In total, 16 interviews with a patient-informal caregiver dyad were performed. The interviews lasted from 58 to 90 min. Although the interviews were conducted with patients in the presence of their informal caregivers, the results presented in this paper entirely focus on the patient’s experiences towards self-management support. Involving the informal caregivers helped patients in formulating their story and to feel at ease.
Characteristics of study participants
A total of 32 persons were interviewed, including 16 patients and 16 informal caregivers. Most patients were living together with their informal caregiver (11 out of 16 patients). The characteristics of the participants are summarized in Table 1.
Table 1
Characteristics of the participants
| Patients | Informal caregivers |
Gender Male Female | 5 11 | 7 9 |
Mean age | 67.5 | 66.8 |
Additional inclusion criteria Patients taking four or more different medications Patients demanding a higher need of care Patients of low socio-economic situation Patients estimated to have limited or low health literacy Patients tending to need more care according to at least one member of their primary care team | 11 6 3 3 2 | - - - - - |
Employment Employed Unemployed Unemployed due to disability Retired | 0 0 3 13 | 1 1 3 11 |
Structural analysis
The inductive content analysis of the interview data resulted in five main categories regarding the role of healthcare professionals in reinforcing patients’ self-management: supporting, involving, listening, coordinating, and questioning. The main categories are the result of breaking down the interview transcripts into meaning units, further condensed into multiple subcategories, and finally encapsulated into main categories (Table 2). In some cases, a subcategory applies to multiple main categories since the main categories are not strictly delineated and overlap slightly. Table 3 provides an overview of the main categories and subcategories. The categories exclusively focus on interactions between patients and their healthcare professionals.
The healthcare professional network consisted in many cases of the same key actors including a GP, a pharmacist, a home nurse, and a medical specialist related to a specific disease. Typically, the primary care professionals acted as the first and central point of contact for patients. Depending on patients’ case, other primary healthcare professionals were also involved like social workers, physiotherapists, speech therapists, members of the pain clinic, dietitian, etc. A patient with Parkinson’s disease, for example, would be additionally supported by a physiotherapist and a speech therapist. In a limited number of interviews, there was also guidance by a psychologist or psychiatrist. In the following section, the different categories are presented with examples of verbatim quotes.
Table 2
Example of the inductive content analysis
Meaning unit | Condensation | Subcategory | Main Category |
“She [GP] helped me… I can always go to visit her or call if I do not feel okay. Not for the prescription of my medications, but to meet for a talk.” (Patient – P4) | The doctor is both physically and by telephone accessible for not only the prescription of medication, but also for a listening ear. | Accessibility Understanding | Coordinating Listening |
“I have balance problems. If the physiotherapist comes at home, our first exercise is on it.” ... “We walk around. She stands behind me when she sees me shaking so she can quickly grab me.” (Patient – P2) | Treatment of the physiotherapist with supportive exercise (balance problems) | Practical support Formal support | Supporting |
“When I was first diagnosed, I had many questions. And I gave them to him [doctor].” … “That doctor just answered the questions he wanted to respond. And when the doctor’s appointment was over, I never received the answers on the questions, he did not likely formulate a response on. So yes, that was a mess ... and I did not feel good about it.” (Patient – P6) | Patient used to write the questions down before an appointment. The doctor just answered the questions he wanted to answer and then the appointment was over. Patient didn't feel good about it. | Dialogue Information | Questioning |
Table 3
Overview of subcategories and main categories resulting in an overall core category
Subcategory | Main category | Core category |
Practical support ADL support Physical support Household support Medical support Information exchange Clinical expertise Follow-up | Supporting | The role of healthcare professionals in self-management support |
Communication tools Shared decision-making Participation Cooperation Care continuity Freedom of choice | Involving |
Taking time Empathy Understanding Listening ear Dealing with help requests Emotional support Listening to questions Listening to expectations Listening to wishes and goals Listening to care barriers and facilitators | Listening |
Accessibility Care continuity Deliberation Stability Collaboration Time management Support network Teamwork Point of contact Follow-up | Coordinating |
Dialogue Information Questioning expectations Questioning experiences Questioning wishes and goals Questioning care barriers and facilitators | Questioning |
Supporting
Within our study context, we defined supporting as all elements supplied by a healthcare professional related to treatment, follow-up, and guidance. The participating patients indicated to be accompanied by a team of healthcare professionals. According to the interview data, the main actors involved in the active support were nurses, GPs, and physiotherapists. Their support was experienced as essential to fit the chronic condition into daily life. In essence, essential to self-manage the disease.
“For my care… I don’t think other persons are involved beside my physiotherapist,
the home nurse and my GP.” (patient)
Besides delivering physical care (e.g., diagnosis, treatment, symptom control), various other support elements came up in the interviews. More specifically, supporting was about actively guiding through the delivery of practical tools (e.g., a wheelchair), health-related information, medical assistance (e.g., medicines) and the set-up of home care. Home health care represented most of the support. The frequent visits by home care nurses ensured a better disease management.
And then in the evening, the physiotherapist comes to visit at home. And he provides exercises for my back and my neck and he applies a bandage with a tape.
… “It really helps me. He supports me well.” (patient)
“The purpose of the nursery is to make the physical condition as good as possible.
That goal has been realized.” (patient)
Involving
Involving was defined as working in (co-)partnership with patients. Participants described explicitly the wish to be involved in their care. Patients experienced feelings of respect and equality when being actively engaged in health care. It gave them a chance to participate in their own care and to self-manage their chronic condition. The involvement seemed to be mostly related to medical decision making. For example, patients longed for a freedom of choice related to medical treatment options. In addition, the wish was expressed to be involved in decisions concerning the support of daily life activities. Well-informed decisions did arise when there was room for open conversation and discussion. The extent to which patients wanted to be involved depended on the patient.
“If I have an appointment with D. [the doctor], he asks me if I want to try the proposed medicine or
if I prefer something else. So yes, I'm taking part in the decisions he makes.” (patient)
Moreover, patients strived for involvement throughout the entire care process. To overcome the pitfall of a provider-centred management, patients indicated empathy and understanding as essential components of good collaboration. The participants expressed the wish to share their concerns to feel comfortable in the care they receive.
“No, I make decisions together. Uh, for example… They have asked me a couple of times what I think about a DBS [Deep Brain Stimulation]. Uh, I am quite reluctant towards it
and therefore, I have made it clear to the doctor.” (patient)
Listening
Listening seemed one of the most talked-about components, defined as the act of giving an audience and paying attention to someone. Patients expected from their healthcare professionals to listen to what they need, what they want and to what they strive for. Only in this way patients felt supported to manage the chronic disease. In addition, the interviews emphasised the importance of encountering a professional with a listening ear to be able to express concerns. The interview participants pointed towards the home care nurse, a psychologist, or the GP as the ideally positioned sounding board.
“She [GP] helped me… I can always go to visit her or call if I do not feel okay.
Not for the prescription of my medications, but to meet for a talk.” (patient)
Listening to patients was defined as taking time and being into an accessible mindset. Furthermore, listening means patients felt heard. Participants clearly mentioned that plenty of opportunities can arise from open-minded interactions between care professionals and care receivers.
“You have the feeling that those doctors are making time for you. It's not that you walk in their practice and they immediately start looking at the clock… If the doctor comes here for a home visit, and he always comes here, he'll just sit down for half an hour, at least, and tell you all kind of things. He is also a nice person… and he listens to you and gives advice.” (patient)
The listening aspect was also mentioned in the interviews when talking about emergency situations. Patients were in need to contact their care professionals if they experienced problems. Dealing with help requests included active listening to all actors involved. The GP mostly acted as the central contact person in these cases.
Coordinating
Coordinating was defined as guiding responsibilities in the entire care process. According to the participants, coordinated care contributed to coping with their chronic condition, and consequently, to self-manage the chronic condition. Patients expected healthcare professionals to assume responsibility to keep the care network running. An effective follow-up was fundamental by means of coordination between the professionals.
Furthermore, patients expressed the importance of being able to make an appeal to their formal network. Again, the central connection was the patients’ GP.
“They work well together. P. [GP1] is the one who coordinates everything a bit. J. [GP2] has been away for a year because she had a baby. P. and J. used to come around. During the holidays we received a letter that someone is stepping in. They are all good doctors.
They coordinate with each other very well.” (patient)
According to the participants, the act of coordinating involves communication and discussion between different actors through the entire care process. Participants experienced benefits of information exchange since it guaranteed care continuity. In addition, coordinating included collaborating among the healthcare professionals with a focus on the chronically ill patient. This could be facilitated using digital tools (e.g., digital patient file, electronic health platforms). The interview conversations highlighted the significance of a well-functioning structured care system, in which effective and clear agreements are made. Finally, coordinating also meant that there was good overview of all care actors involved.
“Doctor X [GP1] and doctor Y [GP2], they come here for a home visit.
And they have their computers with them. They contain the entire patient file.
Everything is written inside that has happened. And if someone [one of the two central GPs] cannot come to us, there are always others doctors available.
You see, that’s how our doctors are here.” (patient)
Questioning
For the current analysis, we defined questioning as a type of communication giving raise to conversation by using interrogation. Patients expected the care professionals to ask them questions. Posing questions created a genuine momentum between care professionals and patients. It resulted in an interactive conversation about patient’s wishes, goals, and expectations. Furthermore, formulating questions to the patient initiated valuable conversations about the care process: what goes well and what could be improved? Do patients feel comfortable in their care, do they understand the medical treatment or are there any ambiguities? Additionally, a question could boost the mechanisms of information transfer between patients and their care professionals.
A great healthcare professional takes time, poses question and talks.
Conceptual Model
Using in-depth interviews, insights into patients’ primary care experiences related to self-management support were gained. We learned that patients could manage their chronic disease more effectively if they feel supported, involved in the care process, listened to, if their care is coordinated and if they are questioned. Based on these five main categories, we were able to identify and formulate concepts to describe the key characteristics in the support of self-management. The conceptual model for primary care practice includes five fundamental tasks that need to be performed by healthcare professionals - Supporting, Involving, Listening, Coordinating and Questioning (SILCQ) – that contribute to efficiently supporting chronic patients’ self-management. These tasks were incorporated into the model as the acronym ‘SILCQ’ (Figure 1).
Patients are in most cases connected to a social network. We defined this network as ‘the social environment’. According to the participants, the social environment consists of the closest surroundings of a patient. The composition of the social environment varied and was different depending on the patients. Possible members were relatives, friends, and partners. This network was reinforced by peers in some cases. In this close environment, someone had taken upon the role of informal caregiver.
“I am in contact with the health insurance fund.
Also, with my parents, of course, and my friends and family...
And the nurses for appointments and to accompany me to scans etc.
And my home help... And the family doctor.” (patient)
“I think that fellow sufferers are important. Like the pain society...
That's very good because there you get to know people who also understand you and who are also going through the same thing to some extent. I find the support of those people enormous.” (patient)
Being able to manage a chronic condition is closely related to support by the entire care network, including the social environment. The proposed model considers these interactions in a patient-centred care network.
“And if she suddenly has a disease flare, I call the medical practice to ask for help.
Afterwards, I can get a medicine from the pharmacist, because in those situations she is out of medication. When I call, the doctor says: 'Yes, go ahead.' So, I call the pharmacist and I say to them: 'I have a problem, but I don't have the prescription for the medication yet. Can I already pick up the medication?' I’ll bring it later, and that is not a problem.” (informal caregiver)