Our final thematic map included five overarching themes. The richness of the results makes it difficult to show all of them in one manuscript without the risk of losing layers of meaning; hence, we decided to divide them into two groups and present them in two distinct but connected articles. In this paper, we include the overarching themes of (1) patient (self)care, a functional element of the hospital system in COVID-19, and (2) ingenuity and resilience, solutions for individuals in the healthcare system (Fig. 1.). The remaining three overarching themes encompass the broader context: the details about the state of the healthcare system and the characteristics of the crisis that appeared in the interviews.
Overarching themes: A, B; Themes: A.1, A.2, B.1, B.2, B.3; Subthemes: A.1.1, A.1.2., A.2.1, A.2.2, B.1.1, B.1.2, B.3.1, B.3.2, B.3.3
A. Patient (self)care: a functional element of the hospital system in COVID-19
This overarching theme (located on the left side of the thematic map, marked with “A”) shows how those infected with COVID-19 and their family members adopt behaviours necessary for the hospital’s daily operation, thus forming an integral part of the care system. It consists of two individual themes: a forced, or at least not voluntary, role transformation of patients assisting themselves and solving issues alone (A.1 The self-managing patient) and patients supporting each other or their relatives becoming the primary source of help (A.2 Patients and their relatives as hospital caregivers), both of which have two subthemes to capture their content in detail.
A.1 The self-managing patient
A.1.1 Coping by becoming an (experiential) expert
Before and during their hospitalisation, some patients engaged deeply in treatment and recovery processes. They learned about medicines and methods, and this knowledge was shared in the interviews as a core element of their experiences. The following excerpts are typical examples, as the participants explained the name, form, and quantity of the treatment received.
“In the first days, I will not be able to pronounce its name very well, but it is faripiravil [Favipiravir] or what is the name of this drug that you are supposed to take when you are at the very beginning of the infection because then it can still help effectively.” (006)
“… and after that came the medicine called Remdesivir, well, with a quasi-infusion, I received five units of it, for five days and […] they added oxygen, two units, four units, eight units, and from then on I can say that the condition improved, my condition.” (012)
The quotes also show the patients’ attention to medical details. Medical terminology often appeared in their speech, such as “I received an oxygen mask so-called fifty” (006), “My basic saturation was 96–98, and it dropped to 91–92 when I almost fainted” (012), or “I also had a problem with D-dimer” (G102). They collected information through the media, such as Participant 006, who talked about Favipiravir as “according to some doctors, it is only good for destroying your liver a little.”
Hearing the health staff communicate or even ask them directly was another source of knowledge, as in this participant's narrative: “The doctors said that I actually did a paramedic course with them there in the three weeks because I always asked everything, what the instruments were for, what value they should show, etc.” (021).
While this first subtheme focuses on the acquired expert role as a form of patient self-management, the second presents its different layers and manifestations.
A.1.2 Self-management spectrum: behavioural, material, informational
Most of our participants experienced a lack of medical resources during their time in hospitals. While some reacted to the difficulties of care with acceptance and acquiescence, such as “Hats off because they truly did everything” (G203) or “It is an absolutely positive experience” (G204), many began to look for solutions.
The following example is from a man who needed constant support in breathing due to the severity of his illness; however, “…the oxygen ran out at two in the morning, and there was no [oxygen] until five; it was unfortunate, but I solved it in such a crafty way that I always went to another ward and joined [the oxygen of] an empty bed there.” (012)
In other cases, the participants did not behave under the patient role by regularly managing their infusion treatment “because I knew what was on my medical record” (018) or felt the need to “fight to have a bed like this [electrically controlled one]” (021).
Another layer of self-sufficiency was the privately financed assets necessary for recovery. When a hospital ran out of paper bed trays, “… we solved it somehow. It can be obtained; you can buy it on eBay, so we bought it for ourselves”, Participant 021 recalled.
Due to the scarcity of treatment information, people started to check data through the client interface of the central healthcare information system. According to Participant 001, “… we were able to monitor that the residents were asking questions, the symptoms were being sent to the Cloud, and then an experienced doctor would respond, make a diagnosis […]. Therefore, I got more information [through the internet] than in the hospital.”
In other cases, relatives had to be involved in keeping the patients informed: “…she looked at my findings because I had a lot of labs, everything, and she always kept me informed,” Participant 016 said about her friend.
Self-managing in the daily routine was not the only unusual consequence of the hospital crisis. The following theme draws attention to the role of hospitalised patients and their relatives in caregiving.
A.2 Patients and relatives as hospital caregivers
A.2.1 The necessity of the relatives’ support
The isolation measures used in hospitals appeared in almost all our interviews. Connection with the staff became challenging, and lacking this essential human contact made communication with relatives even more critical. As in the following excerpt of a young female participant, “I have three sisters, and all of them took turns writing to me and constantly reinforced in me that “a few days and you will get over it”.” (017)
It often happened that the hospitalised patient's family members were also sick, only at home. This required mutual support; as Participant 005 said, “… we talked a lot on the phone. Sometimes I was down on one side, sometimes they were down on the other side, and then we helped each other mentally”.
In addition to emotional support, the role of relatives also became salient in physical care when essential equipment began to run out in hospitals, such as the thermometer provided by the wife of Participant 001 or this quote regarding hygiene assets: “... it was a bit too much that there is no toilet paper in the toilet, you have to bring it yourself, and if it runs out, that is it.” (005)
Providing homemade food for family members in hospitals is a common way of expressing support, and relatives even provide support through strict pandemic regulations. Participant 019 said, “My mom cooked, and then every day, my partner tried to bring me food, right, in a food box that kept it warm”.
The first subtheme captured the physical and emotional care that relatives could and had to provide for their hospitalised family members. In the next chapter, we will see the same pattern emerging among the patients within the hospital wards.
A.2.2 Physical care and emotional support from fellow patients
As a result of isolation measures and heavy staff overload, the only present and accessible connection for patients was their roommates. There were instances when patients in better condition at that time had to provide physical care to each other. In the following quote, a young male participant describes his experience of becoming an assistant to others.
“An old man who turned out not to be that old was brought to the other bed; he just neglected himself, and then he had to be cleaned from time to time because the nurses did not come in. They only got dressed [in protective suits] twice daily, so if anyone did anything stupid, we had to fix it. Actually, I was distracted by caring for my fellow patients.” (002)
The tension in the comment “he just neglected himself” suggested that not everyone was comfortable with the caregiver’s role, even if they felt it was natural to help.
At the same time, others had an exceptionally positive experience with physical assistance, such as Participants 013 and 019, who both took care of their immobile elderly roommates. They said, “I organised the aunties when the assistants were not there” and “…then I gave her a drink because […] during those four hours, the nurse could not come in.”
Participant 018 recalled the same experience from the opposite perspective, being the one who required help. The excerpt shows the episode when the older fellow patient had to assist his younger roommate: “I was lucky that a 67-year-old uncle was lying next to me, who was in better condition than me, and he took care of me, changed my bed tray, and if I was very sick, called the nurse.”
In addition to physical care, many participants recalled the formation of temporary friendships through shared difficulties (becoming “patient-friends”, 012) and emotional communion with fellow patients as an element of support and healing. “What was created between the patients was also very good; it helped a lot, and we talked a lot”, Participant 018 said. At the same time, Participant G101 noted that they “tried to release the stress there in the room between each other” due to the lack of professional emotional help.
Finally, in the following quote, the specific peer effect of support is highlighted:
“… She [the roommate] said, “I was the same as you; I received the same strong medicines, the same infusion.” It helped me by knowing that it was not just happening to me.” (017)
This overarching theme reveals how many ways patients and their relatives have become active participants in health care during the pandemic.
B. Ingenuity and resilience: solutions for individuals in the healthcare system
The second overarching theme (located on the right side of the thematic map, marked with “B”) captures how, during the time spent in the hospital, signs of resiliency and resourceful behaviour began to appear due to the anomalies of the health system overload. It comprises three themes: patients had to stand up for themselves to get care or, on the contrary, to avoid the stress of being cared for (B.1 Tricks to access care and avoid stress); navigating in the public health system proved to be easier with preliminary information (B.2 Role of system-specific knowledge); and in the absence of the abovementioned two, various mental processes were initiated to find an explanation for the events occurring, thereby addressing the feeling of vulnerability (B.3 Cognitive processes to gain control over helplessness). The first and third themes also have subthemes for better data structure.
B.1 Tricks to access care and avoid stress
B.1.1 Network and status to access care/information
In the interviews, specific experiences refer to an anomaly in the Hungarian healthcare system. There were cases when the possibility of hospitalisation or the quality of care depended on the individuals’ social networks or personal contacts, not purely on the degree of need. The following quote reveals that the interviewee was only hospitalised because of his boss’s intervention: “[he] insisted that he would definitely get a [hospital] place for me, and then he found this clinic. Therefore, I am very grateful to those who arranged for me to be admitted because it was already full everywhere then.” (001)
Inequality did not only affect hospitalisation. The ambulance did not want to check on Participant 018 until, by chance, “they asked if I [by name] was the one we were talking about. I had been the dispatcher’s teacher earlier, which is why an ambulance came for me.”
Patients’ sense of security also depended on whether they had an even distant acquaintance working in the hospital ward, such as “a nurse, some kind of acquaintance of my daughter-in-law’s mother... does not matter; there was a person I can at least speak” (019), or “The wives of my husband’s colleagues are nurses who worked in that department, so they were even more attentive to me” (G103).
However, privileges appeared most visibly in the interview 016, recorded with a COVID-19-infected health worker. She received help from her network of nurse friends to acquire information about her state because “I asked the doctors in vain, they did not answer” or to obtain a unique asset for lung training “with special permission from the head of the department”. She also recalled the nurses’ reaction to her HCW status: "Oh, we did not know that you are also a health worker; we will take care of you better now”.
This first subtheme highlights different privileges essential for accessing care in severely saturated health systems, while the next subtheme focuses on patients’ assertivity.
B.1.2 Noncompliance to cope with circumstances
Our interviews revealed examples of firm behaviour when patients had to act decisively or contradict the staff to reduce or eliminate the stress or insecurity they experienced. Some of these are related to COVID-19 measures, such as “it is not okay to lock the door on the patients for the night” (019) or the following excerpt about being tested in every phase of hospital admission and finally refusing it: “[...] Then, in the morning, a gentleman doctor appeared again, he also brought his little stick, and I told him: thank you very much, I do not want it anymore” (014).
In contrast, other experiences reflect the lack of qualified personnel. Participant 016, after 14 unsuccessful needle insertion attempts, said to the nurse, “Don’t be angry with me, but it will not work for us, let it go”; therefore, she did not receive the needed infusion at the end.
Finally, resistance was also a reaction to certain hospital conditions. In the admission phase, Participant 017 was rejected due to overload. “I started laughing and said that I can’t go home; that is for sure, it is 3 AM.” Others admitted to the ward were fighting hygienic conditions: “The shower was so disgusting after so many people... I could not go into that common shower. However when they asked me if I was showered, I said yes, but I was not.” (019).
These two subthemes capture various ways of receiving proper care without experiencing unpleasant experiences. The following theme highlights the importance of being adequately informed.
B.2 Role of system-specific knowledge
We have already seen how connections can foster navigation in the health system. Patients’ preliminary information—acquired during previous hospital stays and heard from family members and acquaintances—also determined their attitude toward treatment.
Participant 019 recalled her reaction to being relocated to a particular hospital unit infamous in the media for its care issues: “Then, I told the doctor I would not go there. I said I would go home then. At my own risk, I do not care. And then they saw that I was completely determined, and the doctor said I could stay at the neurology department, which was the COVID department at the time.”
Preliminary knowledge was complemented by the insider’s perspective of those who worked in any healthcare field. Participant 016 recalled specific staff approaches in different hospital units, saying, “… my former colleagues are there; therefore, I know that it [the care] varies from floor to floor, and the patient whom we are fighting for is placed on the floor with experienced staff, and there is the floor with the deployed staff, and that is the “will be what will be” floor.”
Participant 001's underlying knowledge even caused a conflict, as he disagreed with his treatment as one of the pharmaceutical developers of Remdesivir. “And then they said I would not get it […] because it was for serious cases. I said no, just the opposite; it is not for serious cases. Therefore, I was more aware of this than the staff,” he recalled.
In this separate theme, unique expertise emerges towards the health system, typical of healthcare workers but also noticeable among laypeople. Moving to the last theme, we present the cognitive strategies for reducing vulnerability revealed in the interviews.
B.3 Cognitive processes to gain control over helplessness
B.3.1 Normalising care dysfunctions
Most of the participants we interviewed showed empathy and compliance when they experienced health system overload; for example, Participant 019 said, “I absolutely understand this; it was not only me but many who were sick, and there were very few nurses”, or “the nursing staff did their best to make it work, but they were few” (G101).
Interestingly, this sympathy persisted for many, even when their interests were damaged, as when Participant 009 recalled a series of unsuccessful needle insertions from the nurse as “it was more like funny, and also understandable”, or in the following example: “sometimes we had to “hunt” for the nurses to assist us, but this level of vulnerability was still pretty okay for me” (006).
Another reaction to care shortages was to develop alternative explanations. When the nurse call system did not work, Participant 002 thought, “It was switched off, in my opinion, but it could also be due to the previous renovation”. When there were only nurses but no doctors in the ward to talk to, “I was reassured that this is how it goes and that everyone’s symptoms and diagnosis are well described and that this is how it works, so I calmed down” (001).
The crisis made the participants more empathetic to the health system, sometimes even at the expense of their interests. A similar phenomenon can be seen regarding the attitudes of healthcare workers.
B.3.2 Explaining staff behaviour
The interviews criticised the staff’s behaviour and showed empathy for their overwork. Unfortunately, the interviewees reported some severe cases of negligence in primary care, such as “[the nurses] forgot to give me water, so my mouth was full of wounds” (G201) or “I felt freezing, I asked for a blanket, […] they said I should stand it, we will be finished [with the X-ray] in two minutes anyway” (G203).
The following quote best illustrates patients’ vulnerability while hospitalised.
“In the evening, a nurse came in; it all happened in minus four degrees, slammed out the big window […] and left it open all night. I could not move; I could only wrap my head around with my towel (breaking voice) because it was close to me […] I was very, very cold, and no one, no one came.” (G202)
In addition to these unfortunate extremities, the most common complaints were connected to the deployment of health staff. While the need for adequately trained medical personnel increased drastically due to the pandemic, nurses and doctors with little or completely different professional experience had to be mobilised to care for those infected with the coronavirus to maintain the daily operation of the health system. In many cases, there were not enough doctors: “I saw a doctor when I was examined in the ER, and next time seven days later in the ward” (G103), or a psychiatrist had to lead the pulmonology department, as Participant 016 recalled.
Nevertheless, at the same time, the participants tried to reduce the resulting vulnerability with specific interpretations: “…well, not all of them [the nurses] could take blood properly, but at least they admitted it” (011), or to avoid feeling it: “… when it was truly important and necessary, we banged on the door like monkeys in the zoo [...] and the first reaction was “Go back immediately!” […] Of course, this is also understandable on some level.” (002)
Participant 018 summarised the controversy of this subtheme as follows: “I would evaluate, let us say, an outrageous, unprofessional behaviour from a nurse or a doctor differently... if I also see the system.”
Finally, in the last subtheme, a tendency appeared to look for explanations and use observation regarding the circumstances.
B.3.3 Speculations about the operation of the hospital
The operational characteristics of the hospital structured the time the participants spent hospitalising. Thus, interpreting it and looking for explanations appear in many interviews. The following excerpt answers, “What was a day like in the hospital?” were used:
“How a day was dependent on who was on duty, […] how many were on duty, and how many were in a life-threatening condition. Or how many dead people had to be taken away.” (018)
Others made detailed observations, such as Participant 016, who talked about the drug allocation process: “Outside in the green zone is the drug allocation into boxes. Nurses in the green zone do not know what changes happened to the patient. Maybe, if the situation is lucky, someone in the red zone will call out on the walkie-talkie to the green zone, “You should put this or that in [for the patient] because she needs it”.” (016)
Finally, hearsay also played a role in understanding hospital mechanisms since, in isolation, there was no information about it: “They did not admit, but I think there was always an older nurse with the young and inexperienced ones to help them” (019) or “there was a given timeframe, when COVID-19 patients could go to certain examinations, at least that is what we heard, and we did not hear a lot in there” (005).