Our analysis suggested that most of the GPs we interviewed perceived self-care as being solely related to health, but some GPs found that it related to all other aspects of the patient’s life. The GPs’ assessments of patients’ self-care ability were based on knowledge obtained through the ongoing doctor-patient relationship. In their assessments, GPs identified four major factors: multimorbidity, cognitive resources, material resources, and social context. Each one of these factors contributed to limiting patients’ capacity to take care of themselves, either permanently or for a period of time. Some patients struggled with challenges from two, three, or even all four of them.
Self-care – limited to health or including all aspects of the patient’s life
Most of the GPs perceived self-care as the patients’ ability to take care of their health and these GPs identified three successive prerequisites of patients’ self-care ability: 1) recognizing a health problem and viewing it in the context of the total life situation; 2) giving priority to the health problem and willingness to spend time and effort on adapting life to the health problem; 3) carrying out and adhering to the adaptations made to address the health problem.
Self-care is the patient’s ability to look after the disease. A good ability of self-care is to be able to understand what the disease is about and how to relate to it. But especially to be able to carry through changes and do what is necessary. Having diabetes, it’s about exercising and eating healthy and managing the medical check-ups and the medications (GP 5).
A substantial minority of GPs also defined self-care as belonging to more domains of a patient’s life; health related self-care is only part of the ability to take care of oneself. Other aspects for patients were to recognize, prioritize, and take proper measure of their total life situation in order to make disease and its treatment fit into daily life, including, for example, social networks and work life. Self-care was also seen as a proactive approach to solving the challenges in life, where a positive outlook could be very helpful. One GP connected self-care to self-appraisal: does the patient appreciate himself or herself enough to make the effort to care for his or her health?
To be able to take care of some of the things, that we (as GPs) want people to take care of, it is very important that you think you have a good life and experience a good quality of life. Then, I think, that you feel more in control and want to hold on to the good life by taking care of yourself (GP 8).
Some of the GPs could not describe the meaning of self-care, but one GP stated that he was confident that an unspoken awareness of self-care played a role when he considered the patient’s ability to follow a complicated medical treatment like injection of insulin.
GPs’ evaluation of self-care ability and the ongoing doctor-patient relationship
The GPs got most of their knowledge of a patient’s self-care ability from their ongoing relationship with the patient. They knew patterns from earlier disease trajectories, current adherence to medications or appointments, and the patient’s reaction to advice on lifestyle changes, such as weight loss or cessation of smoking. In smaller communities, some GPs had knowledge of the patient’s everyday life in the community.
When you have known people for so many years then you really do not need to ask very much about self-care, because you know their work situation, who they are married to, their children and all these things. I really do not sit writing if they manage one or another thing (GP 4).
The GPs were reluctant to assess self-care ability at the first meeting with patients they did not already know and waited for later meetings to get a better assessment from the patients’ questions and their feedback on changes in lifestyle. However, even with new patients, GPs observed signs of self-care ability.
I attach importance to how they move, their size, and how worn-out they look. And how they express themselves. It is just like this; if you are not too smart, then it can be difficult, and you might get a sense of that from the conversation (GP 2).
Major factors influencing the ability of self-care
According to the GPs, the ability of self-care could vary over time due to changes in both health and life circumstances. A number of factors affected self-care – in both negative and positive ways over time, as illustrated below.
You can say that it (the self-care ability) fluctuates: I had a patient here, who didn’t monitor her diabetes for two years. I think it was because her marriage had failed and she had gotten divorced. Then she met a new man and things changed. She started exercising and began to take her insulin again (GP 3).
However, the most important factors influencing a patient’s self-care ability, according to the GPs in this study were: multimorbidity, cognitive resources, material resources, and social context.
Multimorbidity
In the GPs’ experience, one condition could act as a barrier to self-care of another disease. If a patient with diabetes had respiratory problems from a lung disease, it could be difficult to exercise as much as the GP recommended.
She is simply very obese… and then her back is so bad, that she has to take a lot of painkillers as well, so she has such pain in her body, and it results in a total absence of exercise… I think that she hardly can walk from the waiting room to the next room with a walker. She is really in a bad position because of her weight and her pain (GP 1).
The presence of a high number of concurrent chronic conditions could even block the attention of both the GP and the patient to some of the diseases.
I believe this patient has seven chronic conditions, really significant diseases, and one day we realized that we had not discussed his severe COPD for four years. Because he has diabetes, atrial fibrillation, rheumatoid artritis and ... I am not able to remember all of them, but the COPD was completely forgotten (GP 3).
Some of the GPs found that patients with limited personal resources were less inclined to overcome the barriers of disease. One GP described an unemployed patient with diabetes who seemed to focus on the pain from arthrosis in her knees instead of finding alternative ways to exercise. Another GP also experienced patients who were not able to by-pass physical limitations in order to exercise more.
Yes I do (talk to the patient about his lack of exercise), and then of course he says like the previous patient: ‘I just can’t walk, because I have pain in my back’. He likes to go fishing and he thinks that he gets much exercise from that, although his boat is small, so that’s not much. Of course, he lives his life as he thinks it should be lived. I have talked much to him about walking or biking or swimming, but no (GP 2).
Patients with a combination of somatic and severe psychiatric disorders or abuse of alcohol had particular difficulties. For example, one GP had a patient with diabetes and an anxiety disorder who could not participate in the lay-led diabetes program. In the GPs’ opinion, somatic conditions could not be treated unless the alcohol abuse or psychiatric disorder were well under control. Self-care related to somatic treatment could fluctuate depending on how the patient was responding to treatment for psychiatric disorders and substance abuse.
In his case, as soon as his psychiatric disorder is well treated and he does not drink alcohol, he actually has a decent ability of self-care. He is average clever; he has just always had a psychiatric disorder. Thus, he understands that he has to take care of his diabetes … (GP 6).
Cognitive resources
Most of the GPs had experience of patients with limited educational attainment through either lowered intellectual capacity or from mental stress or dementia. The GPs found that self-care ability in these patients was lower because they often had additional social problems, had unhealthy habits, or were unable to change their lifestyles.
A limited knowledge and understanding of the nature of the disease and the body could lead to misunderstandings between the patient and the GP about the management of chronic conditions. The GP repeated the same advice to patients who easily lost the overview and focused on less relevant aspects of self-care. Therefore, the GP’s ambitions for treatment could be lowered. The GPs perceived that some of these patients who had no disease symptoms, for example from early stage diabetes, did not take the disease seriously or even neglected it.
It’s not that easy to… explain things to her… If we discuss a healthy diet: do you eat any vegetables? Yes, I eat one tomato a day. Therefore, she is really in a completely different space than she should be in terms of just about everything (GP 1).
Material resources
Some patients’ residential conditions were so miserable that they directly affected disease. In the case illustrated below, this frustrated the GP:
When his damned asthma is not bad, when it is not season for his asthma, then the diabetes and everything works fine. His current problem is that (his home has) a very bad indoor climate that worsens his asthma. That is what turns him over again and again… he might be admitted to the hospital two times in three months (GP 4).
Many patients with low income could not afford the expenses of transportation, medication, or additional treatments with a limited co-payment. In the setting of our study, many of the patients lived in rural areas with long distances to travel to the GP or to sport facilities and with no opportunity for public transport.
The finances play a very great role… Because if you have three chronic conditions, despite the maximal governmental grants, then there is a co-payment of 50 Euros per month. It can be too much for them, and then they will not buy the medications, they simply cannot afford the medications… I have certainly some examples of that (GP 12).
Social context
The GPs found that social context could enhance or limit the ability of self-care. Dietary habits had a great influence on many diseases but were difficult to change if the spouse, or person responsible for cooking in the household, was not supportive.
A man with an alcohol use disorder, who lives alone, is often a bit more difficult to reach than others are. But then again, men with wives, who are incapable of adjusting their eating habits, these men can almost be even more difficult to treat. Social circumstance plays a major role in self-care (GP 2).
Problems in the patient’s close relationships, like divorce or serious disease in a partner or child, could also disturb the ability of self-care fundamentally for a period of time, or permanently.
I told her, that her numbers (blood glucose) had worsened. Then she said by herself: ‘Yes, but it is about my (child), who is ill and has just been admitted to the hospital’. Then I said: ‘but yes, I understand’. That is just the advantage of knowing the family... I know their life stories, so I can easily see the whole picture (GP 12).
Other problems in the patients’ social context might drain the resources needed to change lifestyle. Sometimes GPs had to accept that due to the patients’ social contexts, self-care ability was not sufficiently present to follow the guideline treatments for some diseases.
If you have problems at work, you clearly have more prominent and important challenges than changing your lifestyle and exercising. Obviously, if you hardly can manage your everyday, you simply have no extra energy. You just need to be in control with the basic stuff before you are able to care for yourself in terms of life style changes (GP 11).