Investigating stigma during the COVID-19 pandemic: Living conditions, social determinants and experiences of infection among employees at a tertiary referral cancer centre

Aim Healthcare workers (HCWs) have reported negative social experiences during the COVID-19 pandemic; however, this data is largely from medical personnel. We examined living conditions, social determinants, and experiences during the COVID-19 pandemic among all cadres of employees who had recovered from COVID-19 at a tertiary referral cancer hospital in India. Methods We conducted a mixed methods study combining a questionnaire-based survey followed by semi-structured interviews with open-ended questions, among hospital staff who recovered from COVID-19 between April and November 2020. We initially administered a 79-point survey to all participants; based on their responses, we used purposive sampling to identify 60 interview participants. The primary aim of the study was to examine the impact of socio-economic factors on experiences and potential stigma faced by staff during the COVID-19 pandemic. Results We surveyed 376 participants including doctors (10 %), nurses (20 %), support staff (29 %), administrators (18 %) and scientists/technicians (22 %). Of these, 126 (34 %) participants reported negative social experiences. Stigmatisation was lower among doctors compared to other professions, decreased in the second half of the study period, and was more among those living in less affluent surroundings. Interviews revealed 3 types of negative social experiences: neighbourhood tensions around restrictions of mobility, social distancing, and harassment. Conclusions The first phase of the COVID-19 pandemic in India led to considerable negative social experiences among hospital employees, especially those lower in the socio-economic hierarchy, which was fuelled by restrictions imposed by the government and pressure on local neighbourhoods. Policy summary It is important to not just document and count stigma experiences during global pandemics, but also to examine sociologically the conditions under which and the processes through which stigma happens.


Background
Healthcare workers (HCWs), especially those who acquired COVID-19, have reported negative social reactions and various forms of stigmatization during the pandemic [1][2][3][4]. These reactions took several forms including avoidance, isolation and harassment. The aim of this study was to examine the living conditions, social determinants, and experiences during the COVID-19 pandemic among employees who recovered from COVID-19 at a large tertiary referral cancer hospital in India, which was designated as a COVID-19 care centre for cancer patients.

Methods
This was a mixed methods study involving a questionnaire-based survey followed by semi-structured interviews. The study was approved by the Institutional Ethics Committee and registered with the Clinical Trials Registry of India (CTRI/2020/09/028090). From administrative records, we identified staff at the hospital who had recovered from COVID-19 between April and November 2020. We included those employees who could understand English, Hindi or Marathi and who consented for participation. Participants were initially administered a questionnaire-based survey with 79 individual points. Among these, we used purposive sampling to choose 60 employees for participation in semi-structured interviews. The interviews, ranging between 20 and 40 min, were conducted by trained research assistants using an interview guide, in the language best understood by the participant. In the interviews, the research assistants asked open-ended questions and did not interrupt the narratives provided by the participants. All interviews were audio-recorded with consent and, if necessary, translated by one of the investigators and the research assistants.
The results of the survey were entered into an electronic database (REDCAP, Vanderbilt University) and exported to a statistical software (SPSS 20.0) for analysis. Data were summarised as percentages for categorical data and mean (with standard deviation) or median (with interquartile range) for numerical data. Univariate group comparisons were carried out using the chi-square test interpreted at a 5 % level of significance. The interviews were transcribed and coded by one of the investigators to identify the most important themes relevant for the study. The primary aim of the study was to evaluate the impact of socioeconomic factors (e.g., level of education, income, role in healthcare system, living conditions) on experiences during the COVID-19 pandemic, social pressures and potential stigma faced by participants. The objective of the interviews was to provide detailed contextual information to better understand the experiences of hospital employees, the living conditions, and the social responses at the workplace and in the local community.

Results
We conducted 376 surveys between October and December 2020. All study participants had tested positive for SARS-CoV-2 between 11th April 2020 and 30th November 2020. During the same period, a total of 626 hospital staff received a positive test result, which means that our study captured over 50 % of all staff infected during this period. The age of the participants ranged between 20 and 60 years (mean age 37 years). We included 163 female (43 %) and 213 male (57 %) participants. Table 1 lists the work designations of the participants. Table 2 shows the number of hospital employees from each designation who (a) got infected during the study period, (b) participated in the survey and (c) participated in the interviews.
Of the participants, 227 (60 %) were permanent employees of the hospital and had health insurance, whereas 149 (40 %) were contract workers or on temporary posts and may not have had access to insurance. However, the hospital provided free medical care during the time of illness. Almost all participants (372, 99 %) had at least a secondary school education, with 119 (32 %) having a professional degree. 116 (31 %) participants reported face-to-face interaction with patients as part of their job, whereas 260 (69 %) did not.
We examined potential risk factors for acquiring COVID-19. One hundred and thirty-four participants (36 %) reported that a family member from the same household was working outside the house during the lockdown. Of these, 93 (25 %), 23 (6 %) and 18 (5 %) respectively reported that one, two, or three or more household members were working outside during the lockdown. 77 participants (21 %) reported that a family member worked at the same hospital. Two hundred and thirty-nine participants (64 %) were able to maintain physical distance during travel and work; the others were either unsure or clearly not able to do so due to their living and travel conditions during the lockdown.
Only 114 participants (30 %) were isolated at home, the rest were isolated at a designated COVID-19 ward in the hospital or at an isolation centre elsewhere. The reasons for not being isolated at home included lack of home isolation facilities, fear of infecting others, and being symptomatic or having comorbidities which would require additional care. Participants living in slums, chawls and slum redevelopment buildings were less likely to have home isolation compared to those living in private apartments or office quarters. (27/147, 18 % versus 87/ 229, 38 %). Participants who tested positive in the later phase of the pandemic (July to November 2020) were more likely to have home isolation as compared to those in the earlier phase of the pandemic (April to June 2020) (25/170, 15 % versus 89/206, 43 %). Regarding the likely source of infection, 72 (19 %) participants felt it was acquired during travel, 248 (66 %) in the hospital and 22 (6 %) through interaction with colleagues.
One hundred and twenty six (34 %) participants reported negative social experiences before, during or after their COVID-19 diagnosis. Participants who tested positive in the early phase of the pandemic (April to June 2020) were more likely to face negative social reactions, compared to those who tested positive later (July to November 2020) (68/170, 40 % versus 58/206, 28 %). Experiences with negative social responses were higher among staff working in non-patient-care areas (42 %), nurses (35 %) and support staff (30 %) and lowest among  doctors (14 %) thus reflecting a socio-economic hierarchy (Table 3). Participants with higher levels of education were less likely to encounter negative social reactions (70/227, 31 % among graduates and above versus 56/149, 38 % among those with lower education levels). Participants living in slums, chawls and slum redevelopment buildings were more likely to experience negative social reactions (62/147,42 %) compared to those who lived in hospital quarters or private apartments (64/229, 28 %). The rate of negative social responses was similar irrespective of whether participants had face-to-face interaction with patients or not. (86/260, 33 % in those with face-to-face interaction versus 40/116, 34 % in those without). Age, sex and household income levels did not have any impact on the incidence of negative social experiences. Among the 60 participants who were interviewed, 34 (57 %) reported some form of negative social experience during their COVID-19 illness. Empirical data from the interviews showed that hospital staff faced three distinct forms of negative social experiences during the pandemic:

Neighbourhood tensions around restrictions of mobility
Problems with neighbours occurred mainly around questions of who could and who could not move for work. The strict lockdown policy in India allowed only "essential workers" to leave their homes for work while everyone else had to remain at home for several months during the lockdown. For many, this meant a complete loss of income. It also made it difficult for people to escape the crowded housing conditions characteristic of everyday life in slums and working-class tenements. The unequal access to mobility, and thus income, created tensions for people who were allowed to move because they happened to be hospital employees.

Experiences of social distancing
Once hospital staff received a positive test report, neighbours in the local community and colleagues in the hospital kept a distance. This often led to feelings of being avoided, shunned and abandoned in critical times. Relationships with colleagues in the hospital changed even after complete recovery.

Harassment
In India, a positive test result often resulted in the sealing of the entire building where positive cases were found. As part of its response to the spread of the virus, government authorities assumed extraordinary powers and implemented strict containment measures. Independent of the size of the house and the number of inhabitants, buildings with a positive case were sealed for a minimum of two weeks, with no person allowed to enter or exit, except officials and medical professionals. Sealed buildings were marked off symbolically and became visible in neighbourhoods because authorities put up barricades and large warning banners at the entrance, sometimes with police officers posted outside on the road. Buildings were locked without prior notice, making it difficult for residents to procure groceries and prepare for an uncertain period of enforced quarantine. The policy of sealing entire buildings triggered anger and frustration especially in low-income neighbourhoods, sometimes resulting in harassment of hospital staff who tested positive and who were made responsible for the government intervention that affected the entire community. Due to their occupation, whether medical or not, hospital staff were blamed for the containment measures and the radical restrictions.

Discussion
The results of our study reveal a strong relationship between social conditions and the risk of acquiring COVID-19. Most hospital staff who tested positive were living in households with 3-6 people and in crowded housing conditions. More than half of them reported a household income of less than Indian Rupees 75,000 (approximately 750 British pounds) per month. This meant that relatively large families were living in small flats with no possibility for physical distancing. These results are similar to those of another study which reported that a large household (more than 4 people) was a risk factor for hospitalisation after COVID-19 infection [5].
A substantial proportion of participants in the study had negative social experiences during their COVID diagnosis, and the extent of this was inversely related to their socio-economic status. Other studies from India looking at stigmatisation of healthcare workers (even if not infected with COVID-19) during the pandemic have also identified risk factors for such experiences [6][7][8]. Yadav found that marital status, designation and place of stay were significantly associated with risk of stigmatization [6]. Jain looked at 120 frontline healthcare workers and found that more than half of them had negative social experiences [7]. Severity of stigmatisation was associated with age, male gender, designation, education, and marital status of the healthcare worker. Radhakrishnan surveyed 600 healthcare workers (predominantly nurses) and reported many stigmatising experiences, though self-esteem was preserved [8]. Being a nurse and working in a clinical area were more likely to be risk factors to have stigmatising experiences. A systematic review looking at studies across countries found that healthcare workers and their families suffered stigmatisation associated with work-related COVID-19 exposure, and this resulted in negative psychological effects [4]. However, these studies do not differentiate between different types of healthcare workers and are thus unable to provide us with a more detailed sociological understanding about the actual processes that create tensions between people. These studies are mainly measuring "stigma", but they are not exploring when, how and why it happens. As our results show, not every healthcare worker is equally likely to experience negative social reactions and these reactions are in themselves quite diverse. Our results also demonstrated a waning in negative experiences over the course of the pandemic, which is possibly a result of increased understanding of the dynamics of the pandemic by people in the community and easing of restrictions by the government.
In terms of negative social responses, participants reported three different types of experiences, which are not well-captured by the stigma concept. First, the negative experiences around restrictions of mobility are best understood not in the individualising language of stigma but in a more collective register as neighbourhood tension. At the heart of this tension is the fundamental ambivalence of mobility, as both desirable and dangerous. Facilitating this ambivalence are the state's material restriction of the right to mobility on the one hand and the symbolic association of mobility with disease transmission on the other hand. Second, the isolation during the period of infection and physical distancing even after are best understood as feelings of disappointment, framed as moral failure of the other (the neighbour/the colleague/the relative/the friend). Physical distancing turned into social distancing, signalling a break with normative expectations that are embedded in social relationships. This type of negative social experience is independent of work in the hospital and has little to do with "stigmatisation" of Table 3 Occupational designation and negative social responses. healthcare workers. It is important to keep in mind that distancing was a key government policy and that the boundaries between physical and social distancing are blurred. Subject to multiple practices of distancing due to a positive test report, hospital staff placed the experience of distancing in a moral register and saw it not as compliance with government rules but as lack of empathy and failure to support. Finally, harassment occurred mainly in response to the sealing of buildings by government authorities, triggered by a hospital employee's positive test report.
Our study shows that those employees on the lower end of the hierarchy of occupations in the hospital, with lower socio-economic status, lower education and with residence in slums, slum redevelopment buildings and working-class tenements (chawls) were more likely to report negative social reactions. Significantly, negative social reactions such as blame, accusation, retribution, tension, verbal abuse, social distancing, segregation, exclusion, and harassment occurred mostly in people's residences and occasionally in the hospital. We suggest that neighbourhood tensions, social distancing and harassment are distinct scenes of social negativity that are not well-captured by the generalised use of the stigma concept that often assumes that people stigmatise others either because of fear of disease or lack of knowledge. What needs to be examined is not fear or ignorance, but how restrictions of mobility increase the pressure on social relationships in local worlds marked by dense cohabitation and precarious living.
It is important to note that our study is based not only on HCWs in the narrow sense of the term (doctors, nurses, laboratory technicians and administrative staff). We systematically included all hospital employees, both medical and non-medical (fire fighters, drivers, security personnel, janitors, ward boys, doctors, nurses, laboratory technicians, researchers, administrators, plumbers, electricians, and gardeners.) The study is unique because it captures the entire range of occupations, social backgrounds and living conditions of hospital employees beyond common definitions of the healthcare workforce as a homogenous group of people. As we argue in this article, there are significant differences in social backgrounds and experiences among HCWs that need to be considered in scholarly debates and public health policies that are concerned with the health and well-being of hospital employees during public health emergencies. Unlike most studies, which used surveys, this investigation is based on mixed methods, using both surveys and semistructured interviews to generate reliable and robust empirical data which allowed us to examine how social conditions impact experiences with negative social reactions (commonly termed "stigma" in the literature) [9][10][11]. To better understand negative social responses, the study did not rely on standardised scales or tools to measure stigmatisation. Instead, we used an inductive approach that starts with the experiences of people and then builds a typology based on the empirical evidence rather than applying a predetermined scale to frame people's experiences. The advantage of our qualitative methodology is that we can not only count negative social experiences, but we can also situate them in the contexts where those experiences happened. This provides insights into the how, when, where and why social tensions emerge. This is in contrast to other studies which have attempted to use stigmatisation scales to measure the extent of stigmatisation, even though these scales may not have been validated in the context of COVID-19 [7,8]. Other recent publications have described stigmatisation scales specific to COVID-19 [12][13][14]; however, these were not available when our study was conceptualised, and have not been validated in larger populations. Also, in contrast to many other studies which focused on doctors or nurses [6][7][8], our study is representative of the entire spectrum of hospital workers, and highlights the fact that those working in non-patient care areas and who had no direct interaction with patients also bore the brunt of negative social experiences by virtue of their association with a hospital, which fundamentally shapes their identity and their standing in the local community.
The limitation of this study is that our data relates to participants who developed COVID-19 in the first phase of the pandemic. Within our study, negative social experiences were less in the second part of the study period compared to the first; it is likely that over the last two years, people have adapted to the pandemic with further reductions in the extent of stigmatisation. As we argue, the term 'stigma' is overused and overgeneralized as a concept in contemporary health research, making it difficult to differentiate between different types of social negativity. There is a tendency in the literature to call "stigma" almost any kind of negative social response to people associated with disease. This has resulted in an overuse of the concept of stigma across a variety of social phenomena that makes it increasingly difficult to differentiate between various forms and types of social negativity. The generalisation of stigma also erases socio-structural inequalities, which in turn feeds into negative social responses and vulnerable social conditions. We suggest a cautious reliance on the concept and emphasise the necessity of not only counting stigma experiences and feelings but also investigating the conditions and circumstances under which they occur.
Whilst pandemic preparedness has mainly focused on the protection of healthcare workers inside the hospital, this study highlights an oftenoverlooked dimension: the world outside of the hospital to which employees return every day. Even as countries across the world face fresh surges of COVID-19, we suggest that pandemic preparedness should take a holistic approach and consider how it can contribute to the health and wellbeing of hospital staff not just in the institutions where they work but also in the neighborhoods where they live.

Previous presentation
Nil.