Data analysis resulted in the development of an association between provision of information to patients with PND regarding their diagnosis and health status, and their adaptation to the disease. The category “making a diagnosis” was determined as a causal condition for qualitative analysis, leading to the aspect of “adaptation to disease”, whose interventional condition was “sufficient/insufficient information”. Coping strategies and interactions were “a way of coming to terms with the disease” (the use of coping strategies, denial, searching for alternative treatments, etc.), resulting in either “coming to terms with the disease” or “not coming to terms with the disease.” Patients’ quality of life (Figure 2) was selected as the central category. The basic analytical narrative was formulated as follows: adaptation to disease is a process that is significantly related to how patients with PND experience quality of life. It is conditioned by having sufficient information about the disease, and the use of coping strategies.
At the time of diagnosis, and throughout the course of the disease, some patients received adequate information, while others did not. Although is sometimes difficult to diagnose a PD or MS above a level of suspicion and in case of clinical diagnoses it takes (necessarily) time, lack of information is for patient problem. Lack of information led to patient denial of the disease, or to feelings of uncertainty and distrust of doctors. Patients often resorted to searching for information on the Internet or in self-help groups. Those who received adequate information, either from a doctor or from their own research, were able to apply coping strategies and come to terms with the disease, or looked for treatment alternatives. Some patients entered the denial phase or experienced hopelessness, and were unable to come to terms with their disease. Patients who denied the reality of their disease did not wish to plan their future or even consider it. The way the patients coped with the disease affected their quality of life.
The results in each category are described below.
Making the diagnosis
Being diagnosed with a serious chronic disease is always a turning point in the life of a patient. Some patients learnt of their disease immediately. However, others had to undergo various repetitive examinations before receiving a correct diagnosis from their doctor.
For some patients, there was even a change in the diagnosis: “Last year I was diagnosed with something completely different. They just did not know what was wrong with me.” (P3).
Family members reported that doctors from non-specialized health facilities showed a lack of knowledge: “We had the problem that the doctor did not make the correct diagnosis. He did not point out the problem and cooperate with us ... he was dealing with something else, not with the main thing.” (FM6).
Lack of information about the disease
Patients and family members often did not receive adequate information either at the time of diagnosis or at later stages of the disease. Few participants were satisfied with the amount of information provided.
Several participants reported that doctors did not give them any information about the disease: “They did not tell me anything at all.” (P5). Patients informed of their disease only by medical report were dissatisfied: “A doctor who writes a diagnosis and does not tell me what it actually means… He would not even have told me…if I hadn’t read it in the report ... I think it's inadequate… they should have explained it to me and told me what to expect.” (P1).
Doctors and other healthcare professionals spoke about the difficulty of giving patients their diagnosis, and informing them about the disease and prognosis at different stages. While doctors find it difficult to give patients such a diagnosis and further unwelcome news that accompanies it, at the same time, they are aware of the consequences of not doing so: “It's natural - no one wants to be a prophet and give the worst news. And, moreover, to do so on a daily basis ... but on the other hand, if the patients do not know it, they will never be able to accept it.” (MD2). Other healthcare professionals had similar opinions: “If we can’t stand bad news, or we can’t give it, how can we be supportive?” (N3).
It is particularly problematic when necessary to inform patients or their family members that their health status has deteriorated, or that s/he has progressed to an advanced stage of the disease that is incurable: “First, we do not even know when to say it. Yeah, we feel it a little bit, but every doctor is different. You don’t learn this at school .... Today, there’s a belief that medicine can cure all diseases, and that doctors prolong life.” (MD4). Healthcare professionals do not often communicate openly with patients, and are not aware of the kind of information patients would like to receive: “This is exactly what we healthcare professionals often can’t do. We can’t even ask the patient about what they really want to hear.” (MD3).
Some patients could not talk openly about their disease with their family, or about the follow-up support they required, because they had not been given sufficient information about the disease: “We haven´t talked about it yet. Because I only know what I read on the Internet.” (P2).
Lack of information often made patients feel insecure and begin searching for information for themselves. They felt a distrust of doctors who did not provide adequate information: “The doctor doesn´t know … they don´t have enough information about it ... I´ve seen it a hundred times. ... They should be at least a little aware of what it [the disease] means.” (P11). Some patients lost all respect for doctors: “When I was being discharged, the doctor told me I´d be able to walk again by this time, and it´s not like that. I was foolish to think that he, being a doctor, knew what he was talking about. He didn´t.” (P7).Furthermore, general practitioners may not have sufficient experience of neurological diseases: “The GP practically does not know what the disease is like. He said he had no experience of it, and he doesn´t know how the disease will progress.” (FM4).
Patients feel insecure not only when they do not have adequate information about the disease, but also when they meet other patients with the same disease: “We’re waiting in the waiting room all together. I meet patients, who are much younger than me, and I can see that it [the disease] has such a rapid progression.” (P4).
Some patients even reported that their doctor advised them not to look for information about the disease: “Doctors tell you not to read it, right? But when they don’t tell you anything, what should we do?” (P10).
Some patients later received information, for example, from another doctor rather than the one who had first diagnosed and treated them: “It was the doctor here [in rehabilitation] who suggested that it would get worse. My husband wasn’t told anything either [crying]. I think it’s wrong. Because I think we should know it.” (P9).
Some participants received information from friends: “Because we had, thanks to my niece, who is a neurologist in Prague, access to information that we’d otherwise never get.” (FM6). “When I don’t know anything, I'll ask my friend with MS or I’ll search for it on the Internet. No one in the hospital will tell me.” (P3).
Some participants were satisfied with the extent of the information provided: “When I ask the doctor about anything, he’ll answer every question for me. I don’t have a problem.” (P7). At least one patient positively evaluated communication with a doctor via the Internet. Patients also received the information they required through self-help groups. Some participants mentioned events organized by non-profit organizations, also attended by doctors, who could provide information in an informal setting.
Having sufficient knowledge about the disease enabled some participants to understand its severity: “We know for 100% that she has realized it from the beginning ... she knew she was going to die.” (FM4). Another patient reported: “Well, the doctor said it would be tough, that we should get ready, that it would be very hard.” (P8).
Some patients denied the reality of their disease, despite the information they had received. Although well informed about their illness, either by a doctor or through their own research, they were not willing to contemplate the future: “Well, we don’t want to hear it yet.” (P1).
In some cases, they did not wish to know about the severity of their health condition: “If I went to see a doctor and he would be telling me some options, I’d just want to hear the first one - that I’d get better…” (P3).
They sometimes hoped for a breakthrough in treatment in the future: “Two years ago, I was told that it would only get worse and worse. Yes, of course, doctors shouldn’t lie to a patient ... but also the neurologist knows that the brain is so unexplored that anything can change.” (P2).
Some said they did not want to attend self-help groups to avoid seeing how other patients´ health conditions had deteriorated: “I can’t go there ... When I see them, some are already in the wheelchair, almost everybody, and I know I’ll be in a wheelchair too ... Because I know that the guy I knew, he’d been walking and when I came back in a year, he was already in a wheelchair. He just couldn’t [walk] at all.” (P4), or how their relationships with others might deteriorate: “It’s sad because sometimes the course is very dramatic. Sometimes it ends with the breakup of families. Unfortunately, it isn’t always possible to cope with the psychological stress.” (P3). The participants found meeting people with the same illness as themselves traumatic: “I can see some patients that go there, and I am scared. I'm afraid. I'm afraid I'll end up like the others. I don’t want to. I’ll live my way as long as I can.” (P6).
The use of coping strategies
Distraction was mentioned as an effective coping strategy by participants: “What can I do? I have to take it as it is. Crying won’t help me ... When I don’t think about it, I don’t cry.” (P1). Work helped distract one patient from her condition: “I tutor kids at home, which helps me. Sometimes I feel like I'm tired or something ... I say to myself, I can’t cry, I can’t lie in bed.’ You have to do it for the kids’ sake - it’s not their fault.” (P7).
Patients also regarded social support and inclusion in society as effective coping strategies: “The younger son has given me a future. He said: ‘I paid for a newspaper subscription for you,’ so that I could be in touch with the world through the daily press. ‘And I paid for a season ticket for the theatre for you.’… I like the theatre … and I’m glad because it’s a chance to dress up nicely, to get myself in the right mood, and I was going to say that I’ll walk out the door, but I’m not going to walk, I’ll be in a wheelchair [crying slightly].” (P5). Friends also provide support for patients: “When I fell ill, there were two things that stopped it from getting worse so quickly. When I told my employer about the disease, he told me if I wanted to keep on working, he’d let me ... The second was that at the time I was also working as a youth sports instructor. When I talked to my colleagues, they told me they needed a referee, someone who’d help out… so I could keep on working.” (P2).
A positive approach to life was found to be another coping strategy. This was particularly highlighted by patients’ family members: “Her only stroke of luck, a huge stroke of luck, was that she was extremely positive. It (HD) has terrible, horrible stages, when you don’t know what it’ll do to you - despite all that she was positive.” (FM4). A similar experience is described by the wife of a patient with MS: “And mainly what keeps his pecker up is that my husband is really optimistic and a joker – such an attitude is something that helps.” (FM3). Other family members described their loved ones as fighters: “He’s a fighter, he does really want to fight,” (FM2), or as being patient: “He possesses a great personal characteristic, that he’s extremely patient. He’ll try to say something ten times, he’ll read a book and maybe it will take him five minutes to turn the page. I’d give up … but he’s patient.” (FM1).
One of the patients mentioned their faith in God: “... a belief in God is very important to me, and the sense that health isn´t the most important thing in life helps me.” (P2).
Search for treatment alternatives
A number of participants had tried alternative treatments, which, however, were described as unsuccessful: “The healer tried to unblock it somehow… You look for any way. However, we didn’t find anything that improved his health condition … and in two years his condition has got so much worse.” (FM5). Other family members also mentioned the search for alternative treatment options: “Of course, if you’re living with the person for nearly 50 years, you clutch at straws. Someone who was always healthy, who was never ill, never, and who was a great sportsman, so I was clutching at everything.” (FM2).
The severity of progressive disease led some patients to despair: “The muscles will gradually weaken, that is, I won’t be able to either talk or swallow, I won’t be able to do anything ... then I won’t be able to move at all. It’s no sort of future,” (P11), or to experience a sense of inferiority: “You feel like you’re inferior [crying]. You fall ill and you don’t even know why. Then you are no good to anyone anymore,” (P2); or psychological resignation: “A woman came in, was diagnosed with progressive disease, and she lay down, got dressed in black and waited to die.” (N2).
Coming to terms with the disease
Some patients reported that they had come to terms with the disease: “I take it as it is ... It’s clear to me that I won’t be able to walk anymore.” (P7). Another patient described it as a process: “When I compare it with the beginning, with those years when I could not understand it, and I kept on asking what caused the disease ... So I feel a little more satisfied now. Or I’ve come to terms with the disease.” (P5). A caregiver for a patient with HD revealed that the patient knew about the severity of their disease: “‘I’m going to die; I was given 10 years to live.’ So she knew it all the time until the end that she was going to die, that there is an end.” (FM4).
Not coming to terms with the disease
However, a number of participants had not come to terms with the disease: “In general, I’m bothered by the disease; I haven’t come to terms with it yet.” (P2). They do not often name their disease, but refer to it impersonally as “it”. One patient with MS expressed her wish to be healthy: “I’d like to be like a normal person, to get up in the morning, go to work.” (P1).
Some patients who had not come to terms with their disease had unrealistic expectations regarding it: “I expect that my health condition will improve.”, “I hope it [deterioration] won’t happen to me.” (P3). Some patients bargained with the disease: “I hope that I’ll go, if not skiing, so at least cross-country skiing [crying]. But I won´ t give up, I won’t.” (P6).
Family members had had similar experiences: “He’s trying; he’s incredibly diligent, he still believes that he’ll simply walk off the disease, anything. But he, poor thing, can’t even feed himself.” (FM1); as had healthcare professionals: “They often have unrealistic expectations, namely that a person falls ill and gets better.” (N1).
A number of participants have withdrawn from the future deterioration of their health condition, not wanting to think about it or plan for it. Patients described it as follows: “I don’t even want to admit these things.” (P1); “I think I don’t even want to see it.” (P10); “I can’t imagine it at all. Maybe I don’t want to.” (P9).
They prioritized the present: “I’m dealing with today. I’m really afraid to deal with tomorrow or the day after tomorrow.” (P9). They used this emphasis on the present as a defense mechanism: “I’ve started to deal only with today. I don’t think about what tomorrow will bring, because I could go mad from it. As his condition is getting worse … every month.” (P1). The process of withdrawal is clear in this description of communication between partners: “I didn’t talk about it with my husband. He told me not to worry about it, that it would turn out OK somehow.” (FM3).
Quality of life
Patients or their family members who have come to terms with the disease stated that patients can have good quality of life: “I think he has a relatively good quality life, in the circumstances.” (FM1); “The quality of life is relatively good, in the circumstances.” (P7). A caregiver for a patient with HD remembered pleasant moments during social activities: “She always loved to go there ... She was happy, she was laughing so much. Life was good for her at the time.” (FM4).
On the other hand, patients who had not come to terms with the disease described their quality of life negatively: “No future, no quality of life.” (P2).