Perceived stigma among the patients of coronavirus disease-19 admitted at a dedicated COVID-19 hospital in Northern India: A cross-sectional study

Abstract

Background:

Coronavirus disease-related stigma started early in the pandemic with multiple media reports highlighting the discriminatory practices toward the health-care workers, patients, and survivors.

Materials and Methods:

A cross-sectional study was conducted in a designated COVID -19 hospital in Delhi from 22 October 20 to 21 November 20. All patients admitted to the hospital for more than 72 h were eligible for participation in the study. Anyone without a mobile phone and not able to read was excluded from the study. The data were collected using a pretested, prevalidated questionnaire.

Results:

One hundred and twenty-two (92.4%) patients answered the questionnaire. All patients were male. A total of 54 (44.26%: 95% confidence interval [CI] 35.3–53.5) COVID-19 patients blamed themselves for getting the infection, compared to 68 (55.74% 95% CI: 46.5–64.7) patients who believed that acquiring the disease was not their fault. There was a statistically significant association between feeling ashamed and blaming themselves for COVID-19 (P = 0.046). A total of 19 (15.6%) have reported that they have been told that getting COVID-19 is your fault.

Conclusion:

The stigma related to COVID - 19 needs to be tackled with multipronged strategy. In India, it is not a routine to assess mental health; however, the current pandemic has brought forward the importance of stigma and other related issues during the pandemic.

Coronavirus disease-19 (COVID-19) was declared “a pandemic” on March 11, 2020, by the World Health Organization.[1] As of December 24, 2020, after almost 10 months, there have been 79.05 million cases and 1.73 million deaths worldwide.[2] Social stigma is discrimination against a particular group of people, a place, or a nation in the form of a negative attitude. Public health emergencies (such as the COVID-19 pandemic) are stressful situations for people and communities. Fear and anxiety with a lack of knowledge about the disease can lead to social stigma. People are labeled, stereotyped, discriminated against, treated separately, or experience loss of status because of a condition's perceived link.[3] Similarly, public health interventions like social distancing itself carry the risk of increasing the stigma and result in “Othering” of the affected individuals. COVID-19 travel restrictions may also facilitate stigma and xenophobia by reproducing the social construction of illness as a foreign invasion, reinforcing social hierarchies and power inequities.[4] Discriminatory behaviors can negatively affect those with the disease and their caregivers, family, friends, and communities.[5] Several incidents of discrimination against the COVID-19 survivors, health-care workers, and patients have come up early during the pandemic.

In India, the doctors and paramedical staff working in COVID hospitals faced social ostracism and were asked to vacate the rented homes and even be attacked. Patients who died of COVID-19 were not allowed to conduct the last rites or burial for the deceased.[6] Similarly, the patient suffering from COVID-19 is a high-risk target for societal rejection and stigmatization in forms of discrimination, suspicion and avoidance by neighborhood, insecurity regarding properties, workplace prejudice, and withdrawal from social events even after being recovered and discharged from hospital.[7]

Much literature has been published on social stigma and COVID-19 in the form of perspectives, commentaries, and viewpoints. However, only a few studies vehave been done to address the exact nature of this issue. We aimed to evaluate the factors leading to social stigma and its effects on admitted patients of COVID-19 at a dedicated COVID hospital.

MATERIALS AND METHODS

The study was conducted as a cross-sectional study in a designated COVID-19 hospital in Delhi. Mild–moderate-to-severe cases of COVID-19 as per the ICMR management guidelines were admitted to the hospital.[8] The hospital's health-care services are maintained round the clock by a dedicated team of Doctors, nurses, and paramedics. The data were collected from 22 October 20 to 21 November 20. All patients admitted to the hospital for more than 72 h were eligible for participation in the study. Anyone without a mobile phone and not able to read was excluded from the study. The data collection was done using a questionnaire. The questionnaire consisted of two parts: sociodemographic variables and the other part was a questionnaire on social stigma. The questionnaire was prepared by experts from various fields, including an epidemiologist, clinical psychologists, and clinicians. The questionnaire was pretested in 20 patients. The data collected during the pretesting were excluded from the final analysis. The questionnaire was sent to the patient as a Google Form, and they were asked to fill it. In case of any doubt in the question, they can call the researchers. The study was cleared by institutional ethical clearance. The privacy and confidentiality of the data were maintained.

The data were exported to an Excel sheet from Google Forms. The continuous variable was defined as mean and standard deviation if they follow a normal distribution or as median and interquartile range if they do not follow a normal distribution. A Shapiro–Wilk test was used for normality.

The categorical variables were defined as numbers and percentages. Chi-square test was used for contingency tables. P < 0.05 was taken as significant. The analysis was done using Stata Statistical Software: Release 16. College Station, TX, USA: StataCorp LLC, StataCorp. 2017.

RESULTS

A total of 132 eligible patients were admitted during the period. One hundred and twenty-two (92.4%) patients answered the questionnaire. All patients were male. The patients' mean age (standard deviation) was 33.5 ± 8.9 years with a range of 21 years to 65 years. The mean duration of stay in hospital was 11.6 ± 3.1 days. The other sociodemographic characteristics are shown in Table 1. All the participants were employed in the government sector. Eleven (9.02%: 95% confidence interval [CI]: 4.6–15.5) patients felt ashamed after being declared COVID-19 positive. A total of 54 (44.26%: 95% CI: 35.3–53.5) COVID-19 patients blamed themselves for getting the infection, compared to 68 (55.74% 95% CI: 46.5–64.7) patients who believed that acquiring the disease was not their fault. A total of 52 (42.62% 95% CI: 33.7–51.9) felt that others are responsible for them getting COVID-19. There was a statistically significant difference in age of the patient who blamed others (35.75 [10.3] years versus 31.7 [7.4] years; P = 0.01). Twenty-six (21.3%, 95% CI: 14.4–29.6) participants answered in affirmative the change in behavior of family and friends. A total of 28 (22.95%, 95% CI: 15.8–31.4) patients had used alternative medications before getting hospitalized. There was no significant association between the patients' educational status and stigma [Table 2]. Similarly, there was no significant association between the social stigma and the patients' health-care worker status.

Table 1.

Sociodemographic characteristic of the patients

Characteristic (n=122)	n (%)
Sex
Male	122 (100)
Age
Mean±SD	33.5±8.9
Education
Up to 12 class	81 (66.4)
Graduation	30 (24.6)
Postgraduation	11 (9)
Health-care worker
Yes	17 (13.9)
No	105 (86.1)
Oxygen therapy
Yes	5 (4.1)
No	117 (95.9)
Symptomatic on testing
Yes	66 (54.1)
No	56 (45.9)
Duration of admission
Mean±SD	11.7±3

SD – Standard deviation

Table 2.

Association of social behavior with educational status, health-care worker status, and reason for testing

Social beliefs	Educational status				Health-care worker status			Testing
	Up to class 12th (n=81), n (%)	Graduation (n=30), n (%)	Postgraduation (n=11), n (%)	χ2 (P)	Health-care workers (n=17), n (%)	Nonhealth- care workers (n=105), n (%)	χ2 (P)	Asymptomatic (n=56), n (%)	Symptomatic (n=66), n (%)	χ2 (P)
Blamed themselves for their disease	33 (40.7)	18 (60)	3 (27.3)	4.7 (0.09)	9 (52.9)	45 (42.8)	0.6 (0.43)	24 (42.9)	30 (45.5)	0.1 (0.8)
Blamed others for their disease	32 (39.5)	16 (53.3)	4 (36.4)	1.9 (0.38)	5 (29.4)	47 (44.7)	1.4 (0.23)	23 (41)	29 (43.9)	0.1 (0.7)
Felt ashamed after being diagnosed with COVID-19	6 (7.4)	4 (13.3)	1 (9.1)	0.9 (0.62)	1 (5.8)	10 (9.5)	0.2 (0.62)	4 (7.1)	7 (10.6)	0.4 (0.5)
Has anyone told you the COVID-19 is your fault	15 (18.5)	2 (6.7)	2 (18.2)	2.4 (0.3)	6 (35.3)	13 (12.4)	5.8 (0.02)	5 (8.9)	14 (21.2)	3.5 (0.06)
Family and friends started behaving differently	5 (16.7)	3 (27.3)	18 (22.2)	0.7 (0.7)	21 (20)	5 (29.4)	0.8 (0.4)	15 (26.8)	11 (16.7)	1.8 (0.2)
Your behavior has changed	5 (16.7)	1 (9.1)	10 (12.4)	0.5 (0.8)	12 (11.4)	4 (23.5)	1.9 (0.2)	7 (12.5)	9 (13.6)	0.03 (0.9)

COVID-19 – Coronavirus disease-2019

The majority of health-care workers (52.9%) believed that they are responsible for their disease compared to nonhealth-care workers where the majority (44.7%) believed that others are responsible for their disease [Table 2]. There was a statistically significant association between feeling ashamed and blaming themselves for COVID-19 (P = 0.046). A total of 19 (15.6%) have reported that they have been told that getting COVID-19 is your fault.

DISCUSSION

Social stigma has different definitions. According to Erving Goffman, a Canadian sociologist, it is defined as “an attribute or behavior that socially discredit an individual by virtue of them being classified as the “undesirable other” by society.”[9] According to the WHO, stigma in the context of health is defined as “the negative association between a person or group of people who share certain characteristics and a specific disease.”[10] “Othering” is a philosophical concept described by Edmund Husserl as reductive action of labeling and defining a person as a subordinate in terms of category.[11] Historically, social stigma and prejudice have been associated with many infectious disease outbreaks such as tuberculosis, leprosy, human immunodeficiency virus/acquired immunodeficiency syndrome, severe acute respiratory syndrome, and Ebola. Mary Malon became infamous as “Typhoid Mary,” guilty of spreading the infection among affluent families, though she was unaffected. Even today, this is being taught in medical schools in the context of enteric fever. The concept of naming illnesses by the country or place of origin has been termed “epidemic orientalism” and is considered social labeling.[12] The President of the United States of America has frequently described COVID-19 as the “Chinese virus.” Social stigma can be conceptualized as an interplay of four elements that interact with each other.[13] COVID-19 is associated with all the elements of social stigma since the beginning of the pandemic. Anticipated stigma has led people to adapt practices that are harmful for prevention of COVID-19, for example, not getting tested for severe acute respiratory syndrome coronavirus-2 in anticipation of being positive. The fear of being judged by others is the perceived stigma.

Few patients have felt shamed, self-rejection (internalized stigma), and patients were excluded and discriminated against not only by the community members but also by their family members (experienced stigma).

This is the first study to assess the social stigma in hospitalized COVID-19 patients to the best of our knowledge. In the present study, there was no correlation between educational status and social beliefs; however, the study by Kelly et al. showed that having some level of formal education was associated with higher odds of stigma as compared to not having any formal education during the Ebola virus outbreak in Africa.[14]

This might be because there were no subjects without any formal education, and the majority of the study population was educated.

Five (4.10%) patients felt that they might lose their job after their employers would come toknow about their COVID-19-positive status. This is in contrast to 35.2% of people during the Ebola outbreak initially, and the numbers decreased to 1.3% over time.[14] In the present study, the subjects who blamed themselves for acquiring the COVID-19 also felt ashamed.

The stigma related to COVID-19 prevents the patients from getting proper treatment and influences policymakers to address the disease in the right way. Resourceful persons in terms of income, good mental health, education, or social support have been found out to be more knowledgeable about emerging diseases and hence would be less worried and be less likely to stigmatize.[15,16] Another important finding is that nearly one-sixth of the patients have been told that it is their fault. This can further worsen the situation. The attitude toward the patients and the knowledge about the disease can be disseminated by education, clear communication, and the utilization of non-discriminatory language, hence reducing social stigma.[17] Effective communication by national, regional, and local health-care services about the disease progression, its spread, and the preventive measures can effectively alleviate the fear in the communities. It will help in reducing the stigma related to the disease and the discrimination among societies.

It has been observed that the terms, which are used about a disease, for example, pagal (mad) for individuals with mental illness, can shape the perception of society about that disease. Making up of the terms for COVID-19 patients or any infectious disease increases the gap between the patient and the society instead of bridging it. Thus, it is critical to carefully choose these terms, especially the higher authoritative organizations making them universally adapted among everyone, be it medical professionals or ordinary people.[18] For example, “a person suffering from COVID” is more sensitive and appealing than “COVID positive,” recognizing and calling the patients as pandemic victims, rather than the “source.” Furthermore, the frontline COVID warriors require community support and encouragement rather than discrimination in society.

Stigma-mitigating strategies should involve the inputs from the COVID-19 survivors, who had a firsthand experience of the discrimination in their treatment journey. COVID-19 survivors included all those who either had suffered themselves or had their family members suffered from COVID-19. Furthermore, it included the COVID frontline warriors, who also had faced discrimination in society for taking care of those who contracted the disease despite risking their own lives. Moreover, the patients who recovered from the disease might give a ray of hope to others and help them come out with their symptoms instead of hiding them.

The stigma of getting a positive result was stopping the patients from getting themselves tested. The recovery stories of the survivors would encourage people to deal with this stigma.

This is when everyone in society plays an important role, the government, the frontline workers, the politicians, the media, and most importantly, the citizens. Everyone needs to act responsibly and do their jobs sincerely in fighting the pandemic and related stigma. Stigma can be worsened by insufficient knowledge. Hence, spreading knowledge about COVID-19 is the need of an hour. Social media is a double-edged weapon. Used responsibly, it is the best way to spread awareness, but its misuse can further deteriorate the situation.[19] Simultaneously, the newspapers focusing on an individual's role in spreading the disease, “the source,” play a role in creating this stigma in public. All such publications should be dealt with sensitivity. The Ministry of Health and Family Welfare, Government of India, has highlighted the importance of citizen's role in empowering the society to respond effectively and appropriately in the face of adversities.[20] Knowledge, attitudes, and practice (KAP) can be enhanced through community awareness.

CONCLUSION

Most of the countries are facing a problem in implementing an appropriate risk communication strategy to prevent COVID-related stigma. Currently, the world is not ready to handle one more pandemic of stigma. COVID-related stigma is a significant problem in the effective mitigation of the disease. This can be tackled by filling the knowledge gap between the general population and preventing fake news from spreading. In India, it is not a routine to assess mental health, especially during the current pandemic when all the health-care resources have been mobilized to manage COVID-19 patients. We need to formalize the system of mental health evaluation.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.