Recruitment

The study was part of a larger COVID-19 household transmission protocol that explored the extent of household transmission [37]. Individuals who were recruited for the transmission study, which included a series of household visits to test for the virus and antibodies, could also participate in the qualitative interview study during the final household visit.

Recruitment took place through the Finnish Institute for Health and Welfare website or via an SMS message that was sent to PCR confirmed cases in the capital area. The study coordinator contacted those interested in joining the study by phone to assess eligibility and to schedule a series of home visits. A qualitative interview was conducted 28+ days after the household index’s PCR confirmation when they were expected to have recovered from the virus. To protect the interviewer from potential transmission of the virus, a phone call was made to each household before the visit to ensure household members were free of symptoms. All but one interview was conducted in Finnish.

Sampling

The sampling was based on maximum variation in which the overarching principle was to engage respondents from different types of households including couples without children, families with children, and families with teens so that their aggregate answers could be considered to reflect those of close to the whole population [38]. Interviews were conducted until no new information was generated and accordingly data saturation was reached [39].

Conceptual framework and tools

The conceptual framework of health stigma informed the development of the stigma question guide. It included drivers and facilitators, manifestations, outcomes, and impacts of stigma. The drivers and facilitators are factors that encourage stigma. Drivers are conceptualized as inherently negative. Conversely, facilitators may be positive or negative influences. Drivers and facilitators determine whether stigma “marking” occurs, meaning stigma is applied to people or groups. Once a stigma is applied, it manifests in a range of stigma experiences and practices [25]. Stigma manifestations influence a number of outcomes for affected populations as well as for organizations and institutions, which then together influence longer term impacts of stigma. The study explored “self-stigma,” which is defined as a stigmatized group member’s own adoption of negative societal beliefs and feelings associated with their health status [25]. In this study, self-stigma explored negative feeling towards self among confirmed coronavirus individuals and their household members. The study also explored perceived stigma, which are the perceptions of a stigmatized group regarding how people treat them. In this study, perceived stigma explored how laboratory confirmed coronavirus cases and their household members perceived treatment by others. This framework was selected as it is not only theoretical, but facilitates an understanding of the factors that facilitate and mediate the stigmatization process for individuals and also informs intervention development [25]. Participants were asked to describe any negative experiences with people during their quarantine or isolation to record their experiences of stigma. The question guides also included a set of open-ended questions that explored their experiences in quarantine or isolation, such as: Tell me about your time in quarantine? How did quarantine influence your life? What was difficult for you during quarantine?.

Interviews

Interviews ranged from 20 to 60 minutes and were conducted in a private room or space in the homes of the respondents. Interviews were conducted individually to allow for the exchange of sensitive or confidential information. All interviews were conducted in Finnish except one that was conducted in English. They were audio recorded and transcribed. Approximately 5% of completed interview transcripts (n = 3) were cross checked by another transcriber to ensure accuracy and the level of detail.

Analysis

The analysis was based on a thematic analysis conducted by the first author (AL) [40]. The analysis of stigma followed the health stigma framework [25] that included identifying codes and categories within each construct of the framework (drivers, facilitators, manifestations, outcomes, and impacts of stigma). Analysis of the quarantine experiences were based on an inductive coding process.

The process started with a data familiarization process during which the analyst read the transcripts multiple times to get an overall idea of the dataset and to create an initial set of codes that resulted in a codebook. Coding was conducted for each interview using the codebooks, emerging new codes were also included using NVIVO12, followed by refining and expanding codes and developing categories. The initial analysis was shared with the study team (HN, TD, and LH) to get consensus on the emerging categories and the ways to explore relationships and patterns across the interviews. In the final stage, the analyst developed the interpretation. The syntheses of the results served as the foundation for operational recommendations to support people in quarantine and isolation.

Ethics

The Finnish Communicable Diseases Law and the law on the duties of the Finnish Institute for Health and Welfare allowed the implementation of this research without seeking further institutional ethical review. Written informed consent was obtained from all cases and contacts willing to participate in the investigation, before each interview. A written consent for children under the legal age of consent (15 years) was obtained from a parent or legal guardian as well as from children under the age of 15.

Participant characteristics

The study included 64 participants from 24 households in the capital area of Helsinki in Finland. Each household included at least one PCR-confirmed SARS-CoV-2 positive individual and 1–4 family members. Almost half of the households (42%) had children (0–12 years old), one-quarter of the families (25%) had teenagers (13–17 years old), one household was a single parent household, and the remaining households (29%) were couples without children or households where children no longer lived with their parents. The sample included 14 teenagers or children and four households included healthcare workers (nurses or doctors).

Most adult participants were in the age range of 30–49 (75%). The sample included approximately an equal number of female and male respondents. The PCR confirmed cases occurred in households during February-April 2020. The majority were confirmed in week 11 (50%) and week 12 (34%), while the remaining cases were confirmed in week 9, week 10 and week 13. Among PCR confirmed cases there was one teenager and three children who were confirmed positive. Household members who did not have symptoms were not PCR tested.

Perceived stigma

This section describes drivers, manifestations, outcomes and impact of perceived stigma. See Fig 1 Framework for perceived stigma. Most adult respondents had experienced stigma, while stigmatizing experiences among children and teenagers were less common. All stigma experiences of teen and child respondents included parent involvement, such as informing their friends or their families about their coronavirus status on behalf of the child or teenager. Respondents explained that most experiences of stigma occurred after quarantine because during quarantine their social contacts were minimal and accordingly there were few opportunities for stigmatizing experiences. Perceived stigma did not differ between respondents who experienced the infection during different periods of time nor between people who had wide social support networks or narrow social networks with whom to communicate. Stigmatizing experiences did not vary between respondents from different types of families or between those who were COVID-19 PCR confirmed cases, those who tested negative and those did not know of their coronavirus status, or between those with severe symptoms and those with mild symptoms, or among different types of families.

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Fig 1. Framework for perceived stigma.

https://doi.org/10.1371/journal.pone.0247962.g001

Those who did not report perceived stigma explained they had not thought of coronavirus as something stigmatizing. They included households with teens and children and in many of these households the infected individuals had experienced only mild symptoms.

Drivers of perceived stigma

Respondents believed that they were stigmatized because of fear of getting infected with SARS-CoV-2 or because they were blamed for contracting the virus. Some respondents also believed that people were angry with them for putting others, especially children, at risk of infection.

A number of respondents highlighted that fear of contracting the virus was prominent because people were unsure how long individuals stayed infectious and whether the infection was followed by immunity and if so, for how long.

Healthcare workers experienced particular blame for contracting the virus.

“People think that we should not have any other life but being nurses or doctors. We should not be allowed to go out and contract the virus.” (Female healthcare worker respondent from a family with teenagers)

Perpetrators and manifestations of perceived stigma

Respondents identified four types of stigma perpetrators linked with different types of social networks. The most distant social network of stigma perpetrators included those who had no personal relationship with the respondents but who communicated by posting comments on social media and traditional media sites. Stigma manifested in blame for being irresponsible and careless.

“After talking to media I got so many negative comments. I could not believe the reactions of people. They blamed us for being reckless. It felt really bad. I decided not to speak up again.” (Female respondent from a family with children)

The second network of stigma perpetrators were those who had an indirect link to the social networks of the respondents such as being parents at the same school as the respondents’ children or living in the same neighborhood, but not having a personal relationship with respondents. They stigmatized respondents by blaming them for contracting the virus, gossiping, and by being overly interested in their coronavirus and COVID-19 experiences.

“Yes we heard through friends that some people were accusing us of not informing everyone in the neighborhood about our infection. I am very sensitive about this kind of gossiping.” (Female respondent from a family with children)

The third network of stigma perpetrators included friends, acquaintances and colleagues with whom participants had not been in close contact before contracting the virus. Stigma manifested in the reluctance to interact with the respondents.

“There are many friends who are very straight forward that they won’t meet with us even outdoors.” (Male respondent from a family with children)

The fourth networks of stigma perpetrators were those who had been in close contact with the respondents before or during quarantine or isolation. Stigma manifested in being overly curious and continuously questioning them about coronavirus, the modes of transmission, and the ease of the transmission.

“It was quite obvious that they (friends) were afraid of my infection. It was tiring to answer the same questions over and over again. They also wanted us to give them instructions how to protect others from the infection and they did not believe that we had not received any such instructions.” (Male respondent from family with no children)

Outcomes of perceived stigma

Stigmatizing experiences resulted in respondents’ reluctance to disclose their coronavirus status. Respondents frequently explained that disclosing their status to those that they had exposed was seen as a duty, but they disclosed to others only on a “need to know basis”. Some respondents explained they did not hide their coronavirus status from others, but only talked about it if asked.

“I still carefully consider every time I am in a situation in which I should tell about my COVID-19 status.” (Female respondent from a family with teenagers)

Outcomes of stigma among teenagers and children included insecurity about how to deal with friends and worry about the reaction of colleagues and friends at school.

“I am bit nervous about going to school. I know that people know we had coronavirus at home.” (Teenage respondent)

Impact of perceived stigma

Respondents highlighted that perceived stigma negatively impacted their social contacts in many ways and accordingly reduced their quality of life.

“My life is not the same. There was more going on and more people around. It feels empty now.” (A female respondent from a family with children)

Self-stigma

This section describes drivers, manifestations, outcomes and impacts of self- stigma. See Fig 2 Framework for self-stigma. Participants were asked to explain the kind of negative feelings they had towards self to better understand how they defined self-stigma. Participants explained that self-stigma meant feelings of being contagious or infectious and accordingly worry about infecting others, which was particularly common after the quarantine or isolation ended.

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Fig 2. Framework for self-stigma.

https://doi.org/10.1371/journal.pone.0247962.g002

Almost all adults had negative feelings towards self, whereas none of the children, youth or healthcare workers or their family members expressed self-stigma. Self-stigma did not differ between respondents experiencing the coronavirus during different periods of time nor between people who had wide social support networks and those who only had a few people with whom to communicate. Self-stigma did not vary between respondents from different types of families, between or between those who were COVID-19 PCR confirmed cases, those who tested negative and those did not know of their coronavirus status, or between those with severe symptoms and those with mild symptoms.

Drivers of self-stigma

Respondents highlighted that negative feeling towards self were driven by limited and changing information about the virus as well as limited and often contradicting information about quarantine procedures. Respondents also highlighted that information about quarantine did not include many concrete or practical instructions, which led to uncertainty about how to manage daily life during quarantine or isolation and how not to infect others. Some respondents worried that the health authorities had ended their quarantine time only because there were not enough workers to follow up with all positive coronavirus cases. Similarly, some COVID-19 PCR positive cases worried about being potentially infectious as their quarantine ended while they were still symptomatic. In addition, respondents expressed insecurity surrounding immunity as yet another reason that kept them worried about potentially still being infectious.

“I had hoped that once I was done with quarantine that my life would return to normal but it did not. I continued to be worried about transmitting the infection to others.” (Female respondent from a family without children)

Some respondents who did not know about their coronavirus status often struggled for several weeks to get PCR-tested for SARS-CoV-2 during which continuous uncertainty played a central role in their lives. The same uncertainty continued after quarantine.

“I do not know what I should think about myself. Did I have the infection [COVID-19] or not?” (Male respondent from a family with teenagers)

Manifestations of self-stigma

Adult respondents explained that self-stigma created stress when leaving the house and when in close proximity to others in shops, markets and even outdoor areas such as in parks. Meeting friends in the street and greeting people made some respondents tense; some worried about being blamed by others for being outside of their home. COVID-19 PCR respondents expressed greater stress about encounters with people outside of the house than others.

“I was thinking that neighbors are watching and wondering why I’m going to do the shopping.” (Female respondents from a family with children)

Healthcare workers and their family members did not express fears about being infectious after quarantine. On the contrary, they were confident about having immunity that protects them and others.

“It may come back [COVID-19] but I would be really surprised if no antibodies were detected in me.” (Female respondent from a family with a healthcare worker)

Children and teenage respondents did not explain situations in which they felt difficulty interacting with people outside their house. On the contrary, some of them claimed having breached quarantine to meet friends.

“My sister told me not to go out but it was so frustrating to stay at home. I really missed my friends. So I met my girlfriend outside of the house a couple of times.” (Male teenage respondent)

Outcomes of self-stigma

Adult respondents explained that self-stigma made them reluctant to meet people outside of their household, and in particular, with people who belonged to high-risk groups. Many of them expressed being devastated about not being able to meet elderly or sick parents in person and not knowing when they would able to do so.

“I know I am no longer sick but I haven’t been able to meet with my parents. I really do not dare to do that. This is a real tragedy for us, but I am too worried about infecting them.” (Male respondent from a family with children)

Adult respondents also prolonged their quarantine after the official quarantine time had ended by an additional one to even three weeks because of fear of infecting others

“We just wanted to be on the safe side and continue our quarantine for an additional two weeks.” (Female respondent from a couple without children)

Two adult respondents expressed guilt about having infected people outside of their household who belonged to high-risk groups. Respondents did not express guilt about infecting members of their own household, which they saw as inevitable.

“I felt so guilty for having infected my mother. I visited her every day. My isolation was all about worrying about my mother.” (Female respondent from a family with children)

Impact of self-stigma

In general, respondents agreed that self-stigma was a burden that created psychological stress.

“These negative feelings that I have towards myself are creating so much tension and stress in my life.” (Male respondent from a couple without children)

Coping mechanisms to manage stigma

Respondents explained they managed stigma in multiple ways. Some of them felt that the best way to avoid stigma was to challenge the fear of being stigmatized by telling everyone with whom they had been in contact about their coronavirus status. However, not all respondents could overcome the fear of stigma to do so.

“We told everyone so nobody will come later to blame us.” (Male respondent from a family with children)

Others explained that they avoided stigma by following the instructions for isolation or quarantine and ensured that everyone who knew about their coronavirus infection knew that they were doing the right thing to prevent the transmission of the virus.

“We were always at home as they requested us to do. This was also a way to avoid conflicts and reduce the fear people had towards us.” (Female respondent from a family without children)

Some respondents reduced self-stigma by convincing themselves that they had done everything they could have to avoid contracting coronavirus. Others believed that increasing quarantine time by an additional week or two reduced self-stigma.

“We took decisions based on the available information. There was nothing more we could have done at that time to avoid the infection.” (Female respondent from a family with children)

Quarantine and isolation experiences

This section describes key characteristics linked with quarantine experiences (worry about health and boredom) as well as communication and everyday routines during quarantine and isolation.

Worries about health

Respondents from households with severe or prolonged coronavirus-related symptoms or from households where household members had difficulty accessing testing or being admitted to the hospital often described their quarantine experience as having revolved around symptom management and worry about escalating symptoms and even death. For some respondents this was an overwhelming experience. Respondents explained thinking about death in particular when a friend or someone they knew was hospitalized or when media reported about high infection rates and fatalities abroad. Respondents explained that they passed the time by analyzing their changing symptoms.

“I was living in continuous worry and fear. No one was able to explain how the illness will develop.” (Female respondent from a family with children)

Some respondents found themselves caring for their sick household members, which consumed all of their time and energy. Many of them felt incapable of the task and therefore considered it a heavy responsibility. Some respondents felt sorry for their children who were ignored and forgotten while they managed the illness among other household members.

“My life was revolving around my sick husband. I could not rest or think; I just kept going from one day to the next. I wanted him to be admitted to hospital as I did not want to carry all that responsibility myself.” (Female respondent from a family with children)

Children and teen respondents explained being worried when seeing one or both parents severely ill. Some of them worried about the condition of their parents and what they could do to help the situation, others were more worried about practical issues such as what to do if both parents ended up in the hospital. Neither children nor teenagers seemed worried about their own health.

“I was scared when both of my parents were sick. I went through an emotional rollercoaster when my parents were ill.” (A male teenager respondent)

Some respondents were consumed with worry about the people they exposed to the coronavirus or who contracted the virus from them.

“I had no time to think about myself or worry; I was so devastated about my mother. I felt so guilty for infecting her.” (Female respondent from a family with children)

Others worried about friends and family members in high-risk groups who may get sick or about not being able to socialize with them.

“We haven’t met with my parents since this all started. I am so worried and we are all so sad. I kept thinking of my parents a lot.” (Female respondent from a family with no children)

Boredom

Some respondents from households with mild COVID-19 symptoms described quarantine as monotonous with the same daily routines. Some were irritated about their everyday lives. Teen and child respondents also frequently described quarantine as tiresome and dull. One of them explained that quarantine made him and his friends extremely passive. Respondents who used to meet with friends and had an outgoing and active lifestyle were particularly bothered about the restricted lifestyle in quarantine.

“It is exhausting to be at home, all days are the same. Although I manage to work from home just fine, the days are the same.” (Male respondent from a family without children)

Others with mild symptoms did not consider that their everyday life had changed much since they contracted the virus. They explained spending a lot of time at home, working from home, or having little social contact outside of their home.

“Our life is already like quarantine so this situation has brought us no major changes for us.” (Male respondents from a family with teenage children)

Communication

Over half of the participants had at least one person in the household who was communicating regularly with others who had contracted the virus. The most common communication channel was a WhatsApp group that was established among people who attended an event during which they contracted the virus or a pre-existing WhatsApp group where friends who had contracted coronavirus were already communicating.

“I don’t know what I would have done without my group. I was talking to them daily. It helped me to ensure that I was going to manage this.” (Female respondent from a couple without children)

Those who did not belong to such peer support groups included participants who did not know the mode of transmission of their infection or those who were elderly.

Respondents explained that regular communication with others, including listening to the illness episodes of others and finding similarities with their own experiences, reduced worry about their own health and the health of other coronavirus positive household members. Communication with peers also provided an opportunity to share their own experience with those who understood their situation. Respondents said that being part of a group empowered them: “Together we can make it.” In addition, respondents mentioned that groups provided information about how to access testing and they helped them prepare for being positive for SARS-CoV-2. Communicating with others in the same situation was also important to healthcare workers.

For some respondents participation in coronavirus-specific communication groups was a negative experience as continuous discussions about the topic made the illness highly present in their lives and a source of stress. One respondent felt that the active WhatsApp communication by his partner made him an outsider. For other respondents, active WhatsApp communication with other household members was a great source of information for the whole household.

“It was a bit too much for after a while with all the information I received from the group. I felt that there was nothing else in my life than corona so I started distance myself from the group.” (Female respondent from a family with children

Some respondents discussed their infection in other personal WhatsApp groups to share coronavirus and COVID-19 information with others or to get attention. Some respondents explained that they had the role of “corona experts” in those groups whose advice friends sought through the group.

“My friends who are worried about corona keep consulting me about their symptoms. I turned out to be corona expert.” (Male respondent from a family with children)

Teen and child respondents did not explain having established any coronavirus-specific groups. Some of them communicated with friends from time to time about their infection, but more often their discussions related to quarantine and the problems that it brought to their lives such as cancelled graduation parties, sports and travel.

“We used to talk about corona in the beginning with friends but not so much anymore. Now we wonder when all this will end and we get back to our lives and our activities.” (A male teenage respondent)

Many respondents highlighted that they were cautious talking about worries and fears related to coronavirus with their own family members to avoid elevating problems. Some respondents clarified that talking about the infection might increase their fears or generate more serious situations.

“I did not want to open up discussion about my fears with my family. They were worried enough. I thought it may upset them more.” (Female respondent from a family with teenagers)

Respondents explained that media coverage was exhausting and stressful and some of them had stopped actively following it. Other participants claimed following all news related to coronavirus on a daily basis. Several adolescent respondents felt that the media coverage irritated them and accordingly they no longer followed the coronavirus coverage regularly.

“I stopped following news about coronavirus some time ago. It was making me depressed.” (A female teenage respondent)

Some respondents mentioned that following media coverage had been helpful as it allowed them to prepare themselves for the possibility of contracting the coronavirus.

“I was not surprised about it. I knew what to expect. I had heard so much about it over the past weeks.” (Female respondent from a family with teenagers)

Everyday routines

Not many respondents took precautions with their living arrangements to protect others in the household from coronavirus. Some considered their house too small to take any special precautions, others felt it unnecessary because they discovered the infection late and accordingly had been living together without precautions for a while. A few respondents had not thought of such precautions or they explained not having received any such instructions from the health authorities. Those who organized their everyday life to avoid transmission of the virus within the household slept in different rooms, lived on different floors or in other areas of the house, used separate kitchen utensils, separate toilets and bathroom, or undertook more intensive cleaning procedures.

Leaving the house during quarantine varied from those who did not leave their house the entire time to those who took short walks and those who took a regular walks with their dog or children on a daily basis. Some participants were far too sick to leave their house, and others were unsure about what they were allowed to do and discussions in WhatsApp groups confused them further.

”They said we can go to the backyard. But we do not have a backyard. We live in an apartment building in the middle of the city.” (Female respondent from a couple without children)

Family relations

Some respondents believed that quarantine created tension at home between the household members. One respondent explained her child was having constant tantrums due to the shift from an active lifestyle to being at home. But several respondents saw some positive developments from quarantine, such as getting closer to their partner, having more time as a family, or time to relax.

“We have gotten closer one another due to this experience that we shared.” (Male respondent from a family with no children)