The Covid-19 coronavirus disease, which first appeared in Wuhan, China in late 2019, has become a pandemic in 2020. Despite the introduction of the vaccine in 2021, it caused 298.915.721 confirmed cases and 5.469.303 deaths in the world within two years [1].

Covid-19 can be asymptomatic or cause a respiratory disease that can lead to death as a result of severe lung disease.

Patients with underlying diseases during Covid-19 infection were reported as a higher risk group by the CDC (Centers for Disease Control and Prevention). These include asthma, bronchiectasis, Chronic Obstructive Pulmonary Disease (COPD), interstitial pulmonary disease and chronic lung diseases such as idiopathic pulmonary fibrosis, cystic fibrosis, pulmonary embolism and pulmonary hypertension (People with Certain Medical Conditions). 

7 of the top 10 causes of death in the United States are due to chronic diseases [2].

Today, lung transplantation has become a preferred treatment method all over the world in end-stage lung diseases [3].

The World Health Organization defines the concept of chronic disease as permanent and increasingly damaging, irreversible conditions that require long-term surveillance and care. The difference of these diseases from acute diseases is that the disease does not heal, progresses, and is not limited to itself [4].

Lung diseases (COPD, asthma, sleep-apnea disease, bronchiectasis) constitute an important part of chronic diseases. COPD is one of the most common chronic lung diseases. This is followed by cystic fibrosis and interstitial lung disease. COPD is also the second most common lung transplant disease in the United States [5]. Apart from COPD, lung transplantation is an option in other rare diseases such as bronchiectasis, cystic fibrosis, pulmonary fibrosis, pulmonary hypertension.

Lung transplantation is a life-saving treatment method in end-stage lung diseases. However, these patients are lost during the waiting period for transplantation due to both the lung disease itself, which is the cause of transplantation, and infections such as covid-19.

Bio-psycho-social pre-assessments are made in order to prepare patients with lung transplantation indication and transplant list for possible lung transplantation.

One of these evaluations is the general condition evaluation, in which the psychosocial status of the patient is also evaluated. It is very important to evaluate the psychosocial status of patients who will encounter this process for the first time. In this process, the following information about the patient is searched: the diagnosis of the disease, the duration of the disease, which organ is waiting, age, gender, marital status (if married, spouse and child), work life, place of residence, social security, with whom he lives, social environment, relatives. contact information, smoking history, alcohol and substance history, the patient's psychological state, anxiety and depression level, medications used by the patient, information of relatives who can provide support, economic status, transportation status [6].

Psychosocial status assessments are made on the following subjects: The patient's formal and informal (such as his family) social support systems, his emotional and mental readiness, his ability to make decisions, his expectations for organ transplantation, his ability to cope with his negative mental state related to his illness [6].

The lung transplant team includes chest surgeons, pulmonologists, nurses, psychiatrists, psychologists and social workers. The lung transplant team evaluates the coping skills of patients presenting for lung transplant at every stage of the process.

Uncertainty experienced by transplant candidates and their families and concerns about being placed on the waiting list increases the stress levels in the transplant process. The transplant team can encourage candidates to interact with other candidates and support each other, which is also important for the socialization of individuals [7]. Many psychiatric problems, especially depression, panic, anxiety and adjustment problems occur during the organ transplantation process [8,9]. Hopelessness, worry about the future, deterioration of bodily integrity, thoughts of being physically attached to another person can cause anxiety in this process [9]. In addition to these, there are concerns about problems in family relations, problems with work life, sexual function problems, compliance problems with the compelling medical process, rejection of the transplanted organ by the body [9]. The prevalence of depression or anxiety disorders in lung transplant recipients during the first year after transplantation has been reported to be 30% [10]. 

Often in transplant patients, physical and emotional well-being is enhanced by the presence of a primary caregiver, their spouse or other important person in their life. Caregivers undertake some of the responsibilities that they were responsible for in the patient's previous life, closely monitor the patient's health status, monitor the patient's medication use, help him achieve optimal adaptation to the new lifestyle, communicate regularly with the transplant team, and take on the role of the patient's advocacy. In addition to these, these people who provide the care of the patient accompany the patient to and from the health institution and provide emotional support to the patient [11].

Chronic diseases affect the future plans of families as well as patients, confront individuals and their families with emotional and financial difficulties, and create tensions in interactions between family and friends [7,8]. Concern about the future life of chronic patients and their families, concern about the physical appearance of the patient, lack of confidence in the success of the treatment applied, fear of being dependent on others, and death anxiety cause feelings such as helplessness and hopelessness in patients [12].

There is a lack of research in the literature on people who provide home care for those with chronic lung diseases and lung transplants [13].

Worries before organ transplantation may manifest themselves as survival concerns after transplantation. In lung transplantation, patients have to live close to the organ transplantation center for about 9-24 months in the post-transplant period, and this causes the patient to experience economic problems [9]

It is seen that one of the most important needs of patients with chronic diseases and their relatives is social support [12].

Social support systems in which caregivers are involved can be handled in two ways, formal and informal. For formal systems, official institutions and organizations, non-governmental organizations and voluntary organizations that provide services within a legal framework can be given as examples. Informal support systems can be people with whom individuals have close relationships, their families, relatives and people who contribute to individuals in any way [14]. 

Most lung transplant programs require patients to have a primary caregiver first [13].

Lung transplant candidates' lives are severely disrupted both by a threatening lung disease and by being involved in an organ transplant. Experiences in this process show that especially informal social support systems are very valuable [7].

Especially in low-income transplant candidates, most of the caregivers are informal individuals.

Economic and psychosocial problems faced by patients and their relatives in the field of medical social work can be experienced more intensely in patients undergoing organ transplantation. Psychosocial support of social workers and psychologists in the transport team in hospitals is important. Within the scope of medical social work, it provides professional interventions at micro, mezzo and macro levels to increase the psychosocial functionality levels of individuals waiting for transplantation and to ensure their continuity. Social workers, who evaluate patients and their relatives in an economic and psychosocial context, try to ensure that patients have access to services and resources [15].

The concept of social support can be examined in terms of emotional, material and mental. Emotional support is meeting the social needs of the individual such as love, attention, being a part of a group. Financial support is meeting the economic needs of people in times of need by others. Mental support, on the other hand, can be defined as information that will support individuals to solve their problems [16].

Social support has positive effects in coping with the problems faced by the individual. Social work discipline also aims to empower individuals by improving their coping skills with negative situations [17]. 

In the study, which investigated the liver, kidney, lung and heart transplantation conditions in 22 countries during the Covid-19 process, the number of transplantations decreased by 15.92% in all countries, while the number of lung transplantations was the second most decreased after kidney transplantation. During this overall reduction in transplantation, 48,239 patients on the waiting list died [18].

In patients whose survival is dependent on transplantation, both the stress of infection caused by Covid-19 itself and the stress created by the decrease in the number of transplantations in the Covid-19 pandemic have caused more psychosocial problems.

Disasters are events that affect people both directly and indirectly bio-psycho-socially and economically. In disasters, especially vulnerable groups such as the elderly and children, chronic patients are affected much more.

In the Covid-19 pandemic, the elderly and those with chronic diseases suffered more. In addition to the basic needs for these vulnerable groups, special disaster planning including bio-psycho-social and economic support systems should be made.

One of these vulnerable groups is chronic lung patients who are waiting for lung transplantation to survive. However, there are studies related to these groups in the literature.

This study was conducted to determine the bio-psycho-social and economic problems of patients awaiting lung transplantation due to lung disease during the Covid-19 pandemic, which has not been studied much in the literature, and to investigate the contribution of formal and informal social support systems.

In this study, in-depth interviews were conducted with 21 patients who were on the waiting list for lung transplantation at the Koşuyolu Yüksek İhtisas Training and Research Hospital of Health Sciences University. Ethics committee approval (dated 16.11.2021 and 2021/16/558) was obtained from SBU Koşuyolu Yüksek İhtisas Training and Research Hospital to conduct the study. In addition, institutional permission from Koşuyolu Yüksek İhtisas Training and Research Hospital and permission from the Ministry of Health to conduct "Scientific Research Studies on Covid-19" were obtained for this research. In this qualitative research, one-to-one interview technique was used. Data were collected using a voice recorder with the permission of the participants. The participant was informed before the interview that the recorded interview would be kept confidential within the framework of the principle of confidentiality. In the study, the participants were asked questions about their demographic characteristics, current chronic diseases, biological, psychological, economic and social problems they encountered before and during the Covid-19 pandemic, and the formal and informal bio-psycho-social support they received. The data were analyzed by dividing them into themes according to the answers of the participants.

Of the 21 patients (lung transplantation candidates) included in our study, 61% (n = 13) were male and eight were female. While 47.6% of all participants were married, 61.5% of men (n = 8) and 25% of women (n = 2) were married. 

The mean age of 21 transplant candidates included in the study was 36.67±14.023 (Median: 39, Min: 18, Max: 61). The mean age of male patients (41.62±13.351) was statistically significantly higher than the mean age of female patients (28.63±11.351) (p = 0.035).

85.7% (n = 18) of the transplant candidates were not working in any job. While only one of the female patients was working, 87.5% of them were not. While only two of the male patients were working, 15.4% were retired, 15.4% were retired due to disability, and 53.8% were not working in any job. (Figure 1)

Of 21 transplant candidates, 28.6% had boronectasis, 19% had COPD, 19% had pulmonary hypertension, 9.5% had cystic fibrosis with bronchiectasis, 9.5% had interstitial pulmonary disease, 4.8% had COPD with bronchiectasis, 4.8% had cystic fibrosis and 4.8% had idiopathic pulmonary fibrosis. (Figure 2)

The responses of the patients who are candidates for lung transplantation during the Covid-19 pandemic to our study are grouped under 8 headings.

Fatalism in the Perception of Illness as a Divine Power

Fatalism is a belief that sickness is given by Allah and that healing will be given by Allah. This is actually a mechanism for making sense of the difficulties they experience and coping with the disease. So much so that an individual, who has had difficulty breathing for a long time, can take shelter in his creator in order to make his life more meaningful, alleviate his pain and overcome his fear of death.

“I was not so afraid. Whatever happens, happens, and so does this disease. I can't live longer no matter what anyone does. There is a life determined for me and I will live it. I believe that.” (K.A., age 51, COPD, Male, Married).

Figure 1: Employment status of patients who are candidates for lung transplantation

Believing in destiny is more than just giving meaning to life and illness for them. It also means to be able to overcome the disease and to believe that Allah can heal them by offering them good things. Believing in the existence of Allah helps patients feel good and healthy.

- “I am a human after all and I am a servant of Allah. Allah will take the life given by Allah. … Allah helped us. I had no such strength. I don't know how I got over it either. It means that Allah still gives me such strength that I can easily overcome it.” (A.İ., 61 years old, Idiopathic Pulmonary Fibrosis, Male, Married). 

- “I wasn't too scared. Everything is from Allah. If it does, it will happen anyway.” (K.S., age 28, Pulmonary Hypertension, Female, Married).

Hastalığını iyileştirmek için çeşitli girişimlerde bulunsa da, kaderinde "yazılı" olanın gerçekleşeceğine olan inancını da sürdürmektedir.

“I believe in destiny. I just want to have a lung transplant in order to live my life better. If I have 5 years left to live, I will live 5 years anyway. But I want to live those 5 years well.

I want to work again; I want to earn money. … My life will not be longer if I get a transplant. Who can prolong the life given by Allah? I just think that if I get a transplant, I will live the rest of my life better.” (K.A., age 51, COPD, Male, Married).

“I fear no one but Allah. I think whatever happens, it will happen. So is the disease in Corona. For example, if an organ will come out for me, it will be from Allah, and if it will not, it will be from Allah. I believe in destiny, and I don't believe in anything else." (B.R., 29 years old, Bronchiectasis, Male, Single).

Social Isolation and Loneliness due to Chronic Disease During the Covid-19

Those who are waiting for a lung transplant due to chronic lung disease have socially isolated themselves to avoid the Covid-19 epidemic. Individuals who isolate themselves both psychologically and physically are actually aware of this and experience this process.

“Of course, I lived more isolated from normal people during the pandemic process. In this process, I mostly went out for the hospital. You feel obligated to protect yourself. There is also a disease, can I cope with that disease? I survived the first one, but of course I restrained myself with the thought that the second could be much worse. For example, instead of going out three times, I went out once.” (Ö.M, age 41, Pulmonary Hypertension, Female, Single).

Figure 2: Lung diseases of patients who are candidates for lung transplantation

Expressing that she had contracted the Covid-19 disease once during the process, the 41-year-old female participant stated that she was afraid that she would not be able to cope with the disease if she relapsed. She stated that she reduced the frequency of going out for this reason and limited herself in this sense.

In fact, the concepts of social isolation and loneliness are different. The participant said, “I was not alone in this process. As long as there are good people around you and people who love you, you are a little more comfortable” (Ö.E. 41 years old, Pulmonary Hypertension, Female, Single) She stated that he reduced the frequency of going out of the house voluntarily due to illness, but that she did not experience loneliness because there were people around her who valued her. 

“We used to go out on weekends with friends, we used to go to dinner. I can't go out because of Covid more than my own illness. I didn't go anywhere other than open places. I have a portable oxygen device that I can carry with me. I can go with it for a certain time anyway, I can plug it in and charge it when it doesn't arrive on time. So, I can't go out much because of this Covid." (A.İ., 61 years old, Idiopathic Pulmonary Fibrosis, Male) 

A 61-year-old male patient with a diagnosis of Idiopathic Pulmonary Fibrosis also stated that he participated in social activities with his friends before the Covid-19 pandemic, that he could no longer go out due to the Covid-19 epidemic, and similarly, his illness prevented him from going out due to the use of an oxygen device.

The participant said, “My wife and children are always with me. My wife is always with me. She is my nurse. My children also do not spare their support. They live close to me anyway” with the expression O.E. Similarly, he states that he isolates himself socially, but does not become lonely.

It is seen that transplant candidates, who have reduced the frequency of going out of their living spaces to protect themselves from the epidemic during the Covid-19 pandemic, do not experience loneliness despite isolating themselves socially. It is possible to evaluate this situation as the positive effect of family and close environment, which are considered as informal support systems within the scope of the research. 

“I did not meet anyone in the early stages of the pandemic. I only contacted by phone. Because I already had a disease and I protected myself a lot. But now we are meeting by keeping our distance.” A 48-year-old female participant using the expressions (Y.Ö, 48 years old, Bronchiectasis-COPD, Female, Married) stated that she did not meet with anyone in the early days of the pandemic due to her chronic illness. 

“I haven't called anyone for a while anyway. At one time, few people called me.” It is seen that the 55-year-old male participant, who used the expressions (Ö.Y, 55 years old, COPD, Male, Married), withdraws from his social relations for some periods and experiences loneliness. While talking about friendships during the illness, the participant said, “Here they are calling, sometimes I am. I don't want to be a burden to anyone. They always tell me to call us. Otherwise, I do not call anyone to bother them, I do not call in case they think that I will ask them for something” also indicates the similar thoughts of the participants.

At the same time, some of the participants found it scary and worrying to be alone during the illness process. 

“It is a terrible thing to be alone and think about the disease all the time. At this point, the family is very supportive. Being alone in this process is very scary.” The participant who used the expressions (Y.Ö., 48 years old, Bronchiectasis-COPD, Female, Married) found it worrying to be alone during the illness process, and also cared about the influence of the family, which is the informal support system.

The existence of social capital as informal support systems can be very important and meaningful. There may be fears such as loneliness and alienation from the environment, especially for individuals who are introverted and experience social isolation. In this sense, the existence of social support systems is very meaningful in order to support individuals.

Fear of Death During the Covid-19 Pandemic

Due to the fact that the transplant candidates participating in the research also have a chronic disease, it is seen that the fear of catching the Covid-19 epidemic and death as a result of being caught in the epidemic occurs. 

- “You are getting scared if I am caught in the pandemic. What if I'm caught. You see the deaths, you are already affected psychologically. Also, you think about "to die in a lot of pain"... That is, to stay intubated for days or something. That is me… Of course, I lived more isolated from normal people during the pandemic process, let me tell you that.” (Ö.E., 41 years old, Pulmonary Hypertension, Female, Single).

The 41-year-old female participant participating in the research stated that she experienced the Covid-19 disease once, she was afraid of having the second one much more difficult, and that having a lung disease aroused concern about coping with the Covid-19 disease. At the same time, the participant stated that he was psychologically affected by the deaths experienced during the pandemic process and that he was afraid of dying by suffering a lot. 

“At first, I was very scared. I said, so I will die straight away. I said the healthy man is dying. No one came in or out of the house. I am doubly impressed by normal people. And when you hear that this thing affects lung patients more... People are inevitably afraid, you say that they will be caught somewhere, you say how does that body react when I'm caught, you say that if normal people can't recover, I guess I can't get better at all.” (Y.B., 36 years old, Bronchiectasis-Cystic Fibrosis, Female, Single). 

“When we first heard about Covid, I was scared. We got into a protection thing at home. I said okay, if it was me, I would die. We wash and clean everything that enters the house.” (Y.B., 36 years old, Bronchiectasis-Cystic Fibrosis, Female, Single). 

“I am very afraid of Covid in the pandemic because I think I have no chance if I get caught. I still think so. Because even in my current state, I have a lot of trouble breathing and it really scares me.” (V.O., 23 years, Bronchiectasis, Male, Single).

“Of course we were afraid of being corona. We are already weak, we are weak from the disease. We were afraid that this disease would kill us.” (Ö.R., age 47, COPD, Male, Married.

Sick individuals who think that there is nothing they can do in the psychology of "learned helplessness" put themselves in a depressive mood. This situation can cause them anxiety for the future and the moment they live. In this sense, informal and formal support of individuals within social support systems is important. 

“Man is afraid of what he does not know, and I was afraid because I did not know what it was. There is a virus that we do not know what it is, and the one caught either got very sick or died. That was my first fear. I was also afraid that something would happen to me because I was sick too. At first, I was very afraid of the virus coming to Turkey. I was afraid that something would happen to my relatives. But now I'm used to the process and my fears have lessened a bit.” (A.A., 18 years, Pulmonary Hypertension, Female, Single). 

“One is afraid of dying. Because you are already sick, this disease is killing such patients. I was caught without realizing it, I was having it. Since I've always been sick, I already had these symptoms. I thought it was because of my illness. I got scared when I found out. Relatives want to come, cannot come due to the pandemic. Nobody wants to come because of the virus. I used to be able to go wherever I wanted.” (C.M., 48 years, Bronchiectasis, Male, Married).

The 39-year-old male patient who participated in the study stated that the lungs of the donors would be adversely affected due to the covid-19 disease affecting the lungs, and this situation aroused concern about the fact that he would receive a lung transplant. He also stated that the decrease in transplants during the pandemic process scared him. Expressing that his concerns are not from the pandemic, but from the effect of the pandemic process on organ transplantation, the participant expressed that he thinks that he can be protected from Covid-19 disease if he takes precautions.

“I'm sad like this, I think that because the pandemic goes directly to the lungs, because it harms the lungs of young people, it will be a little difficult for us to have a lung transplant. This made morale upset. It's a pandemic, but you take precautions. It is the tube (oxygen tube) that is difficult for me. Terrible shortness of breath. Because the pandemic will pass. I wear my mask, after they are vaccinated… Also, transplants have decreased in the pandemic. He was a little scared. I was afraid it would come to me. I was afraid that it would happen anymore.” (T.A., 39 years old, Interstitial Lung Diseases, Male, Married). 

A 55-year-old male patient stated that he was psychologically affected due to the disruption of organ transplantation during the pandemic process. In particular, the interruption or cancellation of organ transplants can cause traumatic consequences for sick individuals. Suspension of transport processes, especially due to environmental factors, drags them into a psychologically challenging period. In this case, it is important to provide psychological professional support services of the state as formal support systems.

"We didn't know what we were going through. My organ work stopped. I came here and talked to the teachers. At first, I was going to have a transplant soon, but the corona virus started…then the transplant business stayed that way. … In the past, I had to watch that series, I had to watch this (TV series movies). There is no such thing now. It affected me psychologically, that is, morally.” (Ö.Y., 55, COPD,Male,Married).

Economic Situation During the Covid-19 Pandemic Lung Disease and Anxiety

It is seen that anxiety is experienced intensely especially during the Covid-19 pandemic process. Although there are individuals who reduce their anxiety with the belief of destiny, the existence of individuals whose anxiety levels increase is also noteworthy. Anxiety stems not only from the fear of losing one's life, but also from the fear of being away from or losing everything he loves and values. Especially during the pandemic process, the anxiety of patients who care about the life of their loved ones rather than their own life is seen. In the pandemic, death and being away from loved ones have increased anxiety. Apart from this, the loss of job and the loss of income experienced by lung patients during the pandemic process have been important causes of anxiety in their social lives. 

“I have lost income. You become anxious, you have anxiety about the future. Because the house is rent, there are bills to be paid.” (Ö.E., 41 years old, Pulmonary Hypertension, Female, Single).

For some sick individuals, loss of income has not been a process experienced only during the pandemic process. Many patients experience a decrease in income as a result of job loss due to illness. In particular, patients may become unemployed due to the inability to do their job or the decrease in their capacity to do their job after the illness. In such a situation, the loss of income can lead to a decrease in their motivation and lack of self-confidence. 

- “When you try to do something, that illness always gets in the way. You can't go anywhere alone; you always have a trust problem behind. … I was a working person until the age of 30, I didn't stay in the house, I didn't live and I was in the position of being a householder, that's the call and I said what am I going to do from now on. Doctors say you can't work, you shouldn't get tired. I was working in the public relations department of a restaurant. As a result, I cannot imagine a future. If I go somewhere, I can't go, someone always needs to be with me and they need to do an examination” (Y.B., 36 years old, Bronchiectasis-Cystic Fibrosis, Female, Single).

There were also students who experienced disruption in their education life or had to leave during the disease and pandemic processes. For them, the interruption of education life by illness is a situation that increases their future anxiety and prevents them from feeling well. Individuals who could not attend classes such as physical education during the education period, especially the anxiety of loneliness increased. Convincing the people around that they are sick is also a difficult process for them. Being treated as if they have an ordinary disease and not being understood negatively affected the level of anxiety of individuals. 

“During the pandemic.. My discomfort had increased in thelast few years.. In the tenth grade, I even came to the point of dropping out of school. I said I will leave. I didn't even go to school for 26 days. Then they said that the gendarme will come. Due to absenteeism.. They did not believe in my illness. I'm coughing but.. My teacher didn't believe I was sick or anything.” (N.B., 20 years old, Cystic Fibrosis, Female, Single)    

“I would continue my education. I can't right now. This disease is preventing me from doing everything.” (T.B., 20, Bronchiectasis, Female, Single).

There are many people who delay and lose their dreams because of their illness. Some of them could not be recruited to professions that require high physical strength, such as military service, and to military service. 

-“I had a dream of being a soldier and a police officer. If I didn't have lung disease... I could not join the military. They gave a sick report, I can't go even if I want to. They don't, I can't pass the inspection. If I had gone, I would have stayed in the military. I was going to get into something as a petty officer, officer, but it didn't happen. Due to illness. I mean, I was going to go to the army, I loved the military and the police, but it didn't happen." (B.A., 20 years old, Primary Pulmonary Hypertension, Male, Single).

Apart from all these, sick individuals who have problems with self-confidence also experience anxiety especially with the "get well soon" phone calls and visits from their family and surroundings. So much so that this situation, which constantly reminds the individual of his illness, pushes them to excessive anxiety and habitual helplessness. 

“There is a constant phone call to the house and visitors are coming. I'm dying, as if my funeral was about to come out." (Y.B., 36 years old, Bronchiectasis-Cystic Fibrosis, Female, Single).

Various institutions and the close circle of the individual support the individual in order to strengthen his financial opportunities in the loss of income after getting sick. This is not only a financial support mechanism for sick individuals, but also a psychological support mechanism. In this sense, financial support from the immediate environment or family contributes to individuals. 

“My relatives are supportive. I couldn't have done it without them. I am unable to work because of my illness. My wife cannot work because we have small children. At the moment, we do not receive any income in our house. We moved to Istanbul because I am a transplant candidate. We are renting here, thanks to a friend helping out. I couldn't have done it alone." (Ö.R., age 47, COPD, Male, Married). 

- “My brother was always with me. He got a job to support me. He was not working; he was dealing with village works. So are my mom and dad.” (K.S., 28 years old, Pulmonary Arterial Hypertension, Female).

It has been observed that some of the sick individuals who need help from the state do not have enough information about their rights. In this sense, while most individuals with chronic diseases receive disability pension, individuals who are not aware of this right cannot benefit from disability pension. 

“I did not know that I could receive disability pension. My wife could also get it because she was looking at me. We are working on it now. At least we pay our rent. There are children, I don't know how it will be." (Ö.R., age 47, COPD, Male, Married). 

“I just learned about the disability care salary when I came to the hospital. I'll deal with it now." (Y.Ö., age 48, Bronchiectasis-COPD, Female, Married). 

“We didn't know before that we could buy something from somewhere. When we came here, we learned that we can get it (after the social worker interview). I was saying, let's go to social services. Maybe there is, I was seeing on the news this patient this, that patient that… I didn't know about my own. The last time we applied for a transfer here, they said it." (N.B., 20 years old, Cystic Fibrosis, Female, Single).

The fact that the participants are unaware of issues such as chronic disability and disability pension, disability care salary highlights the importance of medical social work practices.

The Importance of Family and Close Environment as an Informal Social Support System During the Covid-19 Pandemic

The family is the first agent in an individual's social process. The family has an important place in socialization and transmission of social norms. In this sense, it is important for the family to be there, especially when the individual needs it. The relationship of sick individuals with their families as a social support system takes an important place in their lives.

Lung transplant candidates participating in the study evaluated the importance of family and close environment together with the pandemic and disease process, as they experienced lung diseases and the pandemic process simultaneously. Among the candidates, married participants mostly mentioned the support of their spouses during the illness, and single participants frequently mentioned the support of their mothers. 

- “She is the only mother for me. It doesn't do much, with or without the rest. But my mother is different. The absence of my mother brings a lot to me. She is the one I care about the most anyway.” (Y.B., 36 years old, Bronchiectasis-Cystic Fibrosis, Female, Single).

“Well, my mother made me feel the most, there is no lie. So does my father, but mostly my mother. The night was coming, sometimes she would look and cry. I was crying too.” (B.A., age 20, Primary Pulmonary Hypertension, Male, Single). 

“I'm single, my family has always been there for me and they never lost their support for a moment, they always took care of me, but especially my mother always takes care of me and does her best. They never let me down on this issue, they made me forget my illness, in fact, they are always with me, I love them all very much.” (V.O., 23 years, Bronchiectasis, Male, Single). 

“This is a difficult process… Because I am 41 years old. I never broke up with my mother, I was never married. I was the person who was always taking care of her – before she got sick – so we had a special bond with my mother.” (Ö.E., 41 years old, Pulmonary Hypertension, Female, Single). 

“Absolutely my mother. So was my father, but my mother was always by my side. My aunt and brother were always with me, my aunt always gave me morale. But my favorite person in this life is my nephew. Little 3 years old. … They are my everything. I can't do without them. How can I do? My mother does everything. I got corona and even then he didn't leave me alone. I said go, I said don't be too, but he was always by my side. Look, I'm with you now." (A.A., 26 years, Bronchiectasis, Male, Single).

When we look at the single participants, it is seen that they received the most important support from their mothers during the process, and they also had the support of their family members. In married respondents, it is understood that the primary caregiver and the person showing the most important support is usually the spouse. Spouses of individuals can be more effective for them than parental support. Especially a spouse who is always with him and who is always alone with his problems is in a position to offer all the support for his sick wife. 

“My wife was always supportive everywhere. It washes my head, my food sometimes. I can't prepare my food, he prepares and brings my food. He gets up 2-3 times a night and looks at it, I get choked up…. Family is always supportive. You cannot live without family. Whether it's a child, my family, a relative or a phone call…” (C.M., 48 years old, Bronchiectasis, Male, Married). 

“I am married, I have children. They have always been with me. They are my everything. My wife provides all kinds of support, thank you. I love him so much, he is my everything. I can't do without him. … I cannot do my work on my own. My wife supports me in everything.” (K.T., 39 years old, Bronchiectasis-COPD, Male, Married).

The 48-year-old and 39-year-old male participants stated that their spouses always support them and that their spouses provide self-care. The 48-year-old participant said “You can't live without a family” and the 39-year-old participant said, "I love him so much, he is my everything. I couldn't do it without him,” she replied. These answers show the importance of the family and the environment in which there is a close relationship, which are informal support systems. 

“Without them, I wouldn't exist (he's talking about his brothers). If I'm alive now, it's because of them. Sometimes I can't even meet my toilet needs myself. My older sisters are helping. I already live in my sisters house. My uncle, my sister, my nephew. They never leave me.” (S.M., age 51, COPD, Male, Single).

The 51-year-old male participant has never been married and lost his parents. The participant stated that he received the most important support from his older sisters during the illness and that their support during the illness was the reason for survival.

Social Relations of Sick Individuals and Tendency to Participate in Groups:

The fact that individuals living with an oxygen tube cannot do all the activities they want, lead them to a process of anxiety as well as exclusion or loneliness. In this sense, the loneliness experienced by sick individuals who cannot have a portable oxygen machine and the inability to do the activities that many individuals can do is a problem. Sick individuals, especially because they have lung disease and cannot travel with a portable tube, cannot go to the people they love, stay away from them and may be labeled as "sick". Even if this is not a deliberate behavior, it causes sick individuals to feel bad about themselves. Sometimes he wants to be alone. 

- “I can't get around, it's not always possible to go everywhere by car. I can't go with the tube. Why?..I come and go with the tube sometimes, people look at the tube differently even if it is in the car. They're so weird. They look weird. When I go with the tube, I do things, I get bored, when there is so much… most people are unconscious. I came to my cousin, my uncle's daughter. I'm waiting downstairs, I'm waiting by tube, they're coming by car. A boy sitting there says, "Did you come to build a brother lift?" Look, the man doesn't know, it's funny, we laughed too. I don't find it strange that people look at things without knowing what it is. But they need to think about this, this hose is coming, going to my throat. To say there is something, they have to understand something from it. We laughed with my brother.” (T.A., 39 years old, Interstitial Lung Diseases, Male, Married).

A 39-year-old male participant in the study complains that the oxygen cylinder makes his life difficult and that people look at him without knowing what the oxygen cylinder is. The participant states that his social life is restricted due to the difficulty of carrying the oxygen cylinder. 

“I have already left the place where I live because of my lung disease, as long as I can get a transplant. I have relatives here. I have them with me, but the talks have decreased. I don't want to talk to people because Corona affects us more than chronic patients.”(Ö.R., 47, age COPD, Male, Married). 

“I became very withdrawn from this illness. I'm so unhappy. I don't want to meet anyone. I don't want to see anyone." (K.A., age 52, Interstitial Pulmonary Disease, Male, Married). 

 “… I didn't talk to anyone during the pandemic, in fact, I can say that I switched to social media life, I talked over the phone constantly, I did not meet anyone face-to-face in any way because I was afraid in case something happened.” (V.O., 23 years, Bronchiectasis, Male, Single).

“Since I have this disease, everyone's attitude has changed, even the person I didn't talk to came and started talking. I don't like it that much. There is no need as most of them are utilitarian.” (B.A., 20 years old, Primary Pulmonary Hypertension, Male, Single).

There may also be social relations that are strengthened with the disease. Although it reminds them of their illness, there are also individuals who can be happy with the attention and support they receive from their environment and family. A sense of happiness is observed in individuals who are not exposed to the anxiety of being alone in their illness, especially with strong social capital. The purchase of a portable respirator by the shopkeepers of Ö.Y., who is a tradesman, is an event in which Ö.Y. is very happy and emotional while talking about it. In this sense, for individuals with strong social capital, social relations are a very important factor in making sense of their lives. 

“My friends bought me 18 billion. There's a charge. I don't have any money either. I told my friends. They asked me for a machine, but it's not the machine I use. I said I need it when going to the gym, commuting. They said, don't worry, don't get upset, we'll get it for you. They said how much money, I said I don't know. My shopkeepers also love me, thanks to them. God bless them. They said no matter how much money it took, then we saw that they took the machine, they gave it to the boy, take it to the father. All, all of them... neighbors made it, not my brothers. Actually, I expected it from my brothers. None of my brothers gave a million or anything like that. My daughter gave a billion, my neighbor above gave a billion, and the other 15-16 billion were collected by the neighbors. Small business. Tradesmen who love me gathered. May Allah be pleased with those people, I am neither my brother, nor my uncle. Look, they heard something like this for me, they shared it among themselves, and they bought it themselves." (Ö.Y., age 55, COPD, Male, Married).

It is known that there are various technological online groups related to their diseases. Apart from this, there are also online social environments where there are articles that will guide and guide individuals in their lives. Some of the patients do not participate in these groups because they will feel bad with the anxiety that will arise from the increase of fear and anxiety. 

“Because I have a panic attack, I didn't want to investigate too much. I don't want to research or know because it causes anxiety in me”(Y.Ö., 48 years old, Bronchiectasis-COPD, Female, Married). 

“I don't agree with it, but you research the disease on the internet, it happens like this.. They depress you more. There are things that I have not lived, but people think that I will live. Then there is the morale. It's not good. I compare myself to people who have the same disease as me. If I'm worse than him, I'm depressed, but if I'm good, I'm motivated.” (N.B., 20 years old, Cystic Fibrosis, Female, Single). 

“I know them. I was already very curious, for example, now there is an analysis, I look at my system to see what it means, I am very curious. Now they don't know, they confuse them. Look, most people are unconscious.” (T.A., 39 years old, Interstitial Lung Diseases, Male, Married). 

“Of course I know. I'm on Facebook, I'm in those groups. Some are very good, but I think some are very bad. For example, I requested this portable oxygen device from an association and they sent it to me right away. I shared it in the group, I said, "Look, I wanted it, they gave it to me for free, if you need it, ask for it." 8 people liked my post, one of them shared it because my father died, he had lung disease, 150 people liked it and many comments. I don't understand why people want to see negative things more. I get angry at such things. A deceased relative shared his medicines, so that if anyone has the same disease, they should take it and use it. Does such a thing happen? Will that medicine work for him? Is it possible to use the forehead without asking the doctor? It confuses some people. Some are helpful, but I get angry at such things.” (S.M., age 51, COPD, Male, Single).

The 51-year-old participant in the study stated that the majority of the postings of the transplant candidates were negative, causing confusion and anxiety in the other candidates. It is important to share that the portable oxygen cylinder can be given free of charge in order to benefit other candidates. Medical devices provided by the state and other institutions and organizations can be considered as a formal support system. It can be said that individuals with lung disease and respiratory distress need formal support systems in order to procure medical devices in this process.

Unlike those who do not want to join the lung disease network, there are individuals who want to benefit from such social interactions and want to expand their network. It is observed that these people are particularly beneficial to increase their knowledge about the disease. In this sense, in these networks, which are expected to turn into a mutually beneficial relationship, individuals will be able to participate in online helping and informing processes.

Less Affected by the Pandemic Period

Participants in the research often stated that the restriction and social isolation process experienced in the Covid-19 pandemic was not a different process for them, and that they were experiencing this process before the Covid-19 pandemic due to their chronic diseases. At the same time, some of the patients stated that they were not afraid of catching Covid-19 because they experienced some of the symptoms of Covid-19 due to their existing diseases. Some of the patients stated that they had Covid-19 but did not realize their symptoms because they thought it was the effect of their own disease. 

“The pandemic hasn't changed so much. I was living the same life again. I couldn't go out again, I was going through the same things again. I already have the same symptoms, so I'm not afraid. I can't get out. Even if there is no pandemic, I can't go out." (K.A, age 51, COPD, Male, Married). 

“I was not impressed at all.. I was already suffering so much. I mean, I never even thought of it. I was very sick, I was swollen, I could not breathe because of my lung disease. I couldn't walk inside the house. I couldn't even meet my own needs, I always lived with the help of someone. To the toilet, to put on my clothes, to take a bath... I was getting up, I couldn't move forward. They were taking my arm and taking me like that. 7-8 months passed like this. That process was already so difficult for me that I never thought about corona or something. There was no one coming and going anyway, everyone had withdrawn into their own shell. I always prayed, oh my God, please let me breathe, please let me stop coughing for a while. These were my only problems.”(Y.Ö., 48 years old, Bronchiectasis-COPD, Female, Married).

“I can say that the pandemic period did not affect my life much. Because I was always at home before the pandemic period.”(A.A., 18 years old, Pulmonary Hypertension, Female).

“Even if it wasn't for the pandemic, I couldn't have done much different. Because my disease is now advanced” (Ö.E., 41 years old, Pulmonary Hypertension, Female, Single).

The 41-year-old female participant in the study also said, “It is a thought that will sound very interesting to you, perhaps very selfish. For example, can you imagine, everyone started to live the life that I would normally live. Everyone is wearing masks now, everyone is at home now… everyone is a sedentary life… Well, it felt partly good, I can't lie. It didn't happen this time. It was something like society came to me. Whatever you put in the name of it, but there is such a thing. So, I didn't actually feel happy.” He stated that the isolation process experienced by the society during the pandemic process made him feel partially good, he felt separated from the society during the disease process, but he did not feel that way because everyone experienced similar things during the Covid-19 process.

Similarly, an 18-year-old female participant stated that other students, like her, could not attend school because the education continued online during the pandemic process, and that everyone experienced what she experienced before the pandemic. 

"I could not go to school. We were always at home. That's why it wasn't too much of a problem as everyone continued remotely. Everyone lived where I lived. I wasn't going to school because I was sick. No one could go.” (Ç.A., 18, Cystic Fibrosis- Bronchiectasis, Female, Single).

Physical Dependence During Chronic Illness

Chronic diseases can limit people's daily activities and make them dependent on someone else to meet their basic needs and self-care needs. This situation may cause limitation of mobility, difficulties in meeting their needs, and becoming dependent on the physical support of another person together with medical devices such as oxygen cylinders due to reasons such as shortness of breath and decreased oxygen in the lung patients included in the study. 

“My wife was always supportive everywhere. He washes my head, my food sometimes… I can't prepare my food, he prepares my food and brings it. I get up 2-3 times a night to look at it and get choked up. He turns on my oxygen machine, gives me water. He brings me and drives me, he has a license. I can drive sometimes too, but not that much. I feel very sorry for my wife, she is very tired. I would have done it too, I would have done more, but I say he should not do it. Things happen when people think about it… Sometimes it happens, I don't leave the room for 10 days. For example, I was in the hospital for 18 days last year. I've never been out. People shrink a lot. I also feel sorry for my wife, and I refuse the treatment because I feel sorry for her. I'm not getting better, but what can I do?" (C.M., 48 years, Bronchiectasis, Male, Married).

The 48-year-old male participant stated that he was physically dependent on his wife in many areas of his life, that his wife supported him in meeting his self-care needs such as taking a shower, and this situation upset him greatly. Transfer candidate. "I'm not getting better, but what can I do?" expression shows that his belief that his illness will get better is weak. 

“I want to work again, I want to earn money. My son is looking after us, thank God, but I don't want to be a burden to him. I want to marry her too." (K.A, age 51, COPD, Male, Married).

In disasters, the elderly, children, the poor, women, the disabled and chronic patients are known as vulnerable groups and risky groups.

Disasters that start and end suddenly, such as earthquakes and tsunamis, and disasters that start slowly and last long, such as drought and pandemic, have different support needs [19].

In sudden-onset disasters, housing and utilities are often disrupted. They cause a lot of injury and death in a short time. The types of support associated with such disasters also consist of basic needs such as search and rescue, medical rescue, evacuation, shelter, food. Slow-onset and prolonged disasters often affect larger areas and more people. In these disasters, basic needs should be supported for a longer period of time. In long-term disasters, besides basic needs, bio-psycho-social and economic support should be planned [19].

The Covid-19 pandemic has caused approximately five and a half deaths to date (WHO Coronavirus (COVID-19) Dashboard).

According to the CDC, cancer, chronic kidney disease, chronic liver disease, chronic lung disease, dementia, other neurological conditions, type or type 2 diabetes, Down syndrome, heart diseases, HIV, other immunocompromised conditions, mental health diseases, overweight, obesity, pregnancy, sickle cell disease, thalassemia, smoking, solid organ transplantations, stroke, cerebrovascular disease, substance use and tuberculosis are risk for Covid-19 (People with Certain Medical Conditions).

Those with chronic lung disease often spend their lives at home, have difficulty in meeting their self-care and personal needs, and become dependent on someone else's attention and care, due to the restriction of their mobility and increased respiratory distress in the later stages of their disease.

Individuals with chronic lung disease during the Covid-19 process have been more restricted during the pandemic process than during the disease process in order to protect themselves from the negative effects of the epidemic in this uncertainty environment.

In the Covid-19 pandemic, patients with chronic diseases, including those over the age of 65, did not go to crowded areas as much as possible and remained isolated at home. Social support systems to support the bio (disease follow-up and drug support), psycho (spiritual support) and social (food, beverage and need support) needs of elderly and chronic patients who are isolated at home during the Covid-19 pandemic have gained even more importance during the pandemic.

Social support systems are offered formally and informally. It is claimed that up to 80% of all long-term care is provided by informal caregivers. The definition of informal support provider includes not only the spouses, children and other family members of the patient, but also friends, neighbors who provide free assistance, and volunteers who provide assistance without any professional or formal contract [20].

Informal support systems are always used more than formal support systems in disasters. Formal social support systems, which are actively serving, especially in the Covid-19 pandemic, cannot allocate enough time for patients who are isolated in their homes. In these processes, informal support providers fill the gap.

The COVID-19 pandemic has increased reliance on home care in an unprecedented way.

It has been used as a pillar of the healthcare system to support people who have confirmed COVID-19 but do not require or are suspected of requiring hospitalization. However, the physical, mental and social well-being of home care providers has been ignored [21].

However, informal health support providers do not feel adequately prepared for disasters. For this reason, it has been emphasized that special studies and strategies should be developed for caregivers who provide informal health and support services [22].

Bio-psycho-social supports for patients cause them to go through the disease process better and less mental problems.

Studies have shown greater psychological distress among adults who had less social support during Covid-19 [23], while perceived social support was associated with lower anxiety, depressive and sleep disturbances during the coronavirus pandemic [24].

According to a survey conducted in 23 European countries (including Israel) during the COVID-19 period, in the first wave of the epidemic, older adults in European countries received more informal assistance than formal assistance. During the Covid-19 pandemic, a significant proportion of older adults stated that they received more support from their children, neighbors, friends or colleagues [20].

There are very few studies in the literature on Covid-19 and lung transplantation. In a study examining a total of 168 reports and website references, lung transplant recipients with COVID-19 were reported to be at risk of serious illness and death. In addition, it has been emphasized that the number of patients with chronic respiratory failure after COVID-19 and referred for lung transplantation will increase in the near future [25].

In a study on transplantation management with a total of 78 lung transplantation centers from 15 countries during the Covid-19 pandemic, a decrease in activity was reported in 81% and limited transplantation was performed only for emergencies in 47%. In this study, sixteen centers reported death in patients on the waiting list, and eight centers performed lung transplantation for Covid-19 disease. In the study, 62% of centers diagnosed Covid-19 in lung transplant recipients, most of whom were not severe cases [26].

In our study, the decrease in the number of transplantations in our country as well as in the world has increased the anxiety of transplantation candidates. 

There is no study in the literature about the bio-psycho-social problems and social support systems experienced by patients awaiting lung transplantation during Covid-19 pandemic.

In this qualitative study, the importance of social support systems was evaluated with 21 lung patients on the waiting list for lung transplantation during the Covid-19 pandemic. It is the first study to investigate the bio-psycho-social and economic problems of patients awaiting lung transplantation during the Covid-19 pandemic and the contribution of social support systems for these patients.

In our study, all of the candidates stated that the family is a very important structure from their informal support system. The majority of them stated that they would have difficulty in maintaining their lives without their families or that they would not be able to cope with their chronic diseases.

In our study, some of the patients stated that they were caught in the Covid-19 epidemic during this period when they were lung transplant candidates.

Some of the patients approached the pandemic process with an understanding of fatalism. They thought that the chronic disease and the Covid-19 epidemic were caused by the will and approval of the creator.

In our study, some patients experienced fear of death due to the presence of a chronic disease during the pandemic process. This fear has been more frequent in the early stages of the pandemic process. They cited the lack of information and information as the reason for this.

Transplant candidates think that they will not be able to cope with the disease if they are caught in the Covid-19 epidemic due to a chronic disease. Expressing his emotional state as "my job is done" after hearing the news of the epidemic with learned helplessness, the candidate said that he thought there was nothing he could do against the disease and that he could not cope with this epidemic.

While there are transfer candidates who have lost their jobs during the chronic illness process, there are also transplant candidates who have to leave their jobs voluntarily in order to be protected from the negative effects of the pandemic due to chronic illness. Loss of income may require economic support of individuals who do not have any other income other than the income they lost. Economic support can be provided through both formal and informal support systems. Transfer candidates received the most important support from their families and close circles during the period when they experienced loss of income. In addition, the state provides economic support to people with disabilities, such as disability pension and disability care salary. Individuals with chronic diseases also benefited from these economic supports within the scope of chronic disability.During these periods when they lost their jobs due to chronic lung diseases, their need for economic support increased even more. With the addition of the covid-19 epidemic, they could not leave the house and could not work in any job.

In this process, it is important to inform patients about formal and informal social support systems and to carry out studies to benefit them. However, comprehensive formal support systems should be developed for survivors who do not have families or other relatives. In fact, in all disasters, victims are faced with small or large-scale bio-psycho-social and economic problems. While most disasters occur in a short time, their effects pass in a short time. However, the bio-psycho-social and economic effects of long-lasting disasters such as the Covid-19 pandemic on people may also last longer (several years). Long-term and comprehensive formal and informal support systems should be developed for disasters such as pandemics.

During the Covid-19 pandemic, the bio-psycho-social problems of chronic lung patients awaiting a lung transplant have increased even more. As in all disasters, informal support systems were more easily accessed and preferred than formal support systems in the Covid-19 pandemic. A special social support program should be developed for families of chronic patients and transplant candidates. Formal and informal support systems in disasters should be handled together and more comprehensive scientific, educational and legal studies should be carried out.

Limitations

This study was carried out with the opinions of 21 lung transplant candidates who were placed on the lung transplant waiting list after their examinations at SBU Koşuyolu Yüksek İhtisas Training and Research Hospital.

Conflict of Interest

The authors declare no conflict of interest regarding this work.

Financial Support

The authors declare that they have received no financial support for this study.

Contribution of the Authors

The authors contributed jointly to the making of this study.

Ethical Approval

All authors declared that they comply with the rules of Research and Publication Ethics. For this study, approval was obtained from the ethics committee of SBU Koşuyolu Yüksek İhtisas Training and Research Hospital on 16.11.2021 with the protocol code 558.

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