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Research Article

Social Distancing among COPD Patients during the COVID-19 Pandemic – A Qualitative Study

ORCID Icon, ORCID Icon, ORCID Icon, ORCID Icon & ORCID Icon
Pages 549-556 | Received 31 May 2021, Accepted 22 Aug 2021, Published online: 05 Sep 2021

Abstract

To limit the ongoing COVID-19 pandemic, social distancing was introduced globally in the first half of 2020. COPD-patients were identified as a group at special risk in connection with the SARS-CoV-2 infection. Hence, social distancing has been important in this group of patients. However, little is known of the motives and consequences of social distancing in these vulnerable patients. The aim of this study was to explore the perspectives and experiences on social distancing among COPD-patients during the COVID-19 pandemic. Patients in this qualitative study were selected strategically, equally allocated between gender and age to obtain maximum variation. Data were collected using individual semi-structured telephone interviews during June and July 2020. The interview guide focused on three themes; life before, under and after the COVID-19 lockdown. A total of 18 patients (8 females, 10 males) participated. Four themes were identified as important for social distancing among COPD-patients: ‘Being at high-risk and obtaining control’, ‘Protecting one life while missing on another’, ‘Social relationships and distancing’ and ‘Looking into the future’. The results increased our knowledge of patients’ experiences of living with COPD during COVID-19 in which anxiety and fear of getting infected made patients control their surroundings through strict precautions. This led to a feeling of loneliness due to social distance and an altered life-illness balance, as they protected one life while missing on another.

Introduction

Chronic obstructive pulmonary disease (COPD) is the most prevalent respiratory disease in the world [Citation1]. Patients suffer from dyspnea and exacerbations of the disease, and are prone to lung infections in general, as well [Citation2]. COPD is one of the leading causes of morbidity worldwide [Citation3] and patients suffer from multiple comorbidities [Citation4, Citation5], amongst those anxiety and depression [Citation6] and the disease is associated with impaired Health Related Quality of Life (HR-QoL) [Citation7–9]. COPD is rarely diagnosed in patients below the age of 40 and most prevalent in people above the age of 60 years [Citation10]. Social vulnerability is often seen in COPD patients [Citation11]. Many of the patients have poor social networks [Citation12], and with decrease in mobility plus increase in dyspnea relations are difficult to withhold, yet patients do not replace lost life values with other values [Citation13]. In addition to COPD in itself, comorbidities and age makes COPD patients a very frail patient group [Citation14].

In March 2020, The World Health Organization (WHO) declared the coronavirus disease 2019 (COVID-19) as a pandemic [Citation15]. COVID-19 is transmitted through contact with respiratory droplets from an infected person [Citation16]. A community mitigation measure to reduce transmission of microbes by terms of physical distance and limited social contacts is social distancing [Citation17]. In a general population, a model of social distancing has shown a tentative reduction of the cumulative influenza attack rate by 23% [Citation18]. Models from the present COVID-19 pandemic predicts a reduction in severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infections by >78% when combining quarantine, school closure and workplace distancing [Citation19]. To limit the ongoing COVID-19 pandemic, social distancing was introduced globally in the first half of 2020, and introduced in Denmark from midnight on March 12, 2020 [Citation20]. Social distancing has, however, in previous outbreaks of infectious diseases, proven stressful to the general population [Citation21–23]. The Danish Health Authorities have, in collaboration with the Danish medical societies, identified patient groups at special risk in connection with the SARS-CoV-2 infection [Citation24]. Amongst those are COPD-patients, and as such, social distancing has been important in this group of patients. However, little is known of the motives and consequences of social distancing in these vulnerable patients. The aim of this study is to explore the perspectives and experiences on social distancing among COPD-patients during the COVID-19 pandemic.

Methods

To gain insight into COPD-patients’ perspectives and experiences on social distancing during the COVID-19 pandemic, we adopted a qualitative approach using semi-structured individual interviews [Citation25].

Participants

A purposeful sample of patients with COPD were selected from the out-patient clinic at the Department of Respiratory Diseases, Aalborg University Hospital, Denmark. Inclusion criteria were patients diagnosed with COPD and able to speak and understand Danish. Participants were selected strategically, equally allocated between gender and age to obtain maximum variation. As such, two women and two men from each 10-years’ age groups (from their forties to eighties), were approached. They were invited to participate by the patient responsible physician and signed informed consent after agreeing to participate. The nature of the study was explained in writing and verbally to the participants. Two patients withdrew consent, leading to a sample of 18 participants. Characteristics of patients are presented in .

Table 1. Sociodemographic details.

Data collection

Data were collected using individual semi-structured telephone interview [Citation25]. Due to the COVID-19 situation, telephone interviews were used as a medium as it made it possible to get accesses to patients with COPD. The interviews were conducted by a sociologist (first author) and a nurse (second author), who called the participants before the interview to confirm the participation and to schedule date and time for the interview. The interviews were conducted during June and July 2020, after the more restrictive lockdown was over. Lockdown was enforced from March 12th with relaxation of restrictions introduced on May 26. To ensure consistency in the interviews, a semi-structured interview guide was developed with open-ended questions. The interview guide was divided into three parts; life before, during and after the COVID-19 lockdown (see ). Each topic was explored through open-ended questions and the researcher had prepared supporting questions in case the informant did not understand the question, or if the answers were short and less detailed. The interview lasted between 17 and 55 min. The interviews were audiotaped and transcribed verbatim.

Table 2. Semi-structured interview guide.

Data analysis

To determine the variation, common threads and themes in the participants’ experiences, the transcribed text underwent an inductive qualitative content analysis [Citation26]. Qualitative content analysis is commonly used to describe differences and similarities in the manifest content and to interpret the latent content in the phenomenon under investigation [Citation26]. The transcriptions were read through several times to get an in-depth understanding of the content. The text underwent open coding by being organized into meaning units, carefully condensed to avoid losing relevant content or important nuances. Each meaning unit was labeled with a code. The codes were sorted, based on differences and similarities, and interpreted into groups. The latent meaning running through these groups were interpreted and categorized then abstracted into themes [Citation27]. Throughout the entire analysis, codes, groups and themes were compared with the original texts until consensus was achieved among the authors [Citation28].

Ethics

The study was conducted in accordance with the ethical standards by the Declaration of Helsinki [Citation29] and was approved by the Danish Data Protection Agency (ID 2020-066). In Denmark, qualitative studies do not need further approval from The Ethics Committee. All participants were given both oral and written information about the study and informed written consent was obtained before participation. Confidentiality and anonymity were secured. It was emphasized that participants could withdraw their consent at any time without consequences for current or future treatment.

Results

A total of 18 interviews were conducted representing 8 males and 10 females. Patients had been diagnosed with COPD between 2 and 20 years. The age ranged from 47 to 87 years. The majority (14 patients) were living with their spouse/partner, and three had children in their household. Last measured lung function (FEV1%) ranged from 15 to 73%. Most patients were retired from work (n = 11), some as age retirement others as disability retirement, due to their COPD diagnosis. The patients’ sociodemographic details are summarized in .

Prior to the COVID 19 pandemic, patients felt their everyday life was challenged by their impaired lung capacity and they all experienced a decreased activity of daily living and a restricted social life due to their COPD diagnosis. The most affected patients were those with chronic respiratory failure. Primarily, the elderly and patients with low FEV1 had restricted social lives as some did not leave their homes more that 2–3 times per week and rarely had visitors. In contrast, the younger patients, with the highest FEV1 were out every day and had family and friends visiting. Of these, seven were still attached to the labor market, some part-time others full time ().

The analyses revealed that COPD patients had both similar and diverse experiences regarding social distancing during the COVID-19 pandemic. Four themes emerged from the interviews: Being at high-risk and obtaining control, Protecting one life while missing on another, Social relationships and distancing and Looking into the future. In the following section, findings supporting each theme are described and substantiated by quotations from patients’ interviews.

Being at high-risk and obtaining control

During the pandemic, the health authorities placed patients with COPD in the group of patients being at ‘high risk’. This grouping corresponded well with the patients’ own understanding of their illness and condition. However, our findings indicate that being at increased risk had changed their life-illness balance as the COPD now seemed to dictate their daily life, work life and social life to a much higher degree than before the pandemic:

Well, I was told that elderly and the ones suffering from certain diseases, they are at risk, at high risk. That’s why I have done what I have done [isolation] (ID8).

The risk of COVID-19 leading to severe illness and ultimately dying occupied the minds of majority of the patients. One patient said:

I am a little afraid, because I don’t want to get the disease that I am trying so hard to prevent. First, I am struggling with breathlessness and my health, and secondly, I am in the age group where I can easily catch something (virus) (ID3).

Thus, their lung disease required more restrictive precautions for keeping social distance during the pandemic than the general population. Some patients felt that the surroundings saw them as overprotective, which they interpreted as a lack of insight in the seriousness of the risk:

In a way I do understand them. It might seem baseless to be that worried. In that way I understand them, still … you may say, it’s not their life that is at risk (ID16).

To master their high-risk vulnerability, all patients tried to control the surroundings in the attempt to create a safe environment. Patients described their home as the safe base, but for some this base was disturbed by intruders hampering the social distance. In that way a patient described her concerns on health caregivers entering her home, as she felt their behavior was slack. Thus, she was keeping an eye on them, and demanded them to follow the official corona recommendations.

I’ve kept them [caregivers] at an arm’s distance. I have forced them [caregivers] to use hand sanitizer and sterilized the door handles because I know how sloppy they are. In that way I have tried to protect myself (ID3).

Another patient described:

If strangers came to my door, I didn’t open and talk to them. We spoke through a closed door. I simply didn’t dare to open (ID11).

Other patients described how they felt safe and secure when they controlled the situation and the surroundings. One stated that when going to the petrol station, he would wait to enter the store until everyone else had left (ID7). Another stated:

When there’s something I feel I can control, then I’m not that nervous. It’s more if I’m in a situation where I don’t feel I’m in control (ID16).

The need of being in control was also evident when the patients took additional precautions and restrictions than recommended by the health authorities, for example using disposable gloves during fueling (ID10), holding the breath while passing by other people (ID14), sterilizing everything like door handles (ID3) and shopping early in the morning, or online.

I must admit, when I go to a shop, I put on gloves. There are some people who look at me with a strange look, but I don’t give a damn about that. I have to take care of myself – no one else does (ID9).

Another questioned:

How can people in the store know that I have COPD and that they should keep a distance? We can’t constantly run around telling everyone or wearing a jumper that says ‘watch out – I have COPD (ID13).

Sticking to social distance restrictions and introducing additional precautions gave patients a feeling of control and made them feel safe. Patients primarily used the recommendations from the health authorities to guide their actions, however, being at high risk made all patients take extra precautions. From the patients’ experiences, the precautions suggested by health authorities seemed easier to handle by the surroundings. In contrast, they felt in opposition to the surroundings when introducing additional precautions. Patients reduced their social life significantly and some became dependent on others to bring them groceries and other necessities. Thus, their live were dictated by being at high risk during pandemic. As such, precautions seemed to alter their previous life-illness stability.

Protecting one life while missing on another

Patients expressed life during the pandemic as filled with anxiety, panic and hysteria and for some, the world was torn apart or put on hold:

During the first month, I felt the world was torn apart. Everything was like hell. My world was shattered, and I became rather panicky (ID13).

As COVID-19 causes an increased risk on patients suffering from COPD, the respondent’s expressed fear of exacerbation and ultimately dying. Dying is mentioned by most of the patients (14 out of 18) and the risk of dying was not as present in their thoughts before the pandemic.

‘I told my wife, if I get it, you might as well order a wooden box (coffin) for me, cause I’m not going to survive (ID6)’

Participants expressed that the worries about dying made them consider the value of social relations compared to staying alive, as social interactions are the main reasons for spreading the disease.

I think it’s all about getting rid of people up close because it’s contagious (ID3).

Another patient described:

Rather alive and lonely, than losing life. We have talked to our children and grandchildren about, what do we value the most? Is it a hug or being alive? We agreed on life … that’s the way it is, until the vaccine comes (ID18).

This resulted in patients isolating themselves in their homes, summer houses, allotment huts or in caravans, to make it possible to keep a social distance. Some even went as far as to stay away from home all by themselves, to let their close relatives (spouse or children) stay at home living a less restrictive and isolated life, without the risk of bringing COVID-19 back home to the patient. The isolation led to a schism as it in some families was beneficial for the relatives, but not always for the patient:

During the first three months I was isolated in the summer house. Well, mostly because of the family. Because my daughter was really afraid of passing on the infection to me, and my wife too. So, I thought, this is the best solution right now, and it was okay in the beginning, but as time went by, then it became difficult (ID16).

Being isolated led to a feeling of not being part of the society and it prevented patients in fulfilling their own expectations of life. For example a patient described visits to cafes as “being part of life” (ID18). This was not possible due to the pandemic, and particularly, not least for patients with COPD. The feeling of exclusion was more present in the younger patients who were still attached to the working force and who were living in families than patients living alone with few social relations.

Others expressed a need for keeping on living, despite a constant fear of being infected by the virus. They did not want the pandemic to control their lives:

I must live my life. Otherwise, I might as well just jump from a bridge. Then life is not worth living. If you can’t live your life, then there is no reason to be here (ID10).

Despite the different experiences and actions to handle anxiety and fear, anxiety and fear seemed to be the main reason for living isolated during the pandemic. Being isolated was expressed as being ‘tied to your home’ (ID8), ‘locked inside’ (ID9,16), ‘it was like being in prison’ (ID18) and ‘it was involuntary’ (ID6). The days felt long and without any kind of abstraction, and they missed social interaction. As such, a few patients with minor social interactions prior to the pandemic did not feel lonely at all, others chose, more or less, to live their life as before, despite the risk of getting the disease, however for all of those it was an active choice, given consideration. Patients experienced that living an involuntary, restricted socially isolated life based on anxiety and fear of getting infected negatively influenced their social life, relations and thereby their quality of life. Social distance meant protecting one life while missing on another.

Social relationships and distancing

Social distancing had an impact on patients’ lives as they suffered from lack of social and physical contact. The patients restricted social contacts in different ways. Some were completely isolated in several weeks only seeing family through a window and they had groceries delivered. As the weather got better, some saw families, friends, and neighbors in the garden:

The first eight weeks, I stayed inside. I only had a few visits from my daughter in the garden, and I could say hi to my grandchildren through the window […] Well, it’s because I miss getting out among people. Having others to talk to beside my husband now and then (ID7)

For some patients, the most difficult part was not being able to see their closest relatives; especially their children and grandchildren.

The hardest thing? The most difficult parts were the grandchildren. It has been difficult … I have seen them, we met outside, but it is extremely hard not to carry them and give them a hug (ID4).

Patients described how their relatives’ lives were affected. As they worried about passing on the infection some simply chose to stay at home or kept a social distance. In some cases, the relatives were more worried about the patients’ being infected by COVID-19, than the patients themselves, as they were afraid of losing the patient:

It worries my children and close relatives more than it worries me. It’s annoying that they worry, while I am calm and take it easy (ID8).

Everybody were afraid that I would get sick. Because I would probably be extremely challenged, and eventually die. Therefore, my children had some sort of panic-anxiety (ID10).

Due to the fear of bringing the infection home, some relatives stayed home isolated with the patients’: ‘[…]My wife, she is loyal, she stayed indoor (ID2)’. The patients were grateful for this solidarity; however, they felt they were imposing a burden and a ‘lack of freedom’ on the relatives.

I think it’s difficult for my husband because it also affects him that we don’t see anyone (ID4).

Other relatives did not have the option of staying home due to work, school, loss of income or other obligations, which resulted in worries and feelings of hysteria when distance was not obtainable. The relatives were afraid of passing on the infection to the patient:

‘My husband had some problems because he couldn’t get off work. So, he was practically hysteric at work if someone came too close. He was so afraid to bring it home and infect me (ID7)’.

Another patient described:

My wife runs a daycare at home. This provides problems as we have children coming into our home every day […] of course there is the financial issue, as she has a private daycare … as such, our private economy is at stake (ID13).

The above illustrates a schism between relatives protecting their next of kin at high risk, while having to engage in work related matters in- and outside the home. In addition, work issues included important economic concerns for the entire family. Generally, patients experienced that their closest relatives understood the precautions they took, although some tended to question their worries and concerns for the disease. As such, the ways to stay social distanced varied from totally isolation to less isolated which affected the families in different ways.

Looking into the future

When expressing thoughts about the future, the patients talked about returning to ‘normal life’ without social distance. Still, they did not believe that normal life would be the same as life before the corona pandemic

It’s a fear that has been planted, a fear that we cannot escape, and we must live with it. And, I think that we must learn to live with the disease in many years to come. I think that it is here to stay (ID10).

The patients believed that COVID-19 or variations of corona virus are here to stay. Therefore, the reopening of the society seemed worrying and the patients expressed that they would not feel safe until there is an effective vaccine available.

I’m just waiting for a vaccine that works, so I can go back to living a normal life again (ID10).

A vaccine could mean that you could feel a bit more secure (ID17).

Patients expected to master the reopening on their own terms by maintaining some restrictions, e.g. staying isolated, continuing hand disinfection and keeping distance to both relatives and others.

I still haven’t been to any family parties, I don’t go out shopping and I haven’t been to the hairdresser, I simply do not dare yet (ID7).

Most patients expressed that they understood the society’s need for reopening, but they suspected that reopening is more for the sake of private businesses, and not for the wellbeing of the population.

I am afraid that the economy is going to be the main reason for reopening more than necessary (ID13).

In the initial reopening period, COPD patients experienced that a minority of people became careless and stopped following rules and restrictions, which they found annoying, distressing and frightening. Furthermore, participants perceived such people as selfish and irresponsible, and their behavior would prolong the pandemic and negatively impact on their lives, and leave them at risk for a longer period.

It scares me that people are starting to take it so lightly and say that it is nothing but hysteria. I certainly do not think so. I think it’s awful (ID18).

The COPD patients expressed that they felt overlooked in relation to the reopening of the society. Although the risk of catching COVID-19 is low it is just as dangerous for patients at high risk. From the patients’ perspective this leads to a fragmentation of society with those in good health ignoring precautions whilst patients with COPD isolate themselves at home.

Discussion

The aim of this study was to explore the perspectives and experiences on social distancing among COPD-patients during the COVID-19 pandemic. Four themes were identified, and the findings revealed that the patients experienced that the pandemic led to several consequences on their lives. Our findings show that patients experienced an involuntary, restricted life based on anxiety and fear of getting infected. This led to missing out on aspects of life worth living for, particularly social interactions. Previous international studies have identified high levels of stress and anxiety due to the COVID-19 pandemic [Citation30, Citation31]. This particularly concerns people with existing medical conditions [Citation31]. Although COVID-19 affects people differently, patients with COPD are particularly vulnerable to COVID-19 as they are at high risk of developing complications and a poorer outcome [Citation24, Citation32]. Our study showed that patients were highly conscious about being at high risk, and they were fully aware of their potential risk of developing acute respiratory failure ultimately leading to death. This finding is consistent with Pleguezuelos et al. [Citation33], Mousing & Sørensen [Citation34] & Philip et al. [Citation35] that all have described the strong fear of COVID-19 in patients with long-term respiratory conditions due to the increased risk of dying. Patients described that their anxiety of being infected by COVID-19 was associated with a feeling of being out of control. Patients were dictated by being at high risk during the pandemic and they managed by controlling the surroundings and taking additional precautions. When patients were able to control the surroundings, they could create a safe environment, isolated from the virus, which gave them control and their feeling of anxiety disappeared for a moment. However, the fear of getting infected led to social isolation. Although patients dealt with their high-risk status, social isolation was perceived as difficult and particularly the physical separation from family and friends was a great sacrifice. This is consistent with Mousing & Sørensen [Citation34] where lack of physical contact was expressed as a feeling of suffocating loneliness, and a schism between risking dying from COVID-19 or dying from lack of social contact. The loss of physical social interactions with friends and families described by some patients led to a feeling of being excluded from life, and for some it even resulted in depression. This is in contrast with Pleguezuelos et al. [Citation33], who found that lockdown had a low impact on COPD-patients with scores in quality of life, anxiety and depression being similar to scores 12 months before lockdown.

The full consequences of social and physical distancing on mental health are not known [Citation36], however the current study clearly shows how patients’ everyday life was affected by the situation. Some took numerous precautions to not only reduce their risk, but also to protect their family members from being afraid of bringing the virus to their homes. Hence, this suggests a double precaution that places further complexity and strain on an already vulnerable patient population. In a rapid review of the psychological impact of being quarantined, Brooks et al. [Citation21] identified that loss of usual routine and reduced social contact often cause frustration, and a sense of isolation from the rest of the world. Even though the patients in the current study were not quarantined as such, they chose self as a way of handling their fear. This is consistent with the stressors identified in the review that included fears of infection, frustration and boredom and a sense of isolation [Citation21]. Even though the patients had made the decision to engage in and maintain self-isolation, as well as included additional precautions such as using disposable gloves and getting their groceries delivered, they experienced that their world was torn apart and put on hold. This cements the complexity of the COVID situation for people with COPD and the severe consequences that COVID has had on the patients’ and their relatives’ everyday lives.

Our study identified that people with COPD have profound concerns regarding the impact of COVID-19. Consistent with these findings, Philip et al. also found anxieties regarding their own and others’ vulnerability to COVID-19 and a pervasive uncertainty on how to deal with their situation now and in the future [Citation35]. Our study has added to these findings by suggesting that despite being able to be getting back to normal, most were frightened as they experienced that some people during reopening had become careless and stopped following rules and restrictions. This may be viewed in line with recent studies [Citation34, Citation35] suggesting that some patients felt forgotten and that nobody cared about them. Our study supplements these findings by patients elaborating that they felt that economic reasons were prioritized over the health of high-risk patients such as themselves. There is reason to assume that such feelings may have promoted feelings of neglect by society posing additional consequences from isolation and distancing from family, friends and the surrounding society. When the country was in lockdown, the protection of high-risk groups prevailed. However, the feeling of protection faded as economic forces encouraged easing the restrictions and reopening society. In Mousing & Sørensen [Citation34], a COPD-patient described this as ‘going from being cared for to becoming the down prioritized and the forgotten’. Uncertainty of the future was evident, and several described that a vaccine was the most promising strategy. Hence, our study are in line with recent studies [Citation34, Citation35] suggesting that patients with COPD hoped for normality as soon as vaccines were in place. However, none of the patients believed that they would go back to life the way it was before COVID-19. This highlights the fear that had been solidly planted in COPD patients; even though a vaccine has been approved other challenges have arisen such as mutations. This means that some patients with COPD will maintain in social isolation for a long time, and some may find it difficult to see themselves out of the high-risk role/group making it difficult to return to life the way it was before COVID-19.

Limitations

If we had interviewed the patients closer to the first lock-down, we might have reduced recall bias. Due to the risk of getting infected, face-to-face interviews were not an option. Telephone interviews are often not recommended in the qualitative research literature due to the absence of visual cues in the telephone resulting in loss of contextual nonverbal data [Citation37]. However, the interviews in this study allowed the patients to feel relaxed and able to disclose sensitive information. In addition, most COPD-patients have difficulties breathing, and it can be assumed that a physical meeting may have influenced their energy and breathing and hence not completing the interview. Since data collection, vaccines have been introduced possible influencing the patients’ options of living more normal lives as indicated in the last theme.

Conclusion

This study showed how the first months of the COVID-19 pandemic have led to several consequences on the lives of COPD-patients. Anxiety and fear of getting infected made the patients control their surroundings through restrict precautions. This led to a feeling of loneliness due to social distance and an altered life-illness balance, as they protected one life while missing on another.

Acknowledgement

The authors thanks participants for spending their time and sharing their valuable experiences.

Declaration of interest

The authors report no conflict of interest.

References

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