The patients participating in this study were mostly men (87%) and had a mean age of 50.85±6.02 years. Approximately half of the participants (54%) had higher education. The mean duration of infection with COVID-19 was 7.57±5.15 days.
After identifying and reviewing the codes, they were categorized, based on their similarities, into 5 main categories and 15 sub-categories. The main categories obtained from this process are: “Access to desirable care and comfort services”, “Access to education and information from credible sources”, “Access to specialized care”, “Support-social needs”, and “Need for deep emotional interactions”. The descriptions of these categories and their sub-categories are presented in the following.
1. Access to desirable care and comfort services
This refers to the need of COVID-19 patients to receive quantitatively and qualitatively acceptable care from committed and skilled healthcare workers, to have sufficient access to protective equipment, to be provided with a safe and healthy physical space, and to be looked after in terms of basic needs. These sub-categories are further explained in the following.
A) Need to skilled and committed healthcare workers
The presence of a skilled and committed medical team is a key determinant of the efficacy of treatments and patient recovery. Access to specialized care provided in a committed manner, especially for diseases that do not have any definitive or approved treatment, can play a significant role in the prognosis of patients.
In this regard, Participant No. 1, (male, 61 years old) said:
“I cough for hours, but no one cares! They just give me oxygen. Shouldn’t a doctor come check me? When I tell the nurses, they say we’ll call the doctor, but your situation is normal”.
Having a sufficient number of health care workers is extremely important for making sure that all COVID-19 patients receive the necessary care for this disease. The presence of enough personnel to meet the treatment and care needs of patients is one of the essential requirements of sustained treatment.
In this regard, Participant No. 5 (male, 49 years old) stated:
“Our problem is that there is not enough manpower in the ward. In the last shift, the mother of one of the nurses died in this very same ward, so she left. My nurse, who already had 3 patients, now had to serve 4 patients; two of them were critically ill and were on respirator. The way it is, often, they don’t have enough time to look after all of us”.
B) Protective equipment
Since the commitment to cautionary protocols such as using masks, frequent hand washing, and other protective measures is essential for protecting healthy individuals and limiting transmission, access to modern and high-quality protection equipment for COVID-19 patients as well as healthcare workers is one of the important needs of these patients.
Regarding the need for appropriate equipment to control the disease and receive proper care, Participant No. 4 (female, 53 years old): said:
“When I ask for a mask, they don’t give me one, saying you must put on your oxygen mask. When I say, what I keep in front of my mouth when I want should go to the bathroom; they say we are short of masks…”
Also, Participant No. 2, (male, 52 years old) stated:
“There are many shortages. I cough all the time. They say that you should put on these oxygen mask 24 hours a day. When I say give me a mask to prevent spreading the virus. .... Nurses and staff say we don’t even have enough masks for ourselves!!!”
C) Safe and healthy physical space
Creating a well-ventilated environment with good air circulation is one of the ways to control the transmission of the disease. Access to such a safe and healthy space was another request of patients.
In this regard, Participant No. 5 (male, 49 years old) said:
“The ward doesn’t have proper ventilation. You can leave the terrace door open to allow the airflow through, like a corridor, but they don’t do this…”.
“A few days ago, some guys from health ministry sprayed the whole area, the beds, the floors, the tables, everything; but they didn’t return..., I think this should be repeated every day.”
Also, a participant in Focus Group 1 (male, 48 years old) stated:
“The recovery area is not suitable for hospitalization. We don’t have adequate lighting. The space is confined and everything is squeezed to each other. It is not well ventilated at all. It is very cold at night and doesn’t have enough oxygen during the day.”
Participant No. 4 in Focus Group 2 (Male, 51 years old) also said:
“I have a lumbar disc. It’s really hard for me to rest on these beds. It is a hard bed with a thin blanket. Also, the beds that don’t have side rails, so we may fall dawn at night...”
D) Unmet basic needs
COVID-19 changes the sense of taste and smell and significantly affects the appetite of the patients. Therefore, attention to basic needs is a preference for these patients. One of the common complaints made in the interviews was the lack of enough specialized attention to basic needs such as diet.
For example, Participant No. 3, (male, 37 years old) stated:
“Food quality is terrible; the foods they provide have nothing to do with the disease. The disease also makes it not easier to eat here.”
As patients overcome the acute condition of the disease and start to recover, their nutritional needs also increase, which is why it is recommended to provide more meals during the recovery period.
In this regard, Participant No.1 in Focus Group 2 (male, 32 years old) said:
“The hours of the meals are not good. For example, we have to stay hungry from 7 pm to 7 am. Instead of eating my entire dinner at once, I eat it slowly until 11. But we don’t have anything to heat food. So, if you want to wait a few hours, you will be eating cold food.”
Because of the long stay of patients and their isolated conditions, it is important to pay attention to their basic hygienic needs as well.
For example, Participant No. 4, (woman, 53 years old) stated:
“Bathrooms with proper appliances are very important for hygiene. Unfortunately, the space provided is not suitable for women.”
- Access to education and information from credible sources
This category refers to the need for patient education based on credible information about the disease and how it can be prevented, controlled, or treated and also the need to help patients make sense of the conflicting information that they may receive from different sources.
A) Need for education based on credible sources
Providing COVID-19 patients with up-to-date credible information, especially through physicians and nurses, and keeping them involved during hospitalization can prevent possible complications and facilitate recovery by enhancing self-care.
Regarding patients’ need for education, Participant No. 5 (male, 49 years old) stated:
“I wish there was a law forcing doctors or nurses to give a scientific explanation of our situation to our families so that they would not be subjected to such stress.”
B) Need to know how to make sense of conflicting information
Today, social media and networks play an important role in disseminating both reliable and unreliable information. Naturally, the dissemination of conflicting information through these networks and other web services can confuse patients.
For example, Participant No. 5 (male, 49 years old) said:
“Every day, false news from websites makes patients and their families even more confused. Every day, they introduce a new way to control or treat the virus, which later you find out is completely baseless. You really don’t know which is true and which is not.”
Or, participant No. 3 (male, 37 years old) stated:
“The way it is, we’re really confused, we don’t know which news is right and which is false, we can’t trust the internet.”
- Access to specialized care
One of the most important needs of patients with COVID-19 was to receive specialized care, that is, comprehensive care under unstable conditions, knowledge of the treatment process, and the constant presence of caregivers at the bedside. These three sub-categories are described below.
A) Need for care under unstable conditions
One of the confirmed features of COVID-19 is clinical instability and sudden changes in hemodynamic conditions, which make the patient dependent on extensive care.
In this regard, Participant No. 2, (male, 52 years old man) said:
“... Our situation is so bad that we don’t notice the passage of time. Nurses constantly get our blood pressure and temperature. Doctors constantly examine us. Sometimes I get physiotherapy. Our condition is constantly changing; the patients to my left and right side were good in the morning, both died on the same day…”
B) Need to know the treatment process
One of the demands of patients and their families was to keep being updated about their conditions. Since families are not allowed to visit their patients in medical wards, they are constantly anxious to know about the latest condition of their patients.
In this regard, a patient in Focus Group 1 (male, 21 years old) stated:
“My family members called the ward for several days in a row? The nurses were saying to them: your patient is like yesterday; he hasn’t changed at the moment. It’s important for the family to know about the patient’s medical condition.”
Also, Participant No. 5 (male, 49 years old) said:
“I’m not complaining about how these employees keep working in these difficult conditions, but I am not satisfied with the way doctors and nurses treat me. I don’t know anything about the course of my illness. The doctor who examines me should at least try to explain my condition”.
C) Need for the constant presence of caregivers at the bedside
The changing and critical conditions of some patients require close and continuous care and reexamination to assess how the disease is progressing or regressing.
For example, Participant No. 4 (female, 53 years old) said:
“… I don’t really understand the visit, because I don’t usually see a doctor come near my bed. I haven’t seen the doctor in these few days; they just write something on my file from afar and leave…”
Also, a patient in Focus Group 1 (male, 32 years old) stated:
“… In the morning, someone writes the name of a doctor and a nurse on the board above our head. Sometimes I ask something from an employee, even a nurse, they just say wait for your nurse to come.... my medicine has run out and the machine is sounding an alarm .... they say the new medicine will start once your own nurse is here....”
- Support-social needs
The sub-categories of support-social needs of COVID-19 patients were as follows: the financial burden of treatment, insurances’ poor coverage of costs, problems with returning to work, social assistance to reduce financial burden.
A) Financial burden of treatment
Since COVID-19 is an emerging and unknown disease and still does not have a definitive cure, the patients must receive multiple treatments simultaneously, and this substantially increases the financial burden of this condition.
In this regard, Participant No. 6 (nurse, 35 years old) said:
“There was no treatment protocol. Therapies were mostly experimental. Every day a new treatment was being recommended. One day, they were saying do this, the next day, they were saying now try this one. These things cost a lot.”
B) Insurances’ poor coverage of costs
The variety of treatments and drugs used on COVID-19 patients greatly increases the cost of treatments and services provided. Meanwhile, a number of drugs or treatment protocols are not covered by health insurance, imposing a great financial burden on patients.
Regarding the financial problems caused by poor insurance coverage, a patient in Focus Group 2, (female, 25 years old) said:
“We have a problem with hospital bills. Should I bear the pain of the disease or the pain of hospitalization cost? They gave my family a prescription, saying that the hospital doesn’t have the drugs, so you should get them from elsewhere. The prescription costs a lot, and we have to pay out of pocket. Well, I have health insurance, but why it isn’t covered by insurance? In this crona condition (referring to pandemic), should they send my family to fetch medicine?”
Also, Participant No. 2 in Focus Group 1 (male, 61 years old) stated:
“Fearing that their insurance will not cover them, many patients prefer to go home and risk getting their family infected, because they think it will cost a lot and they will not be able to handle it.”
C) Problems with returning to work
Returning to work after recovery was one of the concerns of patients, especially those with non-governmental jobs.
For example, Participant No. 3, (male, 37 years old) said:
“My main problem is my job; I am a worker; what should my family do financially? This brings me more anxiety than the disease itself. I am afraid of being fired by my employer.”
D) Social support to reduce financial pressure
COVID-19 has negatively affected Iran in many ways, but it has also generated a sensation that all Iranian have a common destiny and their wellbeing depends on the wellbeing of others.
In this regard, Participant No. 6 (nurse, 35 years old) stated:
“Many patients have financial problems, but there is a sense of empathy that has caused people to help patients by bringing food or even paying medical expenses.”
- Need for deep emotional interactions
One of the main elements of hospital care is to provide emotional support and peace of mind by establishing a good relationship with patients. One of the needs of COVID-19 patients was related to the lack of deep emotional interactions, which manifested in two sub-categories: challenges in establishing good relationships and a sense of empathy in a stressful and complex environment.
A) Challenges in establishing good relationships
One of the important determinants of the quality of care and consequently the outcome of treatment is whether there is a good relationship between health care workers and patients. This was also found to be an important need of COVID-19 patients.
In this regard, Participant No. 5 (male, 49 years old) said:
“Nurses keep their distance and don’t want to make any contact; despite that they wear space suites, masks, glasses, shield, gun, shoe cover, even have multi-layered gloves, and the patient is also masked. This is running from the patient; this means taking an emotional distance!!!”.
B) Sense of empathy in a stressful and complex environment
Empathy is an active effort to understand others and an emotional response to their situation. It is the ability to see things from another person’s point of view and to behave in a way that heals the suffering of others in acts that often involves courage and philanthropy based on socially acceptable behaviors. Empathy can be viewed as the opposite of being indifferent to others. Empathy is healing and improves patients’ physical and mental conditions.
In this regard, a participant in Focus Group 2 (female, 28 years old) said:
“…Working for and serving coronavirus patients, who carry millions of viruses, requires love. This should not become pure duty. The person must remain in love with the work…”
Also, a participant in Focus Group 1 (male, 36 years old) stated:
“…I enjoy how seminary students help out without any ego, it is very good. They just do their service lovingly. They try hard to make you comfortable, with pleasure. This is great in this situation; but they just come here for a few hours. I wish they were here all the time…”