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The Unending Cycle of Stigma and its role in a Patient's Journey

Stigmatization hinders health-seeking behavior, foments fear in patients suffering from the condition, causes prejudices against certain social groups, and can also lead to violence against the stigmatized groups. Multiple historical instances serve as the testament of stigma around many infectious diseases. After the outbreak of SARS, Chinese communities in New York's Chinatown were labeled as dangerous, diseased, and inferior. In the 1892 cholera epidemic, President Harrison tagged immigrants as “a direct menace to the public health,” singling out Russian Hebrews, and U.S. immigration policies were made more restrictive. South Africa saw increased violence and xenophobic activities in wake of TB and HIV spread in late 2000’s. In India, the stigma around Hanson Disease or leprosy led to the social abandonment of the patients even after the patients were completely cured.

COVID19 too has seen its share of acts that have the potential to create stigma and hamper efforts to check the infection. Some of them are:

  • Wuhan/Chinese "Virus": Leaders of many countries and also media to some extent have created a Chinese persona for the virus, putting the entire Asian community at risk of identity-based discrimination

via Twitter

  • Quarantine Markers: Indian authorities started stamping people, arriving into the country, on their hands, with an identification mark but instead it served to signal the individuals as carriers of the infection

  • Migrants/Immigrants Crisis: Migrants traveling within or across country borders, and trying to reach their home are being seen as "carriers" of the virus

  • All non-Vegetarians: Communities and individuals having certain food preferences are being advised to change habits even when there has been no scientific evidence that all non-vegetarian food items carrying the risk of coronavirus.

via The Economist

via The Week

In a pandemic environment, characterized by non-definitive cause and a fatal outcome, anxiety brews quickly and strongly. Anxiety propagates as a fear where it is unclear what one is afraid of and what to do about it. Coping with the unknown then requires the creation of a known. Individuals gravitate to judgment heuristics built on traditional stereotyping or generating a new stereotype. Attribution thus becomes a mode to quell the anxiety and gives rise to the stigma identity- your action or something about who you are, disqualifies you from continuing your social role. Stigmatization can then be seen as a signal detection problem where the signaled cues for the infectious disease are imperfect; thus, it could be less costly to avoid those who appear to be sick or show signs of the misconceived identity even if they are not. And an individual starts evaluating false positives less favorably than false negatives. Many infectious pathogens provide less than perfect cues to their presence and this gives rise to a disease avoidance system biased towards false positives. Individual(s) is/are stigmatized when they are attributed with a misconceived identity or indicators which lead to them being ostracized by members of the larger society within which they live and function. For stigma to occur, the public must first identify the difference and then label the difference between us and them.

The different types of stigma that are relevant during a pandemic are:

  • Public stigma: Public endorsement of prejudice/discrimination towards an infected individual/group

  • Self-stigma/Perceived Stigma: Individual internalize public stereotypes/ prejudices and applies them to his or her life

  • Structural stigma: Public and private sector policies that unintentionally restrict opportunities of the minority group

  • Courtesy/Associated stigma: The stigma experienced by those who are in close contact with the stigmatized group (mental health workers, friends, family)

  • Automatic stigma: Stigmatizing thoughts, feelings, and behaviors that occur automatically with little or no conscious awareness

  • Double stigma or multiple stigma: Stigma which is compounded by membership in more than one stigmatizing group

The fallouts from such discrimination are severe: poor access to mental, and physical healthcare, reduced life expectancy, exclusion from social circles, increased risk of indulgence in anti-social behavior, victimization, poverty, and homelessness. Individuals internalize guilt and blame for having this disease, are psychologically affected by stigma and tend to isolate themselves Many describe these consequences worse than the experience of the disease itself. Stigmatization of infectious diseases can impede prosocial health-seeking behavior. Some of the fallouts in a patient’s journey caused by stigma can be seen in treatment, adherence, and disclosure or reporting.

1. Testing:

  • This is one of the foremost steps to identify and contain the spread of infectious disease. The perceived stigma around the condition leads to anxiety and fear, leading to avoidance or delay in testing

  • The perceived stigma supplements the anticipated fear of receiving a positive result

2. Treatment and Adherence

  • Presence of associated stigma affects healthcare workers who are involved in the patient care and hampers the treatment

  • Uptake of preventive measures is low in anticipation of the stigma that could arise by adhering to preventive actions which might act as a signal for the disease/condition

  • The stigma associated with infectious disease creates wrong and misaligned mental models, as individuals/groups who do not fit the misconceived patient-identity discount the risk and engage in risky behavior

3. Disclosure/Reporting

  • Stigma creates fear of rejection, hostility, and violence and reduces an infected person’s desire to share his/her status with his/her family and friends, leading to mental stress, delay in treatment, and increased risk of transmission

What might work? And how it can be improved

Interventions to root out stigma around infectious disease take different forms. Some address the origins of the stigma mainly observed in reducing public stigma which involves stereotypes, prejudice, and discrimination perpetuated by the general population. A few intervene to manage the stigma among stigmatized individuals. While others are aimed to bring structural changes through the use of advocacy, legislation, and punitive measures.

Some interventions that have tried to address the stigma associated with various infectious diseases:

  • Contact interventions have been used to correct misaligned and preconceived notions about the disease condition through interactions with individuals who have successfully overcome the condition.

  • Counseling programs/facilities were provided during the SARS epidemic to recovered patients to help them manage the anticipated stigma

  • Community initiatives like the “TB clubs”, “Anti-AIDS clubs” who in addition to general public outreach activities, provided a platform for mutual support and information exchange for their members

  • The Memory Project in Uganda catered to the psychosocial needs of the children affected or infected with HIV by bridging communication gaps with their families, helping in disclosures, succession planning and writing important family history in a memory book

  • The National Alliance for Mentally Ill (NAMI) has an email alert system that notifies members about stigmatizing representations of persons affected in the media and provides instructions on how to contact the offending organization and its sponsors

Like other infectious diseases, the coronavirus pandemic too poses tremendous risks of stigma around it. Some important behavioral levers that can be used to better inform and address this issue are:

1. Coping

  • Helping individuals to disengage their psychological evaluation of self from the disease and addressing practices of self-silencing and self-negation

  • Helping individuals build planning capacity to manage the disruption threats associated with the disease which may be loss of life, loss of income or loss of family time

  • Support groups help in reducing anticipated isolation & rejection and also provide successful stories as precedents

2. Anonymity/Confidentiality

  • Making patients themselves see the anonymity and confidentiality elements of the procedures improve patient's trust and perceived control on their status disclosure

3. Identity and Attribution

  • Prohibiting the creation of a disease persona rooted in geography, ethnicity, religion, or race can mitigate categorical social cognition from a society experiencing threat, ambiguity, and uncertainty.

4. Empathy Fatigue

  • Engaging with family members, friends, and co-workers who feel distressed due to close proximity to suffering

5. Expectation Management

  • Managing uncertainty among patients by setting the right expectations and helping rectify the wrong notions

  • Updating misbeliefs in communities by encouraging contact between cured patients and the larger public

6. Interpersonal Empathy Gap

  • Creating a platform for storing and sharing first-person accounts during the pandemic can reduce the temporal distance with the victims/patients by correcting for imagined elements around the condition

  • Leveraging public figures or celebrity influencers affected by COVID19 directly or indirectly, like Pink or Tom Hanks, can improve reduce the empathy gap and increase social acceptance

Addressing stigma around coronavirus or any other infectious disease requires participation from all the stakeholders operating in society. Stigma reduction is a long term process and investment in it can lead to sustained social welfare.



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