What this study adds
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Support in primary care practices is mainly medical self-management support, whereas patients wished for more emotional support.
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Including a social medical service in municipality or combining social events and medical lectures could address challenges of elderly patients.
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Cooperation between primary care practices and social initiatives may activate elderly people.
Background
Methods
Study design
Study setting
Sampling and recruitment
Data collection
Questions for patients | Questions for practitioners |
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Current status - Perception of self-management | |
a. How do you get involved in decisions around your diseases/health? | a. How do patients get involved in decisions about their diseases/health? |
b. What do you do to improve/maintain your health (at home)? | b. How do patients manage their multiple conditions from your perspective? |
Current status – Self-management Support | |
d1. How does your primary care practice support you regarding self-management of your diseases? | d. How do you support patients with multimorbidity in your practice? |
d2. How does your primary care practice motivate you to do improve/maintain your health? | b1. How do you motivate patients for self-management? b2. How do you motivate patients to participate in patient training programmes? |
Challenges | |
c. What disease is most stressful to you? Do you also get more involved within this disease? | c. How do you think patients perceive their disease? Is one disease in the foreground? |
What problems do/did you face in the context of your disease? Is there anything that would make it easier for you to cope with your situation? | Which problems do patients with multimorbidity often have to handle? |
Further support | |
e. What further support would you like to receive regarding self-management of your chronic conditions? | e. Which further support possibilities for people with multimorbidity do you know? Which support do you would wish for your patients? |
f. Is there anything else concerning your self-management you want to tell me? | f. Is there anything else concerning the self-management of patients with multimorbidity you want to tell me? |
Data analysis
Ethics approval and consent to participate
Results
Demography
Patient | Age | Gender | Casmin Level | Income | Marital Status | Residence |
---|---|---|---|---|---|---|
1 | 79 | Male | 1 | Between 1500 and 2000 € | Divorced | rural |
2 | 83 | Male | 3 | Between 2000 and 2500 € | Widowed | rural |
3 | 78 | Male | 1 | Between 3500 and 4000 € | Married | urban |
4 | 75 | Male | 1 | Between 3000 and 3500 € | Married | urban |
5 | 78 | Female | 2 | Between 2000 and 2500 € | Widowed | rural |
6 | 66 | Female | 1 | Between 1500 and 2000 € | Married | rural |
7 | 66 | Female | 2 | Between 4000 and 5000 € | Single | rural |
8 | 89 | Male | 2 | Between 2500 and 3000 € | Widowed | urban |
9 | 68 | Female | 2 | Between 350 and 4000 € | Divorced | urban |
10 | 85 | Female | 2 | Between 1100 and 1300 € | Widowed | rural |
11 | 79 | Female | 1 | Between 1500 and 2000 € | Widowed | rural |
12 | 82 | Male | 3 | Between 4000 and 5000 € | Married | rural |
13 | 72 | Male | 2 | Between 3500 and 4000 € | Married | rural |
14 | 70 | Female | 1 | Between 2000 and 2500 € | Widowed | urban |
15 | 78 | Female | 2 | Cannot tell | Widowed | rural |
16 | 84 | Female | 1 | Between 1500 and 2000 € | Divorced | urban |
17 | 70 | Female | 3 | Between 3000 and 3500 € | Divorced | urban |
Practitioner | Role | Age | Gender | Number of years qualified |
---|---|---|---|---|
1 | Practice Assistant, VERAH (Care Assistants in General Practice (Versorgungsassistentin in der Hausarztpraxis, VERAH)) | 55 | Female | 40 |
2 | Practice Assistant, VERAH | 43 | Female | 11 |
3 | Practice Assistant, Case Manager | 46 | Female | 26 |
4 | Primary care physician | 49 | Female | 19 |
5 | Primary care physician | 63 | Male | 23 |
6 | Primary care physician | 59 | Female | 14 |
7 | Primary care physician | 58 | Female | 27 |
Overview
Theme | Category | Subcategory |
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Current status | Self-management tasks | Nutrition/ Diet |
Training | ||
Medication | ||
Information/ Keeping up-to date | ||
Social exchange | ||
Responsibility | ||
Coping with multimorbidity | ||
Self-management support | Motivation | |
Recommendations | ||
Exchange with physicians and practice assistants | ||
Rehabilitation services | ||
Organisational aspects | ||
Challenges | Multimorbidity and its challenges | Pain |
Loneliness/ lack of social networks | ||
Loss of independence | ||
Changing habits/ lifestyle change | ||
Treatment burden | ||
Mobility restrictions | ||
Being a burden for family/friends | ||
Challenges for practitioners | Allocation of time and resources | |
Strategies for motivation | ||
Further support | Concerns expressed from patients | Support for specific problems |
Support for general problems | ||
Concerns expressed from practitioners | Public transport | |
Support of relatives | ||
Government support | ||
Social medicine |
Current status – what do patients do for their health, which support is available in primary care practices
Almost all patients saw themselves responsible for their own health, but at the same time they articulated how important it was to trust and keep in touch with their primary care physicians.“I live more or less alone and I would like actually then when I do something, I want to do it in company, that's why I'm looking for all the courses. I also do as I said yoga and, in the gym, you also get to know new commonalities with any other people, you can talk, there you want, yes, also a bit of social contact!” (Patient 9)
Furthermore, most patients felt that they were coping well with their diseases and tried to integrate medical advices into their life. There were differences in the time spent dealing with the disease. Some said that it is best not to think about the disease too often whereas others focused and align their lives according to the diseases.“I don't need motivation, I'll do it myself! You see... I say to myself, ”This is my life so I have to do something about it!“ No? I should move around and do the other... That's just the way life is, isn't it?” (Patient 12)
“I live my life and try to listen to medical advices regarding what I need to do that I can be a... A... I'll say live an acceptable life. So, no runaways! But with me there were outliers, no doubt, but today I live according to the medical guidelines! But not spartan! Everything in a reasonable, compatible measure.” (Patient 8)
They said that they can talk and ask their physicians and practice teams what they want and discuss for example issues that are not necessarily disease-related such as loneliness, stress or anxiety. Recommendations were often not implemented on a regular basis. Most patients knew that the recommendations could help but apply them only in the case of pain or symptomatic deterioration.“I am already [motivated] by my primary care doctor. He says when something is not right. He doesn't mince his words.” (Patient 1)
Rehabilitation services in specialised in-patient clinics with offers of e.g. physiotherapy or occupational therapy were perceived as very helpful by the patients. They learn much about which training or which diet fits best to their diseases, especially at the onset of the disease. Whereas patient education was only visited by two participating patients and was not mentioned by the patients when asking for self-management support. However, some patients explained that they visit a rehabilitation at their own charge regularly.“Yes, well, I mean, if I... I also had breast cancer, so I still go to cancer follow-up care, I go regularly do cancer screening and still go every quarter of a year. I also insist on not going every six months or yearly to follow-up care and they all know me well. (…) And if I have a question or if something is wrong, then I talk about it briefly, then I get an appropriate answer and then it's good. So if there's something I can't deal with, then I ask and that's enough for me.” (Patient 16)
Furthermore they declared how important participation in decision-making reagarding medical care with their primary care physician is.“I was in a rehabilitation for six weeks and learned a lot of helpful things there about how to deal with..., so initially I had a lot of problems getting my everyday life going again, because when you have two-thirds of your lungs removed, it's a bit of a difficiult, I'll say that now.” (Patient 9)
Practitioners reported that they stay in regular contact with their patients with multimorbidity. Support in primary care practices is available mainly via consultations, telephone calls and regular check-ups.“Of course, it is also important that I know where I have to go, to which doctor. And I have the advantage with my primary care doctor that I can also discuss this with him. And that I also get the referrals to the specialists from him. That works relatively well. Of course, he also has my data in the computer and can see exactly what is good for me. That is a big advantage and I can take advantage of it.” (Patient 5 )
The practice assistants highlighted that they support patients also in organizational aspects like filling out an application for e.g., a rehabilitation.“Yes, in principle, essentially through offers, conversations... Proactive questions and offers to talk about problems and find a solution together. So, the patients are very different, some would not say anything of their own, you have to be proactive.” (Physician 1)
Practitioners articulated that it is crucial to address patients’ needs and concerns. However, adhering to the needs-based recommendations as well as participation depends on the individual patient. Just like the patients, practitioners told that in case of pain patients are highly motivated to be involved in their care.“Yes, often the patients come when they have been approved for medical rehabilitation, then they have several pages, they have to fill out themselves. Often, I fill it out together with them, because often the questions are not understood at all, because they are written in a different language that some patients really do not understand, especially in the medical nomenclature.” (Practice assistant 2)
“It always depends on the... On the individual patient, one is more motivated and the other a bit less... You often get into conversation when you take blood samples, you know the patients for some years and then you find out a little bit, the sensitivity how to motivate one or the other a little bit.... Yes, to motivate them by getting into conversation with them.” (Practice asisstant 2)
Challenges that patients and practitioners face
When participants were inquired about the challenges they face or experience with multimorbidity, patients talked about various aspects like loneliness, loss of independence, changing habits as well as handling pain and treatment/ disease burden.“Yes, well, it's the pain that weighs on me the most, the consequences of what can still come of it, I have to say honestly, I don't think too much about that now, I just try to move and I think to drag the whole thing out.” (Patient 7)
Practitioners also perceived various challenges of their patients with multimorbidity. Most practitioners indicated problems of mobility restrictions due to limited mobility or lack of public transport. If there are no ancestors or reference persons, this problem as well as social support and organizational supports is exacerbated.“I used to work in the [social institution] and now I'm a pensioner and if I don't go out myself, it's sometimes hard for me to be here alone in my half of the house. So I need the strength, the spiritual strength to go out and I also need that to keep myself mobile and I hope that will last a little longer. That I can continue to be mobile a little bit.” (Patient 5)
In addition, some patients do not want to be a burden for their family and friends or for their physician and their practice team.“They usually travel by public transport and are on the road for hours. I have a patient who told me that it actually took 4 hours to get from the university clinic to the eye clinic, from back and there... Return journey and outward journey, right? 4 hours is an enormous burden for an almost 80-year-old woman during the day.” (Practice assistant 2)
Another problem for patients with multimorbidity perceived by the practitioners are aspects of lifestyle changes like changing of diet, quieting smoking or doing sports to cope with the diseases.“There are patients who express themselves little and also tell little about their problems, it is simply not to be a burden to others.” (Practice assistant 2)
An wide ranging problem from the point of view of practitioners is the lack of a social network with friends or family, which affects many elderly people. This exacerbates the problems described above.“A change of diet is of course very difficult - everyone knows that... Quitting smoking is also very, very difficult. But we always try to reflect this in the patient, that he is his own therapist, that we only support him with medication and so on, he actually has to lead his own life and must, for example, somehow find a form of exercise that he enjoys, yes?” (Physician 4)
“I think it depends on the personality of the people, how they have otherwise managed themselves in life and of course also in the social context, for example having a very good network of relatives and so on, that is of course also a difference to those who are single, but there it is also very different.” (Physician 1)
“I also often ask myself how much of what we talk about here.... And I really take a lot of time and like to listen for a long time and try to explain certain contexts but how much ultimately sticks or is taken away, yes? Because they then present themselves again a few months later and we have the same topic on the table again as it was before, without anything having been changed in part, yes? [...] I mean, we make every effort, we are open to everything, but it is difficult, yes? It's really a difficult undertaking!” (Physician 2)
Need for further support
“Yes, it would actually be good if rehabilitation could take place regularly every four or five years for some chronic diseases, such as fibromyalgia, even if it is only an outpatient rehabilitation. That would do a lot of good. If it were simply normal that you could do it every few years.” (Patient 14)
On the other hand, patients expressed concerns regarding general problems and challenges occurring in multimorbidity and old age. They wished for support and consultation regarding stress or coordination and organisation in difficult times as well as more exchange at the beginning of the disease. Moreover, patients wished for consultation of additional offers or things they can do at home.“Yes, bladder weakness, how to deal with it. I wonder if there's anything newer. Several people probably have it and maybe that's it, I don't know. Nobody can help me with that, it's just all that... this bladder weakness is already ugly.” (Patient 15)
“Yes, precisely the age-appropriate thing. Movement, age, being alone. These are the factors that I have to deal with.” (Patient 5)
“So, what possibilities there will be, what you could do in addition.” (Patient 6)
Another aspect practitioners raised was the support of the relatives. At the beginning of a disease the management is often difficult for the patient and his/her relatives. More and specific information about what is needed to care for the patient at home could benefit both. The basic idea that the patient and his/her environment should be involved in the chronic disease and its care should be promoted.“Yes, so what comes to my mind spontaneously is actually to improve mobility somehow, that is, through more driving services or however you do it, because that is often a hurdle. And then also for people for financial reasons or something. I mean, sure, if you can afford it, you can take a taxi, but it's just not the case that they can or want to do that... And then it is often difficult. Because it is often a cost issue. And then, of course, depending on the pension office, you can apply for some kind of handicap, degree of severe handicap and characteristic mark, which is often a bit cumbersome, because it also requires some teamwork, so it's a bit more complicated and complex, I would sometimes like it to be a bit easier, that you can simply issue it for old people... A taxi voucher, regardless of whether they have a special sign or not, if you need it for any necessary journeys, of course.” (Physician 1)
Furthermore, practitioners wished for more government support like taxes on sugar, more offers in giving up smoking and more sport programmes in companies and schools. General things which could help preventing chronic diseases. In addition, practitioners explained that chronic disease should be uncoupled from debt and connected to more positive impulses. One example was the connection of lectures and patient education with a joint meal whereas people can meet each other. This could be an event for elderly people to contact others and learn something about the management of their diseases in a casual atmosphere.“I just see the problem that self-management has to be learned first. To know, “Where do I start?” I would very much like the younger ones, the children, the daughters, the sons, to be the first to (be involved). So many things could be done if the children were not overwhelmed with the situation of their parents, because they have too much by themselves. They could do a lot more at home, I would say, in their familiar environment, independently, if they were better informed. ” (Practice assistant 3)
One physician suggested the need of more interest in social medicine in the daily work of primary care and in communities. The wishes mentioned are in line with this topic.“When I think of my mother, who lives in a village with 1400 inhabitants, if the old people's meal were to take place, let's say, in the community centre and they had to go there every day at noon, that would be much better for the old people than the Malteser or whoever else sheds a Styrofoam box in front of their door. And they would have to walk there and eat there and then you can have a coffee and then you go home again and then it’s a non-binding social contact where you also happen to have eaten. And then you can attach to such a contact, for example, a little lecture on “How much cheese should I eat if I have high fats.“. ” (Physician 3)
“The essential topic is a topic in which we are not trained, that we do not get paid for and that we still have to take care of every day, and that is social medicine. So how do people manage their lives and has anyone ever asked about that. Now, in the Corona telephone survey, we have gained more insight into the patient's everyday life than usual, because if he cannot come to us and we telephone him in his home environment, so to speak, then we can also ask: You live on the third floor, how do you actually get up and down, who did the shopping for you, who cleans, who makes sure that you take your medication regularly? You know, we are then confronted with the derailment, the relatives who say that everything is not working out at all and who is organising it now and that is not my job at all, I am not paid for it and it is not my job to organise it but it ends up with me, because I say it now because the state is not doing its job. Every municipality should have a social medical service where relatives can turn to when it no longer works with the medication, when it no longer works with the cooking, when it no longer works with the cleaning. And there are almost always medical reasons why it doesn't work anymore.” (Physician 3)