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«INFECTIOUS DISEASES AND SOCIAL STIGMA Stigma creates a barrier between the sick and the rest of society JOAN WILLIAMS, that prevents them from acting ...»

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Open Access Research Journal Medical and Health Science Journal, MHSJ

www.academicpublishingplatforms.com ISSN: 1804-1884 (Print) 1805-5014 (Online) Volume 7, 2011, pp. 2-14


Stigma creates a barrier between the sick and the rest of society JOAN WILLIAMS,

that prevents them from acting on their instinctive desire to seek DIEGO GONZALEZ-MEDINA, curative treatment that will enable them to reenter into their every


day social activity. For these ailing persons, the cost of being stigmatized far outweighs the desire to rehabilitate their lifestyle.

Further, social stigma associated with infectious disease Seattle University, USA undermines the overall health of society, and the effectiveness of community efforts to offer unabridged healthcare services to treat and prevent the spread of communicable disease. In the wake of the latest pandemic influenza outbreak, the global community witnessed how under the stress H1N1, communities, regions, and countries can suffer socially and economically. Our research finds a statistically significant relationship between infectious disease and social stigma. We also identify the role the media plays in exacerbating this issue, and address preliminary policy implications to mitigate these issues in the future.

Keywords: Stigma, influenza, public health, infectious disease, pandemic.

UDC: 316.647.8:616.9 From Chile, where sports officials declined to host Mexican soccer teams, to China, where the authorities forced even healthy resident Mexicans and Mexican travelers into quarantine, Mexicans say they have been typecast as disease carriers and subjected to humiliating treatment.

The New York Times (Lacey et al., 2009) If unfortunately, I got infected again, I would prefer hiding myself in a secret place and waiting for death rather than going into the hospital. The discrimination against us is really horrifying…I prefer hiding myself rather than going into hospital if I get infected with bird flu. I do not mean to be irresponsible, but one stigma is already too heavy for me, and I cannot afford to bear an additional one.

SARS victim (Siu, 2008) Introduction For centuries, the fear of the unknown and unfamiliar has created justification for the exclusion and disenfranchisement of those with medical conditions for which there seem to be no apparent remedy. Time and experience has also revealed that despite the development of cures for diseases once thought to be terminal, the shadow cast by disease related stigma is not easily lifted with increased knowledge and medical technology. Media reports combined with common myths and misconceptions crystallize public fears and serve to justify drastic measures to contain disease (and its carriers, actual or supposed).

The ends justify the means attitude has transcended our past and penetrated into our contemporary societies. The consequences of our actions are an afterthought as scholars seek to diagnose and treat the root cause of this malady - social stigma. Identification of any disease, even briefly with a particular group, country, race, ethnicity, or lifestyle creates a false causal relationship between those associated with a particular category and the disease. The “us”, majority, vs. “them”, minority, mentality drives harmful behaviors detrimental to the community and population as a whole.

Most recently we have witnessed how, with H1N1, naming a disease by country of origin serves to emphasize its “other” aspect and make repressive policies more politically palatable (Perry et al., 2010). Society's stigmatizing behaviors is justified as a means of protecting the masses from a select few. According to Gilmore et al. (1994), the © 2011 Prague Development Center -2Medical and Health Science Journal / MHSJ / ISSN: 1804-1884 (Print) 1805-5014 (Online) establishment of the “other,” is one of the core characteristics of stigma. Stigma is defined as having four characteristics. First, a condition must exist which causes a stigmatizing response, and to be effective, the condition is either controllable by and/or spares the stigmatizer. Second, those stigmatized must be able to be distinguishable from others based on a certain characteristic, physical or otherwise. Third, stigmatized individuals must be able to be associated with the condition. And fourth, stigmatizing reactions must create distance between the stigmatized and the stigmatizers; thereby creating the “us” vs. “them” categorization and isolating “the other” - empowering “us” and creating a sense of powerlessness and impotence in the “other.” For example, during the SARS outbreak, China received a substantial amount of blame from American media.

This was best captured by a Newsweek article which proclaimed that “the battle will be shaping up between China’s tradition [e.g. the taste for freshly killed meat] and the world’s safety” (Eichelberger, 2007, p.1287).

The instinctive behavior for groups of people having common interests or sharing geographic location is germane to the establishment of functional societies. They reinforce the collective strength of individuals with similar objectives and thought patterns, and confirm the inability of a sole individual to exist without reliance on the resources or collaboration of others. Communities are a powerful means of attaining association and belonging. Therefore, it takes a community to stigmatize - otherwise it would be indistinguishable from individual prejudice (Gilmore et al., 2010), and so would not carry significant weight, power, and authority. It follows, that stigmatizing perceptions must be held by a dominant group. In their analysis, Link et al. (2001) contend that stigma cannot occur without the exertion of power. They conclude that “stigma exists when elements of labeling, stereotyping, separation, status loss, and discrimination occur together in a power situation that allows them” (p.377). Looking back in time we find that communities have used their collective power and authority to banish the diseased, and the afflicted to the fringes of society where they are left - labeled as outcasts.

Infectious disease is one the most common conditions associated with stigma. Cogan et al.

(1998) contend that diseases are more likely to be stigmatized under four unique circumstances: First, when the cause of the disease is considered to be the fault of the infected individual; second, when the disease is considered to be terminal and degenerative; third, when the disease is considered to be contagious and detrimental to others; and finally, when the disease is physically apparent. When these observations are applied to communal behavior - disease related stigma is rationalized to maintain the health and strength of the community. Consistent with the findings of their research, Baral et al. (2007) find that communicable diseases in particular are associated with stigma and discrimination. To perpetuate their strength and increase chances of survival the larger priority of community is to sustain the masses - extricating anything or individual that can be clearly identified as a source of the demise of their communal way of life by spreading infectious disease.

The most recent H1N1 outbreak was characterized and treated as being extremely contagious. In a June 2009 emergency meeting, [the] World Health Organization (WHO) classified the H1N1 outbreak as “pandemic;” an epidemic of infectious disease that is spreading through human populations across a large region; for instance a continent, or even worldwide (BBC, 2009). The media coverage of H1N1 was pervasive, and momentum was fueled with each official update regarding the increased number of cases and related fatalities. Although the media coverage was helpful and served as a means to educate the public, the extensive media coverage also incited fear, and created an environment ripe for stigma. Most effected were individuals who were from or who were perceived to be from Mexico (where cases were first reported). Those appearing to have physical symptoms of the virus (albeit due to common allergies) were also stigmatized.

From the perspective of those infected or perceived as being at risk of infection, stigma includes shunning, marginalization, and rejection (Lee et al., 2005).

© 2011 Prague Development Center -3Medical and Health Science Journal / MHSJ / ISSN: 1804-1884 (Print) 1805-5014 (Online) Although in the midst of a pandemic outbreak, stigmatizing behavior may almost seem intuitive, studies show that disease related stigma increases the burden of disease and compounds psychological suffering. It can adversely impact the course of disease or outcome of medical treatment, and could also, in extreme cases, lead to violence. Last year in the wake of the H1N1 outbreak the Business Insider (2009) documented a brawl on a New York subway brought on by a woman's failure to cover her mouth while sneezing.

To the unassuming, being subject to infectious disease beyond the scope of their control is threatening and intrusive. It imposes or inflicts the burden of another's disease on them and potentially their family.

A study of stigma is pertinent to disease prevention due to the damaging effects it can have on efforts to mitigate infectious disease. Most notable are the insurmountable barriers stigma raises for those seeking or in need of healthcare, which minimizes the net effects of preventative measures and exacerbates the spread of disease (Barrett et al., 2008). This paper investigates the correlative relationships between infectious disease and stigma; and applies lessons learned from the 2009 H1N1 outbreak as a case study to consider appropriate policy implications that may ensue.

The paper is organized as follows. Section one provides an introduction. Section two surveys the literature. Section three discusses the data. Section four reveals the regression results. Section five shows stigmatizing effects of the media. Section six concludes.

Literature review

We begin with some studies on the SARS outbreak in the early 2000s. Lee et al. (2005) study the experience of SARS-related stigma in Hong Kong in 2003. Their findings provide significant insight into the lives of those stigmatized in the focal point of the SARS epidemic where residents were, marginalized in their work, social, and even their home environments. They observe that SARS impacted most residents and the resulting felt stigma was associated with high instances of emotional distress. Because of its pervasiveness, efforts to circumvent stigma varied with gender, age, education, occupation, and perceived risk factors for SARS - such as residential location. Diverse strategies were undertaken to mitigate the harmful effects of stigma as observations reveal “that public stigma is driven by lay beliefs, emotional responses, and lacks a knowledge base. Education makes little difference to making the public more accepting of conditions that are aversive to their lay beliefs” (Mak et al., 2006, p.1920). Even healthcare professionals confess to avoiding patients with SARS, reinforcing the idea that “knowledge about the disease had no significant effect on stigma” (Mak et al., 2006, p.1912).

Not only is stigma pervasive, but Siu (2008) finds that it tends to be lasting. In the study on SARS victims in the post-SARS era in Hong Kong, Siu reports that SARS-related stigma does not decrease over time. Victims continued to suffer its demeaning effects during follow up visits to medical clinics, and within the contemporary Hong Kong society.

In an analysis of the comparative stigma of HIV/AIDS, SARS and Tuberculosis in Hong Kong, Mak et al. (2006) reveal attributional correlations of stigma to infectious disease.

Controllability, responsibility and blame for having the disease were applicable factors in the explanation stigma of all three diseases. Also, they find that knowledge of the disease does not significantly affect stigma. Goodwin, et al. (2009) examine the behavioral and attitudinal responses to H1N1 in Europe and Malaysia and find that specific groups (i.e.

homosexuals, homeless, prostitutes) are perceived to be at higher risk and could therefore experience greater prejudice during pandemics.

Des Jarlais et al. (2006) find that educational level is strongly associated with endorsement of stigmatizing behavior. For example, their data shows that when asked whether gay men should be forcibly checked for AIDS or alternatively, whether Chinese should be forcibly checked for SARS, 77.9% of respondents with less than a high school degree agreed, © 2011 Prague Development Center -4Medical and Health Science Journal / MHSJ / ISSN: 1804-1884 (Print) 1805-5014 (Online) compared to 17.4% of those with a graduate level education. The findings strongly support that negative emotions arouse similar stigmatizing reactions when comparing the two diseases and that education level may play a role in stigma-forming reactions.

Three months after the peak of the 2003 SARS outbreak in Hong Kong, Lee et al. (2005) conducted a cross-sectional analysis of the public attitudes towards SARS by evaluating survey responses reflecting avoidant and imposing attitudes independently. Indicative of stigma, they find avoidant and imposing attitudes to be significantly correlated. Odds of highly imposing (stigmatizing) attitudes increase significantly for respondents who were middle aged, higher earning, employed and were worried about contracting SARS. Overall, they find employment status to be the most significantly correlated to imposing and avoidant behavior. Housewives report the most avoidant behavior; and the unemployed reflect the most imposing attitudes. These research findings are intuitive as employment status is fundamental to the establishment and continuum of livelihood. The spread of terminal infectious disease threatens the potential to earn income and thereby diminishes the ability to consume goods, services, entertainment, etc. significantly reducing quality of life.

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