Introduction
A new strain of coronavirus emerged toward the close of 2019 in Wuhan,
China, giving rise to the coronavirus disease 2019 (COVID-19) and
spreading a wave of concern across China
(1). This health issue soon became a
pandemic, placing an immense burden on populations all around the world
(2). According to data from the World
Health Organization (WHO), Iran is one of the countries that has been
highly affected by COVID-19 (3). Kalantary
H. et al. showed that in Iran, up to one-third of patient deaths
due to COVID-19 occurred in individuals aged over 70 years, while the
highest recovery rate was seen in those aged between 30-39 years
(4).
One of the key issues raised from the start of a pandemic is social
stigma (5). The notion of stigma is
defined as “a social process that results in devaluation and
discrediting” (6). According to Echoing
Goffman, stigma creates a dichotomy between the states of “being normal
and acceptable” and the state of “being tainted and undesirable’ or a
dichotomy between “normal” and “undesirable” states in general. It
is usually associated with an attribute that is deeply discrediting,
reducing an individual “from a whole and usual person” to a “tainted,
discounted one” (6,
7). In the process of stigmatization,
people involved in the phenomena of the social world are pushed to the
margins of society (8). Stigma may not
only affect the mental health (9) and
behavior of those who are stigmatized but also can change and
reconstruct their feelings and beliefs
(10, 11).
Furthermore, stigma can cause depression in the short or long term due
to the social disrespect that accompanies it
(12).
Since the commencement of the COVID-19 crisis, infected individuals
have at times been labeled, stereotyped, and discriminated against. Such
stigma can represent a critical issue, threatening both the personal and
social life of healthcare workers, patients, and survivors
(5). Ramaci T. et al. showed that
the social stigma associated with COVID-19 had a high impact on
healthcare workers’ psychological and physical demands, professional
quality of life, and self-esteem in Italy
(13). Moreover, several reports have
claimed that some people refuse to bury the corpses of COVID-19 victims
in Egypt (14). Gradually, the issue of
COVID-19 associated stigma went beyond personal and social aspects and
turned into an international stigma against races and countries. For
example, anti-Asian stigma was generated by certain groups and even
politicians considering the supposed geographical origin of the disease
(15). Stigma and discrimination lead to
social exclusion, which affects mental health
(16). Stigma does not stop at illness: it
marks those who are ill, their families across generations, institutions
that provide treatment, psychotropic drugs, and mental health workers
(17). The stigma associated with COVID-19
poses a serious threat to the lives of all those involved directly or
indirectly with the disease (5). The
effects of COVID‐19‐related stigma on the health and social lives of
individuals and societal functioning are enormous
(18). The study conducted by Banks
L. et al . showed that poverty exacerbation due to COVID-19 could
represent a key social problem among individuals who reside in low and
middle-income countries. The mentioned study revealed that people with
disabilities faced several personal, economical, and social challenges
in the COVID-19 period, with the researchers concluding that social
protection and financial support are necessary for protecting such
individuals from social stigma (19).
Moreover, the study of Gupta J et al. revealed that some
protective measures against COVID-19 had negative social effects on
low-income individuals (including those residing in poor areas) due to
inadequate access to health facilities and lack of financial support.
Moreover, the study claimed that some of these social effects may be
stronger than the negative health effects of COVID-19
(20). On the other hand, frustration and
anxiety were reported as the predominant social theme among the
population, particularly among healthcare workers on the front-lines of
COVID-19 management (21,
22).
To the best of our knowledge, few studies are available on COVID-19
associated stigma in Iran, especially ones that are qualitative in
nature. Therefore, this study was conducted to assess COVID-19
associated stigma among the Iranian population through a qualitative
survey.
Methods
Study design, participants and samplling
The present work was a qualitative study that was conducted in January
and February 2021. The study area was the Fars, Yazd, and Khorasan
provinces. Data were obtained through interviews with 24 individuals who
had fully recovered from COVID-19 after treatment. The snowball sampling
method was employed, and sampling was continued until achieving data
saturation. Table 1 shows the characteristics of the participants in the
study (Table 1).
[Table 1 here]
Data collection
The interview protocol was based on the following questions:
- Can you tell us how did you feel about getting COVID-19 and what you
did?
- Did people around you andyour relatives change their attitude towards
you after you tested positive for COVID-19?
- How did people treat you in other environments, such as the workplace
or hospital?
- Can you describe your perception and understanding of the behaviors of
those around you?
The semi-structured interviews were transcribed after being conducted
via telephone by an expert sociologist. The use of telephone interviews
in qualitative research has proved useful in recent decades
(23, 24).
The transcribed data were analyzed via conventional content analysis
(25). For this purpose, the data were
read several times by the researchers to obtain an overview of what the
participants were talking about. Then, condensed meaning units were
labeled by formulating codes that were subsequently grouped into
categories. The interviews were analyzed with the aim of bringing the
categories to the highest level of abstraction, i.e., arriving at
specific themes. The reflexive method was used during this process.
Researchers went back and forth several times between the data and the
generated themes in order to arrive at the most appropriate themes.
Research validity
Given its significance, we attempted to ensure the validity of the work
by following the model of Lincoln and Guba
(26). To this end, designing a suitable
qualitative research model, selecting the right participants, choosing
accurate interview questions, and employing appropriate methods for data
analysis were the most important concerns of our research group. We used
member check (27) during the data
analysis process as one way to see if the categories and themes reached
were satisfactory. Assessing the transferability of concepts and themes
was also one of our priorities. Ultimately, our research group aimed to
base the concepts and themes on the actual data rather than relying on
individual preconceptions and assumptions.
Study ethics
The protocol of the study was approved by the Ethics Committee of Shiraz
University of Medical Sciences (Ethics code: IR.SUMS.REC.1399.419).
Informed consent was obtained from all participants. Patients were also
assured that their personal information would remain confidential with
the researchers.
Results
Data analysis revealed that the experience of affliction with COVID-19
was quite difficult for the study participants. This was particularly
prominent in the first two waves of the disease in Iran, where the
participants were under severe psychological pressures. Fear of
transmitting the disease to other family members, fear of illness and
death, rejection by family members, and loneliness comprised the most
common experiences. The three main themes developed were fear and
rejection, discrimination, and loneliness (Table 2).
[Table 2 here]
Fear and rejection
Right from the start, affliction with COVID-19 creates a pervasive fear
among patients and more so among those around them. Such fear arises
when the test returns positive, and the patients implicitly or
explicitly start noticing dramatic changes in the behaviors of those
around them as the fear is accompanied by rejection. The most common
experience of the study participants was the behavioral changes that
they witnessed in those around them after declaring positive test for
COVID-19. These changes are shaped by a combination of fear, concern,
suspense, and compassion, though mostly being due to fearing affliction
with the disease. Usually, fear first arises in those around the person,
such as first-degree relatives or colleagues. The behavior that stems
from fear is understandable to the patient. On the one hand, the patient
gives the right to those around him, and on the other hand, witnessing
such extreme fear adds to their concerns. Rejection begins with the
initial distancing from the patient. ”Testing positive” here means fear,
concern, anxiety, rejection, and seclusion. The person understands these
meanings from the behaviors and attitudes of those around them and
attempts to manage them, where ensuring the well-being of those around
them is the most important solution. The person realizes that those
around them are reluctant to approach them and may be trying to main
their distance. In this situation, everyone is afraid of illness and
death, which are seen to be embodied by the patient. The fear is such
that even patients in the COVID-19 ward were afraid of one another.
Moreover, four participants drew similarities to stigmatized concepts
such as AIDS, leprosy, and al 11Mythological demons of
childbirth that interfere with human reproduction., meaning that the
atmosphere of fear is intense to such an extent that it is as if the
patient has contracted such negatively perceived diseases.
See, the disease was so scary that I remember, for instance, when my
test result returned positive, everyone around me became anxious even
though I didn’t have a very bad feeling (participant 6).
It seems that you have AIDS or leprosy because a very discomforting
feeling touches you and everyone tries to distance themselves from you
(participant 5).
The most important psychosocial issue concerning COVID-19 is that this
fear and rejection may continue even after disease resolution. A miner
still spoke of feeling fear and rejection. He believed that 14 months
after the start of the COVID-19 pandemic, laborers in cities such as
Mashhad, Tehran, and Tabriz who go on leave to their towns and villages
still are avoided by others upon returning.
You know, we’re still scared. We are afraid of those who return after
going on leave. We assume that they were gone due to testing positive,
or that they are returning from another area with the virus (participant
1).
The atmosphere of fear and rejection made some prefer to hide the
disease, especially in the first and second waves. The stigmatization of
COVID-19 sufferers and victims represented the main reason for such
concealment. One of the participants, a 34-year-old single man,
described telling a friend to keep it secret after he tested positive.
When I tested positive, I didn’t tell anyone. No one in the neighborhood
was aware of my disease. I didn’t even tell my family members, except
for my cousin, whom I told so that if my situation worsened, he would be
prepared to take me to the hospital (participant 4).
Discrimination
Another key experience among the participants was discrimination, which
they saw either in themselves or in their relatives. Fear and exclusion
lead to the construction of an atmosphere of discrimination. Several
participants described their experiences with occupational
discrimination. At the beginning of the pandemic, when intense fear
prevailed throughout society, occupational discrimination became
prominent. In the workplace, anyone who coughed or sneezed was labeled
as infected or suspicious, leading to their rejection by others.
Notably, people who became infected continued to experience a sense of
discrimination even after returning to work. The discrimination seems to
be involuntary; it may be a social compulsion influenced by the
atmosphere of fear, where the pandemic appears to have led to such
discrimination against COVID-19 patients.
My father was hospitalized and died in a COVID-19 ward for unknown
reasons. You can’t imagine the calamity that we went through. There was
no one to participate in the funeral, and I was deprived of seeing my
father for a final farewell, which is something that will forever hurt
me (participant 22).
I went to a company for a job interview. The employer asked me to pull
my mask down. I said that I am suspicious [for COVID-19]. He asked
what I was doing there, and told me to leave immediately and to come
back later. In my current workplace, my co-workers told the employer to
prevent me from coming to work (participant 17).
Another form of discrimination was familial discrimination, where the
atmosphere of fear and rejection would prevent family members from
paying appropriate attention to a person with or suspected of COVID-19.
The family is not interested in communicating with or caring for the
individual, treating him or her in such a way that they come to the
conclusion that they must minimize their expectations from the family.
I saw my family behaving in such a way as if I no longer had a
place in the house … they would treat me differently than other
family members. That’s why I moved out; I found living apart to be
better. I’ve lived apart from them ever since (participant 8).
Social discrimination also occurs in social interactions between healthy
individuals and suspects or sufferers, their families, and families who
have lost members due to COVID-19. In these situations, minimal contact
is made with these individuals, and even condolences are sparingly
given. These people are also kept away from social spaces when others
know them. Perhaps the reason for all this social discrimination is that
people are afraid that as soon as they enter into a conversation with
these people, they may be infected or will be forced to visit the
affected person or family.
In our neighborhood, I remember that no one would even reply to the
greeting of the first person who became infected; people would pass by
him swiftly as if he had all sorts of faults. An old man fell victim to
COVID-19. When he died, even the way that people offered their
condolences to the family differed from the usual (participant 4).
Someone had willed for their body to be taken to the family village
after their death. However, the villagers blocked the ambulance from
entering the village. Ultimately, the person was buried in a desert
nearby the village (participant 23).
Loneliness
One of the prominent themes among those with the experience of
affliction with COVID-19 was the intense feeling of loneliness. The
first issue associated with loneliness is the loss of social and
psychological support from loved ones, which was experienced by over
one-third of the participants. In fact, families were in a state of fear
and rejection. In these situations, family members usually inadvertently
change their behavior toward the sufferers. Furthermore, some
participants described that the family members would specifically expose
the sufferer to severe social pressure in demanding that they follow the
protocols during isolation. Many participants who stayed home in
self-quarantine and sent their family members elsewhere experienced
extreme loneliness. The absence of the closest loved ones such as the
spouse, children, or parents on the one hand and the fear and concern of
illness and death on the other created an overwhelming situation. In a
house with multiple family members, the patient was typically imprisoned
within a room and given food and medicine. Our participants described
that the infected or suspected person was constantly warned by those
around them. While some had sent their family members to live apart from
them, others were made to feel abandoned as their family members
themselves had made such a move. It seems that the most difficult
experiences were described by those who had to suddenly live alone.
As soon as I got sick, my parents left me alone and went to the village.
I became very sad. My sister would visit every day and put the food
behind the door; she wouldn’t even stop a moment to talk to me
(participant 11).
My older sister kept calling and saying that if mom and dad got sick, it
would be my fault (participant 17).
Another category of loneliness is a sort of biological-physical
experience related to the first theme, i.e., fear and rejection. In this
situation, the sufferer is dominated by the components of fear, worry,
uncertainty, feeling dirty, and feeling like they have a terrible
illness, giving rise to an unpleasant feeling of disgust toward the
individual’s own body. Any physical symptom reinforces this feeling of
self-disgust, also strengthening the fear of getting worse and dying.
Due to the way my colleagues would treat me, I would be left feeling
dirty. It was a very, very bad feeling (participant 17).
It was as if I had leprosy; it was a very unique situation (participant
5).
When you test positive, it’s like you have al… it’s not a good
feeling (participant 1).
The final category of the loneliness theme reflects the most important
phenomenon that patients experience in the COVID-19 era, which is being
distant from friends, family, and society. In addition to the
difficulties embedded in the disease process, the absence of
first-degree relatives from around the patient creates a psychologically
challenging condition. Constantly thinking about loneliness, continuous
worrying, fear of disease progression and death, and the absence of a
first-degree relative cause a kind of loneliness that is extremely
troubling for the individual. The sufferer feels a deep sense of
loneliness – as if it’s the end of the world and there is no one left
to come to their aid.
I realized something during this period: it is because of this
loneliness that people get sicker and lose their spirit, or even pass
away. Living alone is not part of human nature, and this phenomenon
itself can hurt people a lot (participant 21).
Psychologically, I felt completely torn apart for a while. Everyone
avoided me and whoever had contracted the disease after seeing me even a
long time beforehand would blame me. They would even call me up to
condemn me (participant 20).