|Year : 2022 | Volume
| Issue : 2 | Page : 68-74
Social stigma and discrimination in Coronavirus Disease-2019 survivors and its changing trend: A longitudinal study at tertiary care center Gujarat, India
Rangdon Dor Sangma, Parveen Kumar, Lubna Mohammedrafik Nerli, Abhijit Madhukar Khanna, Disha Alkeshbhai Vasavada, Deepak Sachidanand Tiwari
Department of Psychiatry, M.P. Shah Medical College, Jamnagar, Gujarat, India
|Date of Submission||17-Jan-2022|
|Date of Decision||24-Apr-2022|
|Date of Acceptance||05-May-2022|
|Date of Web Publication||23-May-2022|
Rangdon Dor Sangma
No 2nd Floor, Trauma Building, Department of Psychiatry, MP Shah Medical College Jamnagar - 361 008, Gujarat
Source of Support: None, Conflict of Interest: None
Introduction: World Health Organization declared coronavirus disease-2019 (COVID-19) as global pandemic on March 20, 2020. Highly contagious nature of this new virus and high propensity for human-to-human transmission led to various challenges, one of them is stigma and discrimination. This led to ill-treatment, devaluation of affected individuals, termination of employment, abandonment, and physical violence. The current study attempts to assess the magnitude of social stigma and discrimination among COVID-19 survivors. Methods: Longitudinal study was conducted among COVID-19 survivors from June 2020 to February 2021 at tertiary care center, Jamnagar, Gujarat, India. Participants were contacted through telephone, interview was conducted at 1 and 6 months, using pro forma containing demographic details, “Stigma questionnaire” and “Discrimination questionnaire.” Results: A total of 420 participants of age 18–60 years participated in the study. Participants experienced personalized stigma had concerns regarding disclosure of illness and public attitudes. Discrimination at their respective workplace was also observed. Stigma was statistically significant related to gender and geographical area (F = 3.879, P < 0.05, R2 = 0.45), while discrimination statistically significant related to geographical area (F = 2.407, P < 0.05, R2 = 0.028). The stigma and discrimination was still prevalent after 6 months; however, there was a reduction in overall stigmatization which was statistically significant (P < 0.05). Conclusion: The large cohort of participants faced significant social stigma and discrimination in terms of personalized stigma, negative self-image, and workplace discrimination. Increasing awareness, knowledge about illness, and availability of treatment facilities can contribute in lowering the stigma.
Keywords: Discrimination, severe acute respiratory syndrome, stigma, survivors
|How to cite this article:|
Sangma RD, Kumar P, Nerli LM, Khanna AM, Vasavada DA, Tiwari DS. Social stigma and discrimination in Coronavirus Disease-2019 survivors and its changing trend: A longitudinal study at tertiary care center Gujarat, India. Asian J Soc Health Behav 2022;5:68-74
|How to cite this URL:|
Sangma RD, Kumar P, Nerli LM, Khanna AM, Vasavada DA, Tiwari DS. Social stigma and discrimination in Coronavirus Disease-2019 survivors and its changing trend: A longitudinal study at tertiary care center Gujarat, India. Asian J Soc Health Behav [serial online] 2022 [cited 2023 May 28];5:68-74. Available from: http://www.healthandbehavior.com/text.asp?2022/5/2/68/345792
| Introduction|| |
On March 20, 2020, the World Health Organization (WHO) declared a global pandemic as a large-scale epidemic originating from Hubei Province in China that had spread to several other countries. The disease was attributed to the novel virus of the Coronavirus family, and the acronym being coronavirus disease-19 (COVID-19). The highly contagious nature of this new virus and high propensity for human-to-human transmission renders it a serious public health risk. The clinical symptoms may vary from asymptomatic or mild respiratory illness to severe life-threatening respiratory or multi-organ failure. As the number of cases rose exponentially, the importance of public health workers at different levels also increased to tackle this health crisis. This led to various challenges while administering the health services, such as shortage of staffs, lack of basic infrastructure, lack of personal protective equipment, long working hours, and risk of infections. Added to this, the health-care workers were also faced with social stigma and discrimination that came along with this pandemic, hence affecting their morale, causing significant distress at work.
In India, there was an increase in prejudice based on race and class among the stigmas associated with the COVID-19 pandemic. Many perceived the individuals infected to be active spreaders. The previously infected individuals were also not spared from the prejudice. The ways of ill-treatment and devaluation of affected individuals, even health workers, were varied, from treating them as untouchables to restriction of movement, or calling them shrewd names. According to the WHO, social stigma is “negative association between a person or group of people who share certain characteristics and a specific disease.” It also goes on to say, “this may mean people are labeled, stereotyped, discriminated against, treated separately, and/or experience loss of status because of a perceived link with a disease” due to new unknown disease and the easiness to associate that fear with “others.” This leads to termination of employment, abandonment, and physical violence. This had a negative impact on the overall perception of the illness as well as the health-seeking behavior of the affected individuals. Lu et al. and Mahmoudi et al. observed significantly positive interrelationships between stigma, posttraumatic stress, depression, and insomnia, while mental health has a mediating effect on stigma. Current existing scientific literature lacks a longitudinal study that delves into the widespread stigma and discrimination with an already validated and widely studied instrument.
Hence in the current study, an attempt has been made to assess the magnitude of social stigma and discrimination among the people endured who were infected and recovered from COVID-19 in a tertiary care center in India.
| Methods|| |
Study design and participants
A longitudinal study was conducted during the COVID-19 pandemic from June 2020 to February 2021 at a tertiary care center Jamnagar, Gujarat, India. The consented participants of 18–60 years who were previously admitted and were discharged after recovery in a tertiary hospital in India were included in the study, while those with preexisting psychiatric illness and other contagious disease were excluded from the study. Oral informed consent was obtained from all the participants.
Sample size estimation
The sample size for the present study was calculated using Epi Info software (Centers for Disease Control and Prevention, Piedmont, North Carolina, United States) for proportion sample. The final sample size estimated was 420 using 95% confidence interval, 5% absolute precision, and after adjustment for 20% nonresponse rate.
The participants were contacted through telephone after acquiring their numbers from the registration desk of the hospital. The mobile numbers of participants discharged from the hospital from June 2020 to September 2020 were taken from the hospital and participants were chosen randomly. A telephonic interview was conducted at 1 and 6 months following their recovery and discharge from hospital, using demographic details, “Stigma Questionnaire” and “Discrimination Questionnaire.” The questionnaires were translated into the local language (Gujarati) and back translated into English by a language expert and validated.
Demographic details obtained were parameters such as age, gender, geographical area, marital status, educational status, and time since discharge.
Stigma questionnaire was employed from “12 item short version questionnaire for HIV stigma,” which explores domains such as personalized stigma, disclosure concerns, concerns with public attitudes, and negative self-image. Berger et al. demonstrated that this scale can be applied to the COVID-19 pandemic. Changes were made in the question phrasing to better adapt the questions to COVID-19 pandemic (e.g., “People I care about have stopped calling me after knowing I have HIV” was changed to “People I care about stopped calling after learning I have COVID-19”). The responses were then rated on a 4 point Likert scale (strongly disagree, disagree, agree, and strongly agree). Higher score demonstrates more stigma. Stigma questionnaire consists of four parts.
It is a three-item questionnaire to measure personalized stigma such as fear of rejection or losing a friend after knowing that the participant had acquired COVID-19 infection. The internal consistency of this subscale for the current study was 0.72 for the current study
It is three-item questionnaire to assess disclosure concerns like keeping the information a secret and fear that others might disclose the information regarding COVID-19. The internal consistency of this subscale for the current study was 0.73 for the current study.
Concern with public attitudes
It is a three-item questionnaire to measure the concern about people knowing that the participant had COVID-19 as to what people might think or how they would react. The internal consistency of this subscale for the current study was 0.73 for the current study
Three-item questionnaire to assess feeling of shame and guilt, or a negative feeling in general that one is not good enough or is unclean. The internal consistency of this subscale for current study was 0.62 for the current study.
Discrimination questionnaire was derived from Lee et al.'s severe acute respiratory syndrome (SARS)-related stigma questionnaire and Morioka et al.'s SARS questionnaire. The responses were then rated on a 4 point Likert scale (strongly disagree, disagree, agree, and strongly agree). Higher score demonstrates more discrimination. It consists of three parts.
Concerns after discharge
It is a three-item questionnaire adapted for COVID-19 pandemic to assess patient's worries after discharge in terms of relapse of the illness and the possible discrimination or prejudice that might await them. The internal consistency of this subscale for the current study was 0.66 for the current study.
Discrimination at workplace
It is a three-item questionnaire to assess discriminatory behavior faced by the participants like being told to take leave or impersonal mode of communication. The internal consistency of this subscale for the current study was 0.67 for the current study.
Discrimination at hospital
It is an additional single-item question added by the author to ascertain if there was any discriminatory behavior by the hospital staff observed by the participants during their inpatient stay. The internal consistency of this subscale for the current study was 0.59 for the current study.
Ethical approval for the present study was obtained from the Institutional Ethics Committee of M. P. Shah Government Medical College and Guru Gobindsingh Hospital, Jamnagar (Ref. No. IEC/Certi/73/03/2020).
The collected data were tabulated in Microsoft Excel and analyzed using statistical software Statistical Package for the Social Sciences, version 20.0 (International Business Machines, Armonk, New York, United States). Frequencies and percentage were computed for sociodemographics and stigma and discrimination experienced due to COVID-19. The data not following normal distribution were assessed by Kolmogorov–Smirnov test. Mann–Whitney test was used for comparing stigma and discrimination among different demographic variables. Multiple regression model was used to check the correlation and predictive value of independent variables (gender, geographical area, living status, marital status, and education) with dependent variables (social stigma and discrimination). Wilcoxon signed-rank test was used for comparison of social stigma and discrimination at 1st month and 6th month. P < 0.05 was considered statistically significant.
| Results|| |
A total of 420 participants of age 18–60 years with a mean age of 38.77 ± 11.85 years participated in the study. Most participants belonged to Hindu religion 360 (85.9%), followed by Muslim religion 60 (14.1%).
Out of 420 participants, 30 (14%) participants (18 were males and 16 belonging to rural area) dropped out at 6 months due to unavailability and inability to reach to their phone numbers. [Table 1] shows the demographic variables of the participants.
[Table 2] shows that there is a statistically higher stigma and discrimination among females and urban area participants in statements related to personalized stigma, concern related to disclosure and public attitude, and at workplace.
|Table 2: Stigma and discrimination comparison of demographic variables at 1st month after discharge from hospital (n=420)|
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There was no statistical difference observed among stigma and discrimination with respect to marital status, educational status, family type, and age group. Furthermore, no statistical difference was observed among stigma and discrimination during hospital admission among any of the variable.
Multiple regression analysis of social stigma and different demographical variables [Table 3] represents predictive certainty of 45%. Gender and geographical area in which participant residing emerged as statistically significant [F = 3.879, P < 0.05, R2 = 0.45, [Table 3]].
|Table 3: Multiple linear regression analysis of social stigma with different demographic variables|
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Multiple regression analysis of discrimination faced by participants and different demographical variables [Table 4] suggests poor predictive certainty of 2.8%, geographical area in which participant residing emerged as statistically significant.[F = 2.407, P < 0.05, R2 = 0.028, [Table 4]].
|Table 4: Multiple linear regression analysis of discrimination faced by participants with different demographic variables|
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[Table 5] shows that participants have experienced different stigma and discrimination in different domains. However, there was a statistical significant reduction in the overall stigmatization and prejudiced experienced as compared to the 1st month as denoted by Wilcoxon signed-rank test.
| Discussion|| |
The global prevalence of stigma and discrimination due to COVID-19 pandemic was clearly evident even in India, regardless of whether they were infected or suspected to have been infected. The current longitudinal study observed that a large cohort of participants faced significant social stigma and discrimination of varied forms. The experience of stigmatization was prominent in terms of personalized stigma, which addresses the perceived consequences of other people when they get to know about the participant's COVID-19 status. The personal experience of the participants was taken into account like fear of losing support of their close friends and neighbors, and their negative attitudinal reaction toward them. Gopichandran et al. in their qualitative study of COVID-19-related stigma reported that their participants faced personalized stigma. The neighbors who were previously helpful to the participants were not supportive and did not provide any assistance when they were diagnosed as COVID-19 positive.
The current study observed that many people tried to keep their COVID-19 status a secret, were very careful whom they disclosed the information and because they perceived it as a risk. The item explores how much the participants wanted to control the information and exercise extra caution in telling others about their COVID-19 status. Bhanot et al. (2020) observed there was prevailing fear of being shamed or an inevitable social boycott as a consequence of being labeled as a COVID positive person. The rampant misconception that COVID-19-infected individuals are impure or unclean was also explored (what most people would think of someone who is already infected with COVID-19). The result obtained gives insight into the overall negative perception about the people suffering, or who have recovered from the COVID-19. Choi observed that some people have experienced racist attacks and aggression owing to such beliefs. Bhattacharya et al. in their study noted that the people infected with COVID-19 were given numerous tags like “Super-spreaders” by the community.
The current study observed that people reported feeling guilt and shame due to their COVID-19 positive status and how people's attitudes affected them. Worries and concerns of what awaits after one is discharged from a COVID-19 hospital or quarantine center were also observed. Gopichandran et al. observed that majority of the people felt lonely, angry, helpless, anxious, and humiliated after having been diagnosed as COVID-19. Morioka et al. observed that people were deeply concerned regarding relapse of COVID-19 as well as being exposed by the media regarding their COVID-19 positive status. In a similar study of negative self-image in people living with HIV-AIDS, Mo and Ng found that many people felt guilt and shame for being infected with HIV as they held themselves for their infection.
The current study observed that the participants experienced significant discrimination at workplace. Many participants from urban areas reported that they were told to take leave from their respective workplace owing to their previous history of having acquired the COVID-19 infection. The workplace experiences of many were in the form of unpleasant verbal remarks which were perceived as hurtful and impersonal modes of communication (phone calls, text messages, etc.) which substituted for face-to-face communication. Similar results were reported by Lee et al. and Morioka et al. during SARS and Gopichandran et al. during COVID-19 outbreak.
The current study also observed that the urban population had statistically significant stigma and discrimination as compared to the participants hailing from rural areas in domains such as personalized stigma, disclosure and concerns regarding public attitude, concerns after discharge, and discrimination at workplace. Zhang et al. reported statistically significant anxiety regarding COVID-19 among urban population than rural population. In addition, urban residents were less likely to advise people when it comes to seeking appropriate medical and health care if they displayed any COVID-19-related symptoms. James et al. reported similar findings in the assessment of Ebola-related stigma in Sierra Leone, West Africa, where urban population were more prone to stigmatizing behavior than the rural population. The results could be due to that urban population owing to the fact that there was restricted movement, disruption of daily activity, and deaths in the neighborhood.
The current study showed that the male participants reported statistically significant stigma and discrimination as compared to female participants in domains such as personalized stigma, concern related to disclosure, negative self-image, and public attitude. Supporting the current study finding, Yuan et al. also concluded in his study that male participants reported statistically significant stigma and discrimination than controls. Dar et al. also found that the stigma and discrimination were statistically significant in males as compared to females. The current study did not find any statistically significant difference in the stigma and discrimination in relation to the participant's various educational statuses. This finding is partly in line with other studies like Dar et al. where education was not associated with a significant stigma score. Furthermore, another study on the assessment of HIV-related stigma by Kamitani et al. was not consistent with the educational status of the participants.
The current study did not observe a widespread stigmatization in the health-care setting by the health-care personnel, unlike one observed by Almutairi et al. during Middle East respiratory syndrome outbreak. Furthermore, this study is partly in contradiction to a study by James et al. in which the patients infected with Ebola virus were reported of health-care neglect (negative attitudinal response by health-care professionals).
The current study observed that the stigma and discrimination were still prevalent after a scheduled interview at 6 months. However, there was a statistical significant reduction in the overall stigmatization and prejudiced experienced as compared to the 1st month. According to Lin, positive and supportive information about COVID-19 in various social media platforms has a significant impact on the outcome of the pandemic and may lower fear and stigma associated with it. The reason could be the increased awareness, improved health services, and the commonness of the disease.
The study was limited to a single center. Being a telephonic interview, establishing rapport was a challenge since there was still rampant mistrust regarding the health delivery system during the first wave of COVID-19. Furthermore, various needs, beliefs, and cultural perspective of the participants were not explored.
| Conclusion|| |
The large cohort of participants faced significant social stigma and discrimination in terms of personalized stigma, which addresses the perceived consequences of other people when they get to know about the participant's COVID-19 status. The personal experience of the participants was taken into account like fear of losing support of their close friends and neighbors, and their negative attitudinal reaction toward them. The stigma and discrimination were still prevalent after a scheduled interview at 6 months. However, there was a statistical significant reduction in the overall stigmatization and prejudice experienced as compared to the 1st month. Increasing awareness, knowledge about the illness, and availability of treatment facilities can contribute in lowering the stigma.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]