Data analysis led to the formation of two categories: "Perception of disorder and crisis in the patient's life" and "Patient and family abandonment in the care knowledge gap" (Tables 3). The first theme indicates that heart patients suffer from mental and physical limitations and disabilities following the onset of complications Which is accompanied by various stresses such as fear of imminent death, fear of disability, feeling hopeless about the future, injuries and financial stress in the family, feeling of physical disability and despair caused by lost physical strength; that the association of limitations and disabilities with these stresses in patients create a feeling or face of crisis. So that patients understand and pay attention to heart disease with the same life-threatening and disruptive effects and pay attention to it. The second theme shows that a patient with heart disease, along with her family, is left in the community in terms of education and is not valued. The patient does not have a clear understanding of his illness and his family does not benefit from this education. It can be said that we are facing a patient who does not know anything about his illness and is not given proper education and has been completely forgotten and abandoned in the health system in terms of education (Tables 2 and 3).
Table 2 - An example of the formation of a subclass
|
Subclasses
|
Codes
|
Meaning Units
|
|
Feeling of physical disability
|
-Feeling of helplessness caused by disease in life (1)
-Impotence due to anxiety caused by the disease (5).
-Physical disability due to heart disease (9)
|
"These same daily chores, in the middle of the housework, my breath catches and my heart beats faster. I'm short of breath. This disease is always on me, Madam. I used to get up at dawn, but now I sleep until noon. Because I cannot work." (Participant 1).
"Because of heart disease, I'm afraid to have sex with my spouse, because I'm afraid my heart rate will go up and down once. That is why I prefer not to do it" (Participant 5).
|
Table No. 3 – The concept of” leaving the patient and family in the care knowledge gap”
|
Themes
|
classes
|
Subclasses
|
|
Abandonment of the patient and family in the care knowledge gap
|
Receiving insufficient patient knowledge of the disease
|
Lack of knowledge about the disease
|
|
Follow the wrong advice of others in self-care
|
|
-----------
|
Neglecting the education of family members in the health system
|
1- Understanding disorders and crises in the patient's life
This concept indicates that heart patients suffer from physical and mental limitations and disabilities following the onset of complications of the disease, which are accompanied by various stresses such as fear of imminent death, fear of disability, feeling of hopelessness for the future, Financial inability to meet family and medical needs, unmet expenses, loss of financial resources, feelings of physical disability and hopelessness due to lost physical strength; That the association of limitations and disabilities with these stresses in patients create a feeling or face of crisis. So that these patients understand and recognize heart disease with the same life-threatening and disruptive effects and pay attention to it. Characteristics of this concept include three sub-concepts: "inability to control daily life", "facing an ambiguous and worrying future", "injuries and financial tensions in the family".
Inability to control daily life
The physical limitations caused by the disease have caused the patient to lag behind in life in her body and to see the disease constantly present and watching over them. In this situation, patients who used to take care of their parents in any way or walk well to the store to buy anything are no longer able to do so despite this disease and this disease has made them feel powerless to manage their lives.
"These same daily chores, in the middle of the housework, my breath catches and my heart beats faster. I'm short of breath. This disease is always on me, ma’m. I used to get up at dawn, but now I sleep until noon, because I cannot work." (Participant1).
Also in this regard, when physical disorders occur, it causes the patient's ability to weaken and in turn causes the person to not be able to trust her body mentally. In this case, due to lack of self-confidence, he feels that he has been deprived of life and due to his heart disease, they are not able to express their discomfort in this area and they feel that somehow because they cannot do their previous work. They are not valuable and their grandeur is diminished and this leads to their isolation in society and they feel everyday life. Because they say that they only spend nights and days and they always feel useless and their life is on a straight line and it is not a process and one day it ends. Consider, for example, one of the participants' remarks about the diminished grandeur:
"When you have heart disease, it means you do not have the strength to do anything at all. You get tired quickly. Oh, I do not know if my body pulls or slows down in the middle of work. Well, at one time I was a jerk for myself "(participant 8).
Also, another participant describes the physical disability as follows:
"Because of heart disease, I'm afraid to have sex with my spouse, because I'm afraid my heart rate will go up and down once. That’s why I prefer not to do it" (Participant 5).
Facing an uncertain and worrying future
Patients are quite afraid of death itself, especially since these patients are often elderly and see death approaching due to very old age with illness, even these patients were very nervous because of the fear of death because they felt that with death, they lose all their possessions and have to say goodbye to life. For example:
"After all heart disease is scary. Do you know what will happen if it stops? These thoughts bother me. Whoever says that he is not afraid of death is lying. I am very afraid. I do not want to lose the result of my efforts."(Participant 6).
Sometimes participants are afraid of the side effects of heart interventions and believe that these interventions cause their disability, for example:
"I'm afraid they'll open my heart. Because I have diabetes and they want to take vessels from my legs. Well, what if my wound doesn't heal at all? Do I have to be overweight? How do I walk?" (Participant 5).
After suffering from this disease, these patients develop emotions such as despair, mental and psychological collapse, which these patients express with sentences such as: My condition will never get better, I have no future and no one can help me. Feelings of frustration often cause these patients to lose interest in important topics, activities, events, or people. One of the patients says in this regard:
"I have a feeling. You know, there is no fear. It is a kind of feeling of collapse and breakage. It is a kind of weakening. When you become ill, you just understand what I am saying. The disease itself shows you, for example, you want to climb 4 steps or you cannot do everything you want. I don't even like cooking anymore. I only calm down when I smoke a cigarette, which is temporary "(Participant 7).
Injuries and financial tensions in the family
Many patients cited low-income as a reason for not receiving guests at home and not traveling, and cited the cost of heart disease as exacerbating the disability. That is, they did not consider the disease to be a direct cause of their financial incapacity. For example, one patient says:
"I do not travel at all, because I do not have the money. I'm done sitting in a corner, I also make money, I have to spend on medicine, I can no longer travel, because my salary is really low. It costs money to travel. In addition to the ticket cost, you have to buy a lot of souvenirs, which also cost a lot. I do not know how much I get paid to spend. Even if I want to go to my son in Germany, I am only fresh for a few days and then I have to reach for my pocket. And then this boy sucks me to the end and then he leaves me (patient and researcher laughs) "(Participant 7).
Sometimes the amount of patients' salaries is enough for daily life, but it is not enough to treat the disease, and in fact, the costs of treating this disease have been able to impose a relatively large financial burden on the family. In other words, they considered heart disease as the cause of their financial inability to meet their medical needs. One patient describes the problem as follows:
"Because I have heart disease, I could not have surgery on my prostate (due to difficulty in regaining consciousness) and instead had to buy expensive drugs (ampoules of one million tomans) to solve the prostate problem, which imposed a heavy financial burden on me because I must inject one ampule a day for a month "(Participant 2).
Heart disease has numerous side costs, which unfortunately in many sections, the costs are not covered. For example, one patient says about the side costs of his disease:
"Every time I come from our city to Karaj and I am admitted to this hospital, unfortunately they do not pay us any fees. Of course, my husband and daughter sleep in the car so that they do not have to pay for the hotel, but it costs a lot anyway. For example, what would happen if the hospital fed the patient’s family and provided them a place to sleep? I remember once we came here for angiography, and I had to be hospitalized for two weeks, my wife needed a bath and finally she had to go to a motel, so she could take a shower. We pay all the money for gasoline, we come here and no one asks us at all where you get this money from” (participant 9).
Sometimes, in the face of medical expenses, the family is forced to sell some property, the compensation of which is impossible, which in fact shows the lack of improvement in the quality of life. For example, the daughter of patient number 9 says:
"My father had to sell one of our lands. Of course, they deceived him and gave him some money for the land, but thank God he was finally able to match the money for my mother's surgery" (Participant 16).
2- Leaving the patient and family in the care knowledge gap
This concept includes two sub-concepts called "insufficient knowledge of patients about the disease" and "neglect of family education in the health system".
Receiving insufficient patient knowledge of the disease
In fact, this sub-concept indicates the fact that patients in the health structure of society have been left alone in terms of education. Another patient attributed his lack of knowledge to the lack of training by the medical staff:
"They do not value a person at all. They do not ask how we are. What happened to my heart? What should I do? Just know the order of the body so that your sheets are flat and the chair next to the bed should not be tilted. They only do unnecessary things. They have to tell people, explain and tell the truth about our medicine. What should we do? "Unfortunately, in a minute, he says something and go, and they don't care at all whether I understand or not?" (Participant3).
Another patient attributes her ignorance to following her parents' words and states:
"Our parents used to tell us that the life is too short, how long do you want to live? Eat and enjoy your life" (Participant 1).
Following the wrong advice of others in self-care is another feature of receiving insufficient knowledge of the disease, which shows that most patients, due to the wrong advice of others, have done things that are very harmful to their health and make it worse. For example, one patient told us about his friend's advice:
"Ma'am, I went to do heavy exercise, I felt bad. Oh, my friend said that you should see Bodybuilders. What vessels do they have? If you exercise, your veins will open in the same way. And they will never close again. I regret that I listened to him, because I was eating TNG for a few days after that "(participant 10).
Another patient describes the reason for not understanding her illness as follows:
"When you see that the doctor and the nurse do not teach you, you have to gather information from everywhere. And it is not clear whether they are right or wrong. For example, when I asked the nurse and saw that the nurse did not give me the Convincing answer, I had to ask the patient’s companions next to me. Now it is not clear whether they are right or not" (Participant 11).
Others, regardless of the accuracy of the information, simply prefer to rely on the doctor's words because they trust their doctor.
"My own doctor told me to eat whatever I could, because life is short. I swear in God She herself told me so. I did not ask her why she was telling me that. I just obeyed" (Participant 7).
Neglect of educating family members in the health system
This feature indicates that the patient's family members are not educated and in fact family members who play an important role in caring for their patient, especially during the recovery of the disease, are in complete ignorance. In this regard, one of Patients says:
"When the doctor comes to visit, the nurse comes and throws my baby out of the room. Well, if she stays, she understands what the doctor is saying. Then The next day I go home, she can take better care of me. But unfortunately, I do not understand anything. Oh God, now my daughter does not know my medicine at all, because doctors or nurses do not have time to explain all the medications. They only give us a bad handwriting prescription that we have to wait to see what the pharmacy says so that I can take the medicine accordingly. By God, our intellect is better than these medical staffs "(Participant 12).
Or the sun of the patient number 3 says in this regard:
"Nurses also only stick to bed linen, which must be flat. Or, for example, if someone is not in the room, do they have a little understanding that these things are not useful to the patient? By God, I like so much to tell me what to do now. My father gets better. But nobody tells us anything. They only get stuck in things that are not worth it. Now what if the bedding is not smooth? What's wrong? The Quran is wrong? They are wasting our time. Instead of giving us a little training “(Participant15).
Participant girl number 8 also states in this regard:
“I am not illiterate. They all treat people in such a way that if we are illiterate we know nothing. Ask the nurse a question, for example, what is this medicine and what does it do? The nurse tells me, if you also know this, then what difference do you make with us? Please leave the room. We studied for 4 years to understand these things. Well, yes, you studied, I did not want to know everything, at least tell me a few about these medicines how to give to my father? When to give? You cannot understand many things from the Internet at all. We have to be told what to do. I'm in trouble” (Participant 14).
Or the wife of one of the patients explains the need to have a nurse specialist in the ward:
"Really, a woman should be a nurse here whose only job is to educate. Because the patient is sick, her/his brain is not working well either. So educating her/his is not right. We who are healthy can better understand what is what" (participant 13).