examine stories for medical errors. METHODS: A content analysis of newspaper articles was performed for 2003 using the Lexis-Nexis database. Keyword searches for 11 common neurologic conditions were performed for The New York Times and 8 regional newspapers with circulation greater than 200,000. RESULTS: A total of 1203 stories focusing on 11 neurologic conditions were recovered. Newspaper coverage did not reflect disease prevalence (rank correlation, ρ=–0.009; P=.98). The topics most covered were Alzheimer disease and other dementias (400 stories, 33% of total), which were eventually combined into 1 category for purposes of data analysis. Conditions with the highest prevalence were among the least covered topics, including migraine (34 stories, 3% of total) and head trauma (19 stories, 2% of total). Stigmatizing language was found in 15% of all stories. Excluding wire stories, the average among locally produced newspaper stories was higher (21%). Stories on epilepsy (30%) and migraine (29%) contained the highest frequency of stigmatizing language. Sources of stigma within a story included reporters (55%), patients (26%), family (17%), and physicians (16%). In an accuracy analysis, 20% of sampled stories contained medical errors or exaggerations, with half of these concerning neurodegenerative conditions. CONCLUSION: A total of 21% of all stories (excluding wire stories) contained language judged stigmatizing, with reporters as the most common source of the stigmatizing language. A total of 20% of analyzed stories had medical errors or exaggerations, the latter most often overstating treatment effectiveness.
used as the theoretical framework for our analysis of stigma. Goffman defined stigma as “the situation of the individual who is disqualified from full social acceptance.” Stigma commonly results from a transformation of the body, blemish of individual character, or membership in a despised or otherwise marginalized group. An inquiry into news media portrayals of individuals with neurologic conditions is relevant to understanding this burden. In particular, the print news media are the second most important For editorial source of medical information for the comment, see public after physicians and clinics.2 page 291 Thus, they have the potential to promote misconceptions about neurologic issues and particular brain disorders. Additionally, in previous print media studies, including those of the acquired immunodeficiency syndrome epidemic, mental health coverage, and epilepsy, stigmatizing portrayals of affected individuals have been numerous.3-6 In this study, we analyzed US newspaper coverage of neurologic diseases to determine whether stigmatizing language is used in describing patients and examine its sources where found. Our research additionally attempted to provide an overview of medical errors introduced into newspaper reports.
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METHODS
N
ormal brain function is strongly linked to the modern view of personal health and identity. Physicians consider the inalterable absence of such function, or brain death, sufficient to connote death. Conversely, in addition to the intrinsic biological burdens of disease, neurologists observe that some neurologic conditions present a further burden of morbidity by stigmatizing patients. Sociologist Erving Goffman1 provided a seminal discussion of stigmatization as “spoiled identity,” which will be From the Walter Cronkite School of Journalism and Mass Communication, Arizona State University, Tempe (J.J.C., E.J.S., G.L.W.); and Department of Neurology, Mayo Clinic College of Medicine, Scottsdale, Ariz (J.F.D., J.I.S.). Individual reprints of this article are not available. Address correspondence to Joseph I. Sirven, MD, Department of Neurology, Mayo Clinic Hospital 5W, 5777 E Mayo Blvd, Phoenix, AZ 85054 (e-mail: [email protected]). © 2006 Mayo Foundation for Medical Education and Research
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A content analysis for the prevalence of stigmatizing language and medical errors in neurology coverage was performed using the Lexis-Nexis database for newspaper articles in the calendar year 2003. Keyword searches in the top 11 categories of common neurologic conditions7 were performed for 1 major newspaper, The New York Times, and 8 regional newspapers that represented distinct ownership and geographic areas, each with a circulation greater than 200,000 (Table 1).8 One exception to exclusion of newspapers owned by the same media group is The Boston Globe, which is owned by Times Group Inc. This newspaper was included because of its regional importance for medical coverage. The potential readership of all combined newspapers exceeds 6 million. The most commonly accepted medical terms were used in the keyword search. Obituaries and stories that were business oriented or dupli-
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STIGMATIZING LANGUAGE IN NEUROLOGY COVERAGE IN US NEWSPAPERS
TABLE 1. Newspapers Selected for Study Newspaper
Circulation
The Arizona Republic The Atlanta Journal-Constitution The Boston Globe Chicago Sun Times Houston Chronicle The New York Times The San Diego Union-Tribune The Seattle Times The Virginia Pilot
Ownership group
448,782 (Monday-Saturday) 554,059 (Sunday) 460,672 (Monday-Saturday) 620,782 (Sunday) 448,044 (Monday-Saturday) 705,727 (Sunday) 313,692 (Monday-Saturday) 371,257 (Sunday) 552,052 (Monday-Saturday) 744,935 (Sunday) 1,055,512 (Monday-Saturday) 1,671,865 (Sunday) 373,344 (Monday-Saturday) 438,848 (Sunday) 215, 111 (Monday-Saturday) 473,010 (Sunday) 219,971 (Monday-Saturday) 233,993 (Sunday)
Gannett Co Inc Cox Newspapers Inc New York Times Co Hollinger International Inc Hearst Newspapers New York Times Co The Copley Press Inc Seattle Times Co Landmark Communications Inc
Data are from Editor and Publisher International Year Book: The Encyclopedia of the Newspaper Industry.8
cated by wire services were excluded from the data set. The stories recovered were then sorted for the 11 neurologic conditions. Because Alzheimer disease and general dementia almost always appeared together in stories, these 2 categories were conflated, and the final analysis was performed for 10 neurologic disease categories. The news articles were stratified according to the neurologic disease category and computer randomized within categories, and a disproportionate stratified sampling of the first 10 stories for each category was subjected to analysis for medical errors. Two neurologists (J.I.S. and J.F.D.) independently reviewed each of the stories and coded for accuracy. After independent review, they conferred to validate their accuracy. For the stigma analysis, a complete analysis of all stories was performed by one coder (J.J.C.), with another coder (E.J.S.) validating the selections. The 2 coders conferred to resolve discrepancies. Thus, findings for stigmatizing language reflect analysis of the full data set, whereas findings for medical errors represent the random sample stratified for each disease. STIGMA CODING Stigmatizing language was defined as wording that portrays the patient with the neurologic condition as socially undesirable, less desirable, or reduced in personal worth, following Goffman’s criteria. The researchers did not code for or judge in any way the accuracy of stigmatizing language. Using Goffman’s definition, accurate portrayals still may confer stigma on an individual or group. The stigmatizing source could be a physician, family member, patient, or reporter independently summarizing or making observations in the story. Mayo Clin Proc.
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ACCURACY CODING Coding for accuracy was based on disease risk, description of disease symptoms, and treatment. Exaggerating disease risk is when the risk of dying of the illness is overestimated. Underestimating disease risk is when the risk of dying of the illness is underestimated. Exaggerating disease was defined as presenting symptoms as more severe or not representative of most patients with the condition. Underestimating disease occurs when presenting symptoms are less severe or not representative of most patients with the condition. Treatment exaggerations are claims that a therapy was curative when less than a majority of the patients were able to control their illness or inaccurate claims that there were no adverse effects to a therapy. Finally, omission of key data is the announcement of a new treatment or scientific breakthrough with no further identification or explanation. KEY RESEARCH QUESTIONS OF THE STUDY The following research questions were addressed: Does the number of articles covered in each newspaper correspond to the overall prevalence or frequency of the disease? Do the stories published in each newspaper portray persons with neurologic diseases in such a way as to stigmatize them? Do the stories report accurately on medical issues, such as research and treatment advances, severity of disease burden, and morbidity and mortality? RESULTS Excluding business stories, obituaries, and editorials, 1203 stories pertaining to the top 11 major neurologic conditions were recovered for 2003, with Alzheimer disease and dementia then combined into 1 category, for a final total of 10
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TABLE 2. Correlation Between Prevalence of Disease in Population and Amount of Newspaper Coverage* Condition/prevalence per 100,000 population†
Percentage of total news stories (rank)
No. of news stories in 2003 (N=1203)
5-Year survival (%)
Migraine/2000 Epilepsy/650 Stroke/625 TBI (mild, moderate, severe)/600 Dementia/Alzheimer disease/250 Parkinson disease/200 Brain tumors/60 Multiple sclerosis/60 ALS/6 Creutzfeldt-Jakob disease/<1
2.8 (9) 9.8 (6) 13.2 (4) 1.6 (11) 14.1 (3)/19.2 (1) 14.4 (2) 5.4 (8) 10.3 (5) 2.4 (10) 6.6 (7)
34 114 158 19 171/229 177 65 128 29 79
99 95 60 60 5 95 20-60 76 0 0
*ALS = amyotrophic lateral sclerosis; TBI = traumatic brain injury. †Data are from Wallin and Kurtzke.7
conditions. Virtually no correlation (Spearman rank order coefficient, ρ=–0.009; P=.98) occurred between the frequency of story coverage and the prevalence of disease (Table 2). The most covered neurologic conditions were Alzheimer disease and other dementias (400 stories), accounting for 33% of all stories. Parkinson disease (177, 15%), cerebrovascular disease (158, 13%), and multiple sclerosis (128, 11%) rounded out the top 5 conditions and accounted for 72% of news coverage. Conditions with the highest prevalence, such as migraine headaches (34, 3%) and head trauma (19, 2%), were among the least covered conditions. Of neurologic conditions with a high mortality rate, Creutzfeldt-Jakob disease (79, 7%) had a higher number of stories than amytrophic lateral sclerosis, (29, 2%), which had the fewest stories. Although most articles contained no stigmatizing language, such language was found in 15% of the stories, and of these, there was an average of 2.0 stigmatizing phrases per story (Tables 3 and 4). Excluding wire stories from the story pool, the average among locally produced newspaper stories was higher (21%) (Tables 3 and 4). Descriptions of epilepsy (30%) and migraine (29%) contained the most frequent prevalence of stigmatizing language, followed by multiple sclerosis (19%), dementia (16%), amytrophic lateral sclerosis (14%), and traumatic brain injury (6%) (Table 3). Most of these phrases (64%) were found in stories with a patient-focused, narrative drive. Among the sources of the stigmatizing language, the most prevalent per article was descriptive language used by reporters (55%), followed by patients (26%) and family (17%). Such language was attributed to physicians in 16% of stories (Figure 1). Other sources combined for a total of 35%. Celebrities afflicted with a neurologic condition were featured in 12% of all stories, with coverage dominated by Pope John Paul II’s struggle with Parkinson disease (66%). 302
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In a stratified random sample of medical errors, representing approximately 10% of the stories in the population, 20% of stories analyzed had clear inaccuracies or exaggerations. This sample size obtains a 90% confidence interval and probability of rarest relevant instances of the occurrence of stigma and medical errors of 0.2 in the population of stories. Neurodegenerative diseases (Alzheimer disease or dementia and Parkinson disease) accounted for most errors. Most errors were exaggerations of parkinsonian symptoms or overstatements of the treatment effects of new therapies that had been tried only in animal models. DISCUSSION The research presented in this study addresses issues of newspaper coverage, use of stigmatizing language, and medical errors found in articles focused on prevalent neurologic conditions. The results indicate the inherent conflicts that result in the societal collision of news values and news judgment of reporters, health information dependency of the general public, portrayal of individuals with neurologic conditions, and the critical impact of language accuracy for physicians who treat those with such conditions. According to the Gallup Organization, television is Americans’ most frequent source of health and medical news.2 Yet, television was at the bottom of the “trusted” list. Gallup reported that the public has high exposure to television health and medical news but discounts its credibility. The Internet rated little better and was also near the bottom, even among 18- to 49-year-olds. Physicians are the most respected information sources, followed by books and magazines and newspapers; that is, newspapers are among the more trusted sources. Thus, issues of the number of newspaper articles focusing on a particular neurologic condition, accuracy of information reported, and prevalence of stigmatizing language found in newspaper stories may
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STIGMATIZING LANGUAGE IN NEUROLOGY COVERAGE IN US NEWSPAPERS
TABLE 3. Disease Comparison Summary for Stigmatizing Language*
Disease ALS
No. of stories with Total No. stigmatizing of stories references
No. of stigmatizing references
29
4
5
229
29
55
Brain tumors
65
7
14
Creutzfeldt-Jakob disease
79
4
18
Dementia
171
21
48
Epilepsy
114
19
33
Migraine
34
8
19
Multiple sclerosis
128
14
20
Parkinson disease
177
10
13
Stroke
158
9
12
19
1
3
1203
126
Alzheimer disease
TBI
Totals
240 (2.0 per story)
Stigmatizing sources (%) Patient (1); reporter (4); family (0); other physician (0); neurologist (0); other (0) Patient (12); reporter (26); family (7); other physician (3); neurologist (0); other (7) Patient (5); reporter (3); family (4); other physician (0); neurologist (1); other (1) Patient (6); reporter (5); family (0); other physician (2); neurologist (0); other (4) Patient (5); reporter (20); family (10); other physician (2); neurologist (1); other (10) Patient (15); reporter (4); family (3); other physician (0); neurologist (1); other (10) Patient (18); reporter (0); family (0); other physician (1); neurologist (0); other (0) Patient (7); reporter (1); family (2); other physician (3); neurologist (0); other (7) Patient (1); reporter (6); family (0); other physician (0); neurologist (0); other (6) Patient (3); reporter (4); family (0); other physician (1); neurologist (0); other (4) Patient (0); reporter (1); family (1); other physician (1); neurologist (0); other (0) Patient (32); reporter (32); family (12); other physician (6); neurologist (1); other (21)
Type of stigmatizing story (No. of stories)
Total No. of stories in which disease is not focus
Total % of stigmatizing stories†
News (0) Feature (4)
1
14
News (18) Feature (11)
50
16
News (1) Feature (6)
7
12
News (2) Feature (6)
2
5
News (10) Feature (11)
42
16
News (9) Feature (10)
50
30
News (0) Feature (8)
6
29
News (2) Feature (12)
53
19
News (7) Feature (3)
57
8
News (0) Feature (9)
65
10
Feature (1)
3
6
336
15
News (45) Feature (81)
*ALS = amyotrophic lateral sclerosis; TBI = traumatic brain injury. †Number of stories with stigmatizing references divided by the total number of stories minus the total number of stories in which the disease is not the focus.
have a disproportionate influence to that exchanged privately or used in less trusted media. Because readers trust newspapers to reflect accurate views about neurologic conditions, stories also may promulgate misconceptions about neurologic disorders. The lack of correlation found between disease prevalence and news coverage offers a particularly interesting avenue for further study because such discrepancies can mislead the Mayo Clin Proc.
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public about relative risks of particular activities or illnesses or where medical resources are most needed or directed. However, this discrepancy between coverage and prevalence fits a primary news value axiom—what makes news is most often the unusual. Also high on such news value lists for the reporter are conflict or controversy, impact (on a population or individual), human interest, and prominence of the story sub-
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TABLE 4. Newspaper Comparison Summary for Stigmatizing Language
Newspaper stories (excluding wire) The Arizona Republic The Atlanta Journal-Constitution The Boston Globe Chicago Sun Times Houston Chronicle The New York Times The San Diego Union-Tribune The Seattle Times The Virginia Pilot Total Wire stories Total stories
No. of stories
No. of stories with stigmatizing references
No. of stigmatizing references
Stories in which disease is not focus
Total % of stigmatizing stories
53 72 133 39 59 222 100 58 38 774 429 1203
9 9 16 7 9 20 14 10 6 100 26 126
16 13 33 12 13 30 25 17 15 174 66 240
16 25 41 18 14 75 49 21 7 266 70 336
24 19 17 33 20 14 27 27 19 21 7 15
ject.9 Thus, illnesses that heavily affect the lives of patients and their families and in which there are conflicts of treatment options are judged as having high news value, independent of the medical or scientific value physicians might assign the information. Add a prominent person to the mix or a subject engendering great fear but little actual risk, such as bovine spongiform encephalopathy (mad cow disease), and the explosion of stories on a subject that physicians might deem of little public value is predictable.5 Nevertheless, these stories may be all the more valuable to study for prevalence of errors and frequency of stigmatizing language. The stories themselves have presumptive impact, which makes them both artifacts and potential shapers of popular attitudes. The language used by reporters is that of everyday speech, the familiar, because they seek in large measure to reflect the views of the public to the public, perhaps especially important for physicians who wish to influence these views.9 Neurologic illnesses can enormously affect an individual’s overall health and societal well-being; thus, a substantial aspect of morbidity may be the stigma associated with neurologic disease. In certain instances, those with certain conditions may be seen primarily through the lens of the illness, or the ill person may be seen as diminished in personality or mind or pitiable.10-12 The disease has a “spoiling” effect on other aspects of a person’s identity, whereby the disease status becomes the person’s “master status”; that is, the disease becomes the “master lens” through which the individual is seen. The individual is perceived as unable to fulfill prior role requirements in relating to “normal” people and is “reduced in our minds from a whole and usual person to a tainted, discounted one.”1 Of 760 Gallup respondents questioned on the effects of various types of health stories, most said articles that included personal stories were more relevant to them.2 Per304
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sonal stories also enhanced respondents’ understanding of the topic covered. Most of the stories that contained stigmatizing language analyzed in our study involved material that included such personal accounts; thus, errors or stigmatizing language in these stories may be assumed to have effects intensified by high readership and reader involvement. Continued study of these issues may lead to improved public understanding of the nature and gravity of neurologic conditions in several ways. When medical professionals communicate among themselves about diseases, clinical words must retain their specific, precise meanings. However, when they communicate with patients and families, language must become less precise but more easily understood. The ways in which such ordinary language is used by journalists and the conferring of stigma noted in some stories can offer opportunities for physicians to improve their own communications—directly with patients and indirectly with the journalists who provide backup and reinforcement. Furthermore, identifying medical errors in newspaper stories can help journalists do their jobs better. The fact that patients were the second most frequent source of stigmatiz-
Neurologist
(2%)
Other physician
(14%) (26%)
Patient
(55%)
Reporter Family
(17%) (35%)
Other 0
10
20
30
40
50
60
Stories (%)
FIGURE 1. Sources of stigmatizing language in newspaper stories.
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STIGMATIZING LANGUAGE IN NEUROLOGY COVERAGE IN US NEWSPAPERS
TABLE 5. Fifteen Examples of Stigmatizing Language Found in Newspapers* Disease Amyotrophic lateral sclerosis Alzheimer disease or dementia Alzheimer disease or dementia Brain tumor
Brain tumor Epilepsy
Epilepsy
Migraine
Multiple sclerosis
Parkinson disease
Parkinson disease
Parkinson disease Stroke
Stroke Traumatic brain injury
Speaker or source
Statement(s) His speech is difficult to hear, as if coated with molasses, a symptom of a disease that has ravaged his motor skills and crippled his being. So far, both sisters have been good about covering their lapses.... Lxxx avoids conversations that she knows she can’t keep up with. The sisters admit they have thought of suicide. “I wanted him restored to himself. I wanted my father back. This old geezer made me mad.”
Reporter
Now 12, Axxxx is a good student with an outgoing personality. His parents have tried to teach their only child to cope with his disability, but sometimes it’s hard.... “There’s not a lot of things a blind kid can do that other kids want to do,” said Rxxx Pxxxx. “No one would take a meeting with me or anything. I was damaged goods, babe. That’s what was in the back of my mind, damaged goods. Can’t fit the American-male leading hero. A hero does not have a brain tumor.” For more than a century, the Jukes clan has been presented as America’s most despised family. Social science researchers long believed they were a case study of dysfunction, a bunch of genetically linked paupers, criminals, harlots, epileptics and mental defectives, whose care had placed a huge financial burden on taxpayers. “A lot of epileptics are not going to tell you they have it because they’re embarrassed or because the incidence of discrimination is huge.”... She says Rxxxx has told her that students have been seen in the back of a classroom, imitating the dramatic motions her body made when she had the seizure 18 months ago. Even as a young woman, she let her friends think she was an alcoholic rather than tell the truth. A woman with migraines was considered too uptight, too pushy, too assertive, back then, and Dxxx was a nice girl from the Midwest. “An attending surgeon said that I had no right to be going into medicine, because I couldn’t be accessible around the clock. You know, when an attending surgeon says that in front of the other residents, the residents just don’t treat you well.” (When Pope John Paul II’s Parkinson disease was disclosed) It was the first time a top Vatican official had publicly acknowledged the pontiff suffers from Parkinson’s.... The Vatican has never officially attributed the source of the pope’s trembling hands and slurred speech, typical symptoms of Parkinson’s. Twenty-eight years after he was told he had Parkinson’s disease, Mr. Ballard, creator of the country’s only graduate program in puppetry, no longer has control of his legs. But he can still drag himself from room to room, “if someone gets me going,” he said.... He had become, for a moment, a puppet. “The first year was so depressing. I cried every time I turned around,” she admits. “You see so many people with Parkinson’s, like Muhammad Ali, and you don’t want to end up like him.” (From a TV ad prepared by the Advertising Council, with voiceover by actress Sharon Stone) Stone says, “There’s something you should know about me. I’m cold. I’m calculating. I get what I want. If you get in my way, I’ll wreak havoc upon you. I can leave you weak. Limp. Twisted. Confused. If you want to live to see tomorrow, you answer to me, and you answer quickly.” The victims of strokes can be terrible puzzles, a torture to families, and sometimes an ordeal for the courts. It is here that Fxxx sets aside his grief and the comments from doctors who said his stepson would amount to no more than a vegetable. Most people might write Bxxxx off as hopeless when they see his fragile frame in a wheelchair. For many doctors and hospitals, patients with severe brain and spinal injuries are rejects....
Family
Patient Family
Patient Reporter
Family, other Patient
Patient, other physician Other
Reporter
Patient Other
Reporter Family, reporter
*Although all names appeared in the news stories cited, identifiers were removed from the table unless the individual had celebrity status. Statements in quotation marks are direct quotes used by a reporter. Statements not in quotation marks are either indirect quotes or the written copy of the reporter.
ing language offers an educational opportunity for physicians and support groups for each disease, particularly among the more highly stigmatizing diseases of epilepsy, migraine, multiple sclerosis, and dementia. Alerting journalists to the discrepancies between disease prevalence and disease coverage can offer them ideas for stories on the real impact of little-covered neurologic diseases on large numbers of readers’ lives. Finally, providing realistic portrayals of disability should aid in the construction of a healthy selfimage for patients and in shaping an informed image of them for those who have no personal contact with them. Of note, we made no effort to assign gradations across a broad spectrum of stigmatizing language (Table 5). For example, if a physician tells a patient that research indiMayo Clin Proc.
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cates that patients with this form of brain tumor have a median survival of 6 months, we would code that as an example of stigmatizing language. Such an individual might be refused employment for which he or she was otherwise well qualified, be pitied or shunned by friends, and be depressed and anxious about his or her prospects; in other words, he or she would be stigmatized by Goffman’s definition. However, one cannot argue that the physician should alter the diagnosis or that the reporter should omit it; one might say that the stigma inheres in the gravity of the illness and is conveyed through accurate diagnosis and reporting. Nevertheless, consider the same diagnosis reported differently as the reporter writes, “The physician said the patient has only 6 months to live.” This is inaccu-
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rate; whatever stigma burden may have been added to the disease by the diagnosis has been augmented by incorrect reporting. Such an error in medical fact with stigmatizing consequences would lie at the opposite end of such a spectrum from the first example. A middle category might be the most interesting area for further study: stories that contain no errors or exaggerations in which trained coders drawn from the public disagree about whether language is stigmatizing or not. Such a study would have to be much larger in scope; however, this middle group might offer the richest opportunity for discussion because public perceptions and attitudes are the foundation of the stigmatizing process. CONCLUSION This study was the first attempt to examine newspaper coverage of stigma regarding the most common neurologic conditions and to examine reporting accuracy. Neurologic health information provided to the public by newspapers continues to be compromised by issues of reporting accuracy (20% of all stories had medical errors or exaggerations). The common consequences for victims of stigmatization are real: social exclusion, financial hardship, and many forms of discrimination. Such attitudes may prevent individuals from seeking diagnosis and impair their willingness to access health care, thus contributing to the morbidity and mortality of disease. The social inequality of stigma was both reflected by and upheld by neurology coverage
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(21% of all stories). Stigmatizing biases toward persons with neurologic diseases persist, and all aspects of society (health care professionals, family, reporters) were among the sources of errors in neurology reporting. This examination of stigma and inaccuracy in reporting may serve to help identify factors that could improve physician-patient communication, patient attitudes toward various conditions, and reporter coverage of neurologic illnesses and general health care coverage. REFERENCES 1. Goffman E. Stigma: Notes on the Management of Spoiled Identity. New York, NY: Simon & Schuster Inc; 1963. 2. Lantz JC, Lanier WL. Observations from the Mayo Clinic National Conference on Medicine and the Media. Mayo Clin Proc. 2002;77:1306-1311. 3. Fuller LK. Media-mediated AIDS. Cresskill, NJ: Hampton Press; 2003: 43-62. 4. Karpf A. Doctoring the Media: the Reporting of Health and Medicine. New York, NY: Routledge; 1988:135-148. 5. Seale C. Media and Health. Thousand Oaks, Calif: SAGE; 2002:93-119. 6. Krauss GL, Gondek S, Krumholz A, Paul S, Shen F. “The scarlet E”: the presentation of epilepsy in the English language print media. Neurology. 2000;54:1894-1898. 7. Wallin MT, Kurtzke JF. Neuroepidemiology. In: Bradley WG, Daroff RB, Fenichel GM, Jankovic J, eds. Neurology in Clinical Practice. Philadelphia, Pa: Butterworth-Heinemann; 2004:763-780. 8. Editor and Publisher International Year Book: The Encyclopedia of the Newspaper Industry. 83rd ed. New York, NY: Editor & Publisher Co; 2003. 9. Itule BD, Anderson DA. News Writing and Reporting for Today’s Media. 6th ed. Boston, Mass: McGraw-Hill; 2002:10-41. 10. Sontag S. Illness as Metaphor. New York; NY: Farrar, Straus and Giroux; 1978. 11. Rosenberg CE. The Cholera Years: the United States in 1832, 1849, and 1866. Chicago, Ill: University of Chicago Press; 1962:36-37. 12. Kleinman A, Eisenberg L, Good B. Culture, illness, and care: clinical lessons from anthropologic and cross-cultural research. Ann Intern Med. 1978;88:251-258.
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Evaluation of Stigmatizing Language and Medical Errors in Neurology Coverage by US Newspapers JOSEPH J. CASPERMEYER, MS; EDWARD J. SYLVESTER, MA; JOSEPH F. DRAZKOWSKI, MD; GEORGE L. WATSON, PHD; AND JOSEPH I. SIRVEN, MD OBJECTIVES: To analyze US newspaper coverage of neurologic diseases to determine whether stigmatizing language is used in describing patients and examine its sources where found and to examine stories for medical errors. METHODS: A content analysis of newspaper articles was performed for 2003 using the Lexis-Nexis database. Keyword searches for 11 common neurologic conditions were performed for The New York Times and 8 regional newspapers with circulation greater than 200,000. RESULTS: A total of 1203 stories focusing on 11 neurologic conditions were recovered. Newspaper coverage did not reflect disease prevalence (rank correlation, ρ=–0.009; P=.98). The topics most covered were Alzheimer disease and other dementias (400 stories, 33% of total), which were eventually combined into 1 category for purposes of data analysis. Conditions with the highest prevalence were among the least covered topics, including migraine (34 stories, 3% of total) and head trauma (19 stories, 2% of total). Stigmatizing language was found in 15% of all stories. Excluding wire stories, the average among locally produced newspaper stories was higher (21%). Stories on epilepsy (30%) and migraine (29%) contained the highest frequency of stigmatizing language. Sources of stigma within a story included reporters (55%), patients (26%), family (17%), and physicians (16%). In an accuracy analysis, 20% of sampled stories contained medical errors or exaggerations, with half of these concerning neurodegenerative conditions. CONCLUSION: A total of 21% of all stories (excluding wire stories) contained language judged stigmatizing, with reporters as the most common source of the stigmatizing language. A total of 20% of analyzed stories had medical errors or exaggerations, the latter most often overstating treatment effectiveness.
used as the theoretical framework for our analysis of stigma. Goffman defined stigma as “the situation of the individual who is disqualified from full social acceptance.” Stigma commonly results from a transformation of the body, blemish of individual character, or membership in a despised or otherwise marginalized group. An inquiry into news media portrayals of individuals with neurologic conditions is relevant to understanding this burden. In particular, the print news media are the second most important For editorial source of medical information for the comment, see public after physicians and clinics.2 page 291 Thus, they have the potential to promote misconceptions about neurologic issues and particular brain disorders. Additionally, in previous print media studies, including those of the acquired immunodeficiency syndrome epidemic, mental health coverage, and epilepsy, stigmatizing portrayals of affected individuals have been numerous.3-6 In this study, we analyzed US newspaper coverage of neurologic diseases to determine whether stigmatizing language is used in describing patients and examine its sources where found. Our research additionally attempted to provide an overview of medical errors introduced into newspaper reports.
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METHODS
N
ormal brain function is strongly linked to the modern view of personal health and identity. Physicians consider the inalterable absence of such function, or brain death, sufficient to connote death. Conversely, in addition to the intrinsic biological burdens of disease, neurologists observe that some neurologic conditions present a further burden of morbidity by stigmatizing patients. Sociologist Erving Goffman1 provided a seminal discussion of stigmatization as “spoiled identity,” which will be From the Walter Cronkite School of Journalism and Mass Communication, Arizona State University, Tempe (J.J.C., E.J.S., G.L.W.); and Department of Neurology, Mayo Clinic College of Medicine, Scottsdale, Ariz (J.F.D., J.I.S.). Individual reprints of this article are not available. Address correspondence to Joseph I. Sirven, MD, Department of Neurology, Mayo Clinic Hospital 5W, 5777 E Mayo Blvd, Phoenix, AZ 85054 (e-mail: [email protected]). © 2006 Mayo Foundation for Medical Education and Research
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A content analysis for the prevalence of stigmatizing language and medical errors in neurology coverage was performed using the Lexis-Nexis database for newspaper articles in the calendar year 2003. Keyword searches in the top 11 categories of common neurologic conditions7 were performed for 1 major newspaper, The New York Times, and 8 regional newspapers that represented distinct ownership and geographic areas, each with a circulation greater than 200,000 (Table 1).8 One exception to exclusion of newspapers owned by the same media group is The Boston Globe, which is owned by Times Group Inc. This newspaper was included because of its regional importance for medical coverage. The potential readership of all combined newspapers exceeds 6 million. The most commonly accepted medical terms were used in the keyword search. Obituaries and stories that were business oriented or dupli-
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STIGMATIZING LANGUAGE IN NEUROLOGY COVERAGE IN US NEWSPAPERS
TABLE 1. Newspapers Selected for Study Newspaper
Circulation
The Arizona Republic The Atlanta Journal-Constitution The Boston Globe Chicago Sun Times Houston Chronicle The New York Times The San Diego Union-Tribune The Seattle Times The Virginia Pilot
Ownership group
448,782 (Monday-Saturday) 554,059 (Sunday) 460,672 (Monday-Saturday) 620,782 (Sunday) 448,044 (Monday-Saturday) 705,727 (Sunday) 313,692 (Monday-Saturday) 371,257 (Sunday) 552,052 (Monday-Saturday) 744,935 (Sunday) 1,055,512 (Monday-Saturday) 1,671,865 (Sunday) 373,344 (Monday-Saturday) 438,848 (Sunday) 215, 111 (Monday-Saturday) 473,010 (Sunday) 219,971 (Monday-Saturday) 233,993 (Sunday)
Gannett Co Inc Cox Newspapers Inc New York Times Co Hollinger International Inc Hearst Newspapers New York Times Co The Copley Press Inc Seattle Times Co Landmark Communications Inc
Data are from Editor and Publisher International Year Book: The Encyclopedia of the Newspaper Industry.8
cated by wire services were excluded from the data set. The stories recovered were then sorted for the 11 neurologic conditions. Because Alzheimer disease and general dementia almost always appeared together in stories, these 2 categories were conflated, and the final analysis was performed for 10 neurologic disease categories. The news articles were stratified according to the neurologic disease category and computer randomized within categories, and a disproportionate stratified sampling of the first 10 stories for each category was subjected to analysis for medical errors. Two neurologists (J.I.S. and J.F.D.) independently reviewed each of the stories and coded for accuracy. After independent review, they conferred to validate their accuracy. For the stigma analysis, a complete analysis of all stories was performed by one coder (J.J.C.), with another coder (E.J.S.) validating the selections. The 2 coders conferred to resolve discrepancies. Thus, findings for stigmatizing language reflect analysis of the full data set, whereas findings for medical errors represent the random sample stratified for each disease. STIGMA CODING Stigmatizing language was defined as wording that portrays the patient with the neurologic condition as socially undesirable, less desirable, or reduced in personal worth, following Goffman’s criteria. The researchers did not code for or judge in any way the accuracy of stigmatizing language. Using Goffman’s definition, accurate portrayals still may confer stigma on an individual or group. The stigmatizing source could be a physician, family member, patient, or reporter independently summarizing or making observations in the story. Mayo Clin Proc.
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ACCURACY CODING Coding for accuracy was based on disease risk, description of disease symptoms, and treatment. Exaggerating disease risk is when the risk of dying of the illness is overestimated. Underestimating disease risk is when the risk of dying of the illness is underestimated. Exaggerating disease was defined as presenting symptoms as more severe or not representative of most patients with the condition. Underestimating disease occurs when presenting symptoms are less severe or not representative of most patients with the condition. Treatment exaggerations are claims that a therapy was curative when less than a majority of the patients were able to control their illness or inaccurate claims that there were no adverse effects to a therapy. Finally, omission of key data is the announcement of a new treatment or scientific breakthrough with no further identification or explanation. KEY RESEARCH QUESTIONS OF THE STUDY The following research questions were addressed: Does the number of articles covered in each newspaper correspond to the overall prevalence or frequency of the disease? Do the stories published in each newspaper portray persons with neurologic diseases in such a way as to stigmatize them? Do the stories report accurately on medical issues, such as research and treatment advances, severity of disease burden, and morbidity and mortality? RESULTS Excluding business stories, obituaries, and editorials, 1203 stories pertaining to the top 11 major neurologic conditions were recovered for 2003, with Alzheimer disease and dementia then combined into 1 category, for a final total of 10
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TABLE 2. Correlation Between Prevalence of Disease in Population and Amount of Newspaper Coverage* Condition/prevalence per 100,000 population†
Percentage of total news stories (rank)
No. of news stories in 2003 (N=1203)
5-Year survival (%)
Migraine/2000 Epilepsy/650 Stroke/625 TBI (mild, moderate, severe)/600 Dementia/Alzheimer disease/250 Parkinson disease/200 Brain tumors/60 Multiple sclerosis/60 ALS/6 Creutzfeldt-Jakob disease/<1
2.8 (9) 9.8 (6) 13.2 (4) 1.6 (11) 14.1 (3)/19.2 (1) 14.4 (2) 5.4 (8) 10.3 (5) 2.4 (10) 6.6 (7)
34 114 158 19 171/229 177 65 128 29 79
99 95 60 60 5 95 20-60 76 0 0
*ALS = amyotrophic lateral sclerosis; TBI = traumatic brain injury. †Data are from Wallin and Kurtzke.7
conditions. Virtually no correlation (Spearman rank order coefficient, ρ=–0.009; P=.98) occurred between the frequency of story coverage and the prevalence of disease (Table 2). The most covered neurologic conditions were Alzheimer disease and other dementias (400 stories), accounting for 33% of all stories. Parkinson disease (177, 15%), cerebrovascular disease (158, 13%), and multiple sclerosis (128, 11%) rounded out the top 5 conditions and accounted for 72% of news coverage. Conditions with the highest prevalence, such as migraine headaches (34, 3%) and head trauma (19, 2%), were among the least covered conditions. Of neurologic conditions with a high mortality rate, Creutzfeldt-Jakob disease (79, 7%) had a higher number of stories than amytrophic lateral sclerosis, (29, 2%), which had the fewest stories. Although most articles contained no stigmatizing language, such language was found in 15% of the stories, and of these, there was an average of 2.0 stigmatizing phrases per story (Tables 3 and 4). Excluding wire stories from the story pool, the average among locally produced newspaper stories was higher (21%) (Tables 3 and 4). Descriptions of epilepsy (30%) and migraine (29%) contained the most frequent prevalence of stigmatizing language, followed by multiple sclerosis (19%), dementia (16%), amytrophic lateral sclerosis (14%), and traumatic brain injury (6%) (Table 3). Most of these phrases (64%) were found in stories with a patient-focused, narrative drive. Among the sources of the stigmatizing language, the most prevalent per article was descriptive language used by reporters (55%), followed by patients (26%) and family (17%). Such language was attributed to physicians in 16% of stories (Figure 1). Other sources combined for a total of 35%. Celebrities afflicted with a neurologic condition were featured in 12% of all stories, with coverage dominated by Pope John Paul II’s struggle with Parkinson disease (66%). 302
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In a stratified random sample of medical errors, representing approximately 10% of the stories in the population, 20% of stories analyzed had clear inaccuracies or exaggerations. This sample size obtains a 90% confidence interval and probability of rarest relevant instances of the occurrence of stigma and medical errors of 0.2 in the population of stories. Neurodegenerative diseases (Alzheimer disease or dementia and Parkinson disease) accounted for most errors. Most errors were exaggerations of parkinsonian symptoms or overstatements of the treatment effects of new therapies that had been tried only in animal models. DISCUSSION The research presented in this study addresses issues of newspaper coverage, use of stigmatizing language, and medical errors found in articles focused on prevalent neurologic conditions. The results indicate the inherent conflicts that result in the societal collision of news values and news judgment of reporters, health information dependency of the general public, portrayal of individuals with neurologic conditions, and the critical impact of language accuracy for physicians who treat those with such conditions. According to the Gallup Organization, television is Americans’ most frequent source of health and medical news.2 Yet, television was at the bottom of the “trusted” list. Gallup reported that the public has high exposure to television health and medical news but discounts its credibility. The Internet rated little better and was also near the bottom, even among 18- to 49-year-olds. Physicians are the most respected information sources, followed by books and magazines and newspapers; that is, newspapers are among the more trusted sources. Thus, issues of the number of newspaper articles focusing on a particular neurologic condition, accuracy of information reported, and prevalence of stigmatizing language found in newspaper stories may
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STIGMATIZING LANGUAGE IN NEUROLOGY COVERAGE IN US NEWSPAPERS
TABLE 3. Disease Comparison Summary for Stigmatizing Language*
Disease ALS
No. of stories with Total No. stigmatizing of stories references
No. of stigmatizing references
29
4
5
229
29
55
Brain tumors
65
7
14
Creutzfeldt-Jakob disease
79
4
18
Dementia
171
21
48
Epilepsy
114
19
33
Migraine
34
8
19
Multiple sclerosis
128
14
20
Parkinson disease
177
10
13
Stroke
158
9
12
19
1
3
1203
126
Alzheimer disease
TBI
Totals
240 (2.0 per story)
Stigmatizing sources (%) Patient (1); reporter (4); family (0); other physician (0); neurologist (0); other (0) Patient (12); reporter (26); family (7); other physician (3); neurologist (0); other (7) Patient (5); reporter (3); family (4); other physician (0); neurologist (1); other (1) Patient (6); reporter (5); family (0); other physician (2); neurologist (0); other (4) Patient (5); reporter (20); family (10); other physician (2); neurologist (1); other (10) Patient (15); reporter (4); family (3); other physician (0); neurologist (1); other (10) Patient (18); reporter (0); family (0); other physician (1); neurologist (0); other (0) Patient (7); reporter (1); family (2); other physician (3); neurologist (0); other (7) Patient (1); reporter (6); family (0); other physician (0); neurologist (0); other (6) Patient (3); reporter (4); family (0); other physician (1); neurologist (0); other (4) Patient (0); reporter (1); family (1); other physician (1); neurologist (0); other (0) Patient (32); reporter (32); family (12); other physician (6); neurologist (1); other (21)
Type of stigmatizing story (No. of stories)
Total No. of stories in which disease is not focus
Total % of stigmatizing stories†
News (0) Feature (4)
1
14
News (18) Feature (11)
50
16
News (1) Feature (6)
7
12
News (2) Feature (6)
2
5
News (10) Feature (11)
42
16
News (9) Feature (10)
50
30
News (0) Feature (8)
6
29
News (2) Feature (12)
53
19
News (7) Feature (3)
57
8
News (0) Feature (9)
65
10
Feature (1)
3
6
336
15
News (45) Feature (81)
*ALS = amyotrophic lateral sclerosis; TBI = traumatic brain injury. †Number of stories with stigmatizing references divided by the total number of stories minus the total number of stories in which the disease is not the focus.
have a disproportionate influence to that exchanged privately or used in less trusted media. Because readers trust newspapers to reflect accurate views about neurologic conditions, stories also may promulgate misconceptions about neurologic disorders. The lack of correlation found between disease prevalence and news coverage offers a particularly interesting avenue for further study because such discrepancies can mislead the Mayo Clin Proc.
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public about relative risks of particular activities or illnesses or where medical resources are most needed or directed. However, this discrepancy between coverage and prevalence fits a primary news value axiom—what makes news is most often the unusual. Also high on such news value lists for the reporter are conflict or controversy, impact (on a population or individual), human interest, and prominence of the story sub-
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TABLE 4. Newspaper Comparison Summary for Stigmatizing Language
Newspaper stories (excluding wire) The Arizona Republic The Atlanta Journal-Constitution The Boston Globe Chicago Sun Times Houston Chronicle The New York Times The San Diego Union-Tribune The Seattle Times The Virginia Pilot Total Wire stories Total stories
No. of stories
No. of stories with stigmatizing references
No. of stigmatizing references
Stories in which disease is not focus
Total % of stigmatizing stories
53 72 133 39 59 222 100 58 38 774 429 1203
9 9 16 7 9 20 14 10 6 100 26 126
16 13 33 12 13 30 25 17 15 174 66 240
16 25 41 18 14 75 49 21 7 266 70 336
24 19 17 33 20 14 27 27 19 21 7 15
ject.9 Thus, illnesses that heavily affect the lives of patients and their families and in which there are conflicts of treatment options are judged as having high news value, independent of the medical or scientific value physicians might assign the information. Add a prominent person to the mix or a subject engendering great fear but little actual risk, such as bovine spongiform encephalopathy (mad cow disease), and the explosion of stories on a subject that physicians might deem of little public value is predictable.5 Nevertheless, these stories may be all the more valuable to study for prevalence of errors and frequency of stigmatizing language. The stories themselves have presumptive impact, which makes them both artifacts and potential shapers of popular attitudes. The language used by reporters is that of everyday speech, the familiar, because they seek in large measure to reflect the views of the public to the public, perhaps especially important for physicians who wish to influence these views.9 Neurologic illnesses can enormously affect an individual’s overall health and societal well-being; thus, a substantial aspect of morbidity may be the stigma associated with neurologic disease. In certain instances, those with certain conditions may be seen primarily through the lens of the illness, or the ill person may be seen as diminished in personality or mind or pitiable.10-12 The disease has a “spoiling” effect on other aspects of a person’s identity, whereby the disease status becomes the person’s “master status”; that is, the disease becomes the “master lens” through which the individual is seen. The individual is perceived as unable to fulfill prior role requirements in relating to “normal” people and is “reduced in our minds from a whole and usual person to a tainted, discounted one.”1 Of 760 Gallup respondents questioned on the effects of various types of health stories, most said articles that included personal stories were more relevant to them.2 Per304
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sonal stories also enhanced respondents’ understanding of the topic covered. Most of the stories that contained stigmatizing language analyzed in our study involved material that included such personal accounts; thus, errors or stigmatizing language in these stories may be assumed to have effects intensified by high readership and reader involvement. Continued study of these issues may lead to improved public understanding of the nature and gravity of neurologic conditions in several ways. When medical professionals communicate among themselves about diseases, clinical words must retain their specific, precise meanings. However, when they communicate with patients and families, language must become less precise but more easily understood. The ways in which such ordinary language is used by journalists and the conferring of stigma noted in some stories can offer opportunities for physicians to improve their own communications—directly with patients and indirectly with the journalists who provide backup and reinforcement. Furthermore, identifying medical errors in newspaper stories can help journalists do their jobs better. The fact that patients were the second most frequent source of stigmatiz-
Neurologist
(2%)
Other physician
(14%) (26%)
Patient
(55%)
Reporter Family
(17%) (35%)
Other 0
10
20
30
40
50
60
Stories (%)
FIGURE 1. Sources of stigmatizing language in newspaper stories.
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STIGMATIZING LANGUAGE IN NEUROLOGY COVERAGE IN US NEWSPAPERS
TABLE 5. Fifteen Examples of Stigmatizing Language Found in Newspapers* Disease Amyotrophic lateral sclerosis Alzheimer disease or dementia Alzheimer disease or dementia Brain tumor
Brain tumor Epilepsy
Epilepsy
Migraine
Multiple sclerosis
Parkinson disease
Parkinson disease
Parkinson disease Stroke
Stroke Traumatic brain injury
Speaker or source
Statement(s) His speech is difficult to hear, as if coated with molasses, a symptom of a disease that has ravaged his motor skills and crippled his being. So far, both sisters have been good about covering their lapses.... Lxxx avoids conversations that she knows she can’t keep up with. The sisters admit they have thought of suicide. “I wanted him restored to himself. I wanted my father back. This old geezer made me mad.”
Reporter
Now 12, Axxxx is a good student with an outgoing personality. His parents have tried to teach their only child to cope with his disability, but sometimes it’s hard.... “There’s not a lot of things a blind kid can do that other kids want to do,” said Rxxx Pxxxx. “No one would take a meeting with me or anything. I was damaged goods, babe. That’s what was in the back of my mind, damaged goods. Can’t fit the American-male leading hero. A hero does not have a brain tumor.” For more than a century, the Jukes clan has been presented as America’s most despised family. Social science researchers long believed they were a case study of dysfunction, a bunch of genetically linked paupers, criminals, harlots, epileptics and mental defectives, whose care had placed a huge financial burden on taxpayers. “A lot of epileptics are not going to tell you they have it because they’re embarrassed or because the incidence of discrimination is huge.”... She says Rxxxx has told her that students have been seen in the back of a classroom, imitating the dramatic motions her body made when she had the seizure 18 months ago. Even as a young woman, she let her friends think she was an alcoholic rather than tell the truth. A woman with migraines was considered too uptight, too pushy, too assertive, back then, and Dxxx was a nice girl from the Midwest. “An attending surgeon said that I had no right to be going into medicine, because I couldn’t be accessible around the clock. You know, when an attending surgeon says that in front of the other residents, the residents just don’t treat you well.” (When Pope John Paul II’s Parkinson disease was disclosed) It was the first time a top Vatican official had publicly acknowledged the pontiff suffers from Parkinson’s.... The Vatican has never officially attributed the source of the pope’s trembling hands and slurred speech, typical symptoms of Parkinson’s. Twenty-eight years after he was told he had Parkinson’s disease, Mr. Ballard, creator of the country’s only graduate program in puppetry, no longer has control of his legs. But he can still drag himself from room to room, “if someone gets me going,” he said.... He had become, for a moment, a puppet. “The first year was so depressing. I cried every time I turned around,” she admits. “You see so many people with Parkinson’s, like Muhammad Ali, and you don’t want to end up like him.” (From a TV ad prepared by the Advertising Council, with voiceover by actress Sharon Stone) Stone says, “There’s something you should know about me. I’m cold. I’m calculating. I get what I want. If you get in my way, I’ll wreak havoc upon you. I can leave you weak. Limp. Twisted. Confused. If you want to live to see tomorrow, you answer to me, and you answer quickly.” The victims of strokes can be terrible puzzles, a torture to families, and sometimes an ordeal for the courts. It is here that Fxxx sets aside his grief and the comments from doctors who said his stepson would amount to no more than a vegetable. Most people might write Bxxxx off as hopeless when they see his fragile frame in a wheelchair. For many doctors and hospitals, patients with severe brain and spinal injuries are rejects....
Family
Patient Family
Patient Reporter
Family, other Patient
Patient, other physician Other
Reporter
Patient Other
Reporter Family, reporter
*Although all names appeared in the news stories cited, identifiers were removed from the table unless the individual had celebrity status. Statements in quotation marks are direct quotes used by a reporter. Statements not in quotation marks are either indirect quotes or the written copy of the reporter.
ing language offers an educational opportunity for physicians and support groups for each disease, particularly among the more highly stigmatizing diseases of epilepsy, migraine, multiple sclerosis, and dementia. Alerting journalists to the discrepancies between disease prevalence and disease coverage can offer them ideas for stories on the real impact of little-covered neurologic diseases on large numbers of readers’ lives. Finally, providing realistic portrayals of disability should aid in the construction of a healthy selfimage for patients and in shaping an informed image of them for those who have no personal contact with them. Of note, we made no effort to assign gradations across a broad spectrum of stigmatizing language (Table 5). For example, if a physician tells a patient that research indiMayo Clin Proc.
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cates that patients with this form of brain tumor have a median survival of 6 months, we would code that as an example of stigmatizing language. Such an individual might be refused employment for which he or she was otherwise well qualified, be pitied or shunned by friends, and be depressed and anxious about his or her prospects; in other words, he or she would be stigmatized by Goffman’s definition. However, one cannot argue that the physician should alter the diagnosis or that the reporter should omit it; one might say that the stigma inheres in the gravity of the illness and is conveyed through accurate diagnosis and reporting. Nevertheless, consider the same diagnosis reported differently as the reporter writes, “The physician said the patient has only 6 months to live.” This is inaccu-
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rate; whatever stigma burden may have been added to the disease by the diagnosis has been augmented by incorrect reporting. Such an error in medical fact with stigmatizing consequences would lie at the opposite end of such a spectrum from the first example. A middle category might be the most interesting area for further study: stories that contain no errors or exaggerations in which trained coders drawn from the public disagree about whether language is stigmatizing or not. Such a study would have to be much larger in scope; however, this middle group might offer the richest opportunity for discussion because public perceptions and attitudes are the foundation of the stigmatizing process. CONCLUSION This study was the first attempt to examine newspaper coverage of stigma regarding the most common neurologic conditions and to examine reporting accuracy. Neurologic health information provided to the public by newspapers continues to be compromised by issues of reporting accuracy (20% of all stories had medical errors or exaggerations). The common consequences for victims of stigmatization are real: social exclusion, financial hardship, and many forms of discrimination. Such attitudes may prevent individuals from seeking diagnosis and impair their willingness to access health care, thus contributing to the morbidity and mortality of disease. The social inequality of stigma was both reflected by and upheld by neurology coverage
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(21% of all stories). Stigmatizing biases toward persons with neurologic diseases persist, and all aspects of society (health care professionals, family, reporters) were among the sources of errors in neurology reporting. This examination of stigma and inaccuracy in reporting may serve to help identify factors that could improve physician-patient communication, patient attitudes toward various conditions, and reporter coverage of neurologic illnesses and general health care coverage. REFERENCES 1. Goffman E. Stigma: Notes on the Management of Spoiled Identity. New York, NY: Simon & Schuster Inc; 1963. 2. Lantz JC, Lanier WL. Observations from the Mayo Clinic National Conference on Medicine and the Media. Mayo Clin Proc. 2002;77:1306-1311. 3. Fuller LK. Media-mediated AIDS. Cresskill, NJ: Hampton Press; 2003: 43-62. 4. Karpf A. Doctoring the Media: the Reporting of Health and Medicine. New York, NY: Routledge; 1988:135-148. 5. Seale C. Media and Health. Thousand Oaks, Calif: SAGE; 2002:93-119. 6. Krauss GL, Gondek S, Krumholz A, Paul S, Shen F. “The scarlet E”: the presentation of epilepsy in the English language print media. Neurology. 2000;54:1894-1898. 7. Wallin MT, Kurtzke JF. Neuroepidemiology. In: Bradley WG, Daroff RB, Fenichel GM, Jankovic J, eds. Neurology in Clinical Practice. Philadelphia, Pa: Butterworth-Heinemann; 2004:763-780. 8. Editor and Publisher International Year Book: The Encyclopedia of the Newspaper Industry. 83rd ed. New York, NY: Editor & Publisher Co; 2003. 9. Itule BD, Anderson DA. News Writing and Reporting for Today’s Media. 6th ed. Boston, Mass: McGraw-Hill; 2002:10-41. 10. Sontag S. Illness as Metaphor. New York; NY: Farrar, Straus and Giroux; 1978. 11. Rosenberg CE. The Cholera Years: the United States in 1832, 1849, and 1866. Chicago, Ill: University of Chicago Press; 1962:36-37. 12. Kleinman A, Eisenberg L, Good B. Culture, illness, and care: clinical lessons from anthropologic and cross-cultural research. Ann Intern Med. 1978;88:251-258.
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