Of the 468 responders of the questionnaire, 139 included additional comments to the free-text question. The respondents (from here: informants) who added comments had a mean age of 69 years, 76 (55%) were women, 63 (45%) men; 85 (61%) stated that they had T2DM or 56 (40%) KOL, whereas 12 noted that they had both.
Some informants commented on the questionnaire’s wording (relevance and lack of a “Not relevant” answer option), a few simply answered “No” or “None,” and yet others briefly explained why they considered it irrelevant to answer the question. However, several respondents added both short, informative and longer, more detailed comments suitable for the thematic analysis.
In Step 1, a total of 116 codings were recorded, resulting in 25 descriptive themes (Step 2). In Step 3, six analytic themes were generated: To be seen, met, or heard, To feel safe or not, To be involved or dictated to, Accessibility, COVID-19, and For the resourceful. The analytic themes included descriptive themes of both a positive and negative nature (e.g., Being involved—Don’t get choices), except for the theme COVID-19, which only reflected negative codes and descriptive themes. Although intertwined, the analytic themes are presented individually to ensure that the nuances provided by the informants are included. In Table 1, the coding tree is presented.
Table 1
Coding tree (descriptive themes and analytic themes).
Descriptive themes
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Analytic themes
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I always feel welcome
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To be seen and heard
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I am seen [by the GP]
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I do not feel heard
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My wishes are not met
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The GP is not interested in COPD (n = 7) / Diabetes (n = 1)
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The GP does not listen to the patient’s knowledge
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Superficial
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The GP does not think it is that bad
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It is quite a burden to live with a chronic disease
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The GP does not understand the problems related to diabetes
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They act textbook wise
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I feel safe
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To feel safe or unsafe
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I feel satisfied
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The GP knows too little about COPD/diabetes
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I wish for specialist treatment
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I feel unsafe
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I feel that I am involved
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To be involved or dictated to
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I prefer close collaboration
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The treatment is dictated
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I don’t get choices
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It is difficult to get access to a GP
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Accessibility
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The nurse does not know that much
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Challenges due to COVID-19
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COVID-19
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You have to be resourceful
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For the resourceful
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You have to look for information yourself
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You are left alone
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I don’t receive much help
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To be seen, met, or heard
Intuitively, to be seen, met, and heard are prerequisites for being involved. This theme was one of the most prominent (32 codes), represented by both positive and negative sides. A few informants wrote clearly and unambiguously: “I always feel welcome,” or “My GP sees me.” However, a significant number of informants expressed that they were not heard or not met, that they felt superficially treated, and the GP only did what was absolutely necessary: “They act textbook wise.” The informants commented that they had been challenged by their chronic disease but had a sense that the GP “… does not think it is that bad” or is not interested at all. Of those stating that their GP was not interested, seven were diagnosed with COPD and one with DM. Informants from both groups noted that their GP did not listen to them and did not understand how it is to live with a chronic disease.
Accessibility
Accessibility is also considered a prerequisite for involvement. This theme was represented by 13 codes and two descriptive themes—A challenge to get access to the GP and The nurse do not know that much—and, thus, primarily visible as negative experiences. Some informants stated that their regular control visits were mainly managed by a nurse and that they only obtained access to the GP once a year, as in: “I did only speak to a nurse,” or “I have only had written communication with my doctor, which has been one-way communication.” Only a few of these comments were directly negative, as in: “Haven’t seen a doctor for years—my treatment has been managed by a nurse, and they haven’t all been that good to handle diabetes problems,” whereas most comments related to this theme were rather a laconic realization that they had not seen a doctor but a nurse.
COVID-19
Closely related to accessibility was the analytic theme COVID-19, representing 10 codes and a similar descriptive theme. Even though some informants voiced some indignation and a sense of being neglected and overseen not having seen a doctor for some time, other informants expressed acceptance and explained this feeling with COVID-19. They had either been offered a telephone consultation instead of a face-to-face consultation or had their consultation postponed due to COVID-19. Why the informants mentioned this when asked about their involvement remains unclear. However, some informants explained that these telephone consultations tended to be short and primarily focused on information about test results, whereas other informants explained the lack of involvement by the presence of COVID-19 prohibiting face-to-face consultations.
To be involved or dictated to
The core theme within this analysis was To be involved or dictated to. This theme included 37 codes and four descriptive themes: To be involved, Close collaboration, Treatment is dictated, and Get no choices—and was, thus, also represented by both positive and negative sides. Some informants mentioned that they had expressed a wish to either see a doctor (not a nurse), have their disease managed by a specialist nurse (not a GP), or have their disease managed by a specialist hospital (not a GP) without being heard. Another group of informants stated that their treatment, medication, or tests were not discussed, and alternatives were not presented; they stated that these aspects were dictated. One informant stated, “I was not asked….I was told what I was not allowed to do and which medication I had to take,” and another informant described in more detail:
“Ten years ago, I was diagnosed with Diabetes Type 2. I was offered
Metformin® but said no. I changed my diet and exercised. I still do. This caused my blood sugar to decrease. Ten years have passed, and particularly exercise has kept my blood sugar down. But the treatment option was drugs and not exercise. So, I have actively opted out of the GP’s options and chosen an active lifestyle.”
However, there were also some statements indicating a good and informed dialogue concerning lifestyle changes and choice of medication, leaving a sense of being involved: “My doctor appreciates that I am involved in both trajectory and medication; I am very lucky and satisfied….”
It appeared that the informants equated being asked and involvement; being informed tended to result in a sense of being dictated to, whereas information followed by dialogue and a question of what the patient preferred seemed to result in a sense of being involved. This process is described rather precisely by one informant: “I was informed but not met.”
To feel safe or not
This theme was reflected by 32 codes and the five descriptive themes: To feel safe, to be satisfied, The GP knows too little about COPD/diabetes, A wish for specialist treatment, and To feel unsafe. On the positive side of this theme, several informants simply stated: “I am satisfied,” “I feel safe,” or “I am taken seriously.” However, most comments in this theme evolved around the informants’ sense that the GPs lacked knowledge of their disease—this applied for both patients with T2DM and COPD. The informants stated that they were superficially instructed, that they had to seek information themselves, and that they were worried about misinformation due to these aspects:
I have only received very superficial instruction regarding diet and exercise. I had to seek the information through the diabetes association. Of course, I have also looked at social media, and if you only get your information from there and not from more reliable sources (which I, after all, think the diabetes association is), then you risk being thoroughly misinformed, particularly regarding diet. Many strange diets that are harmless at best have been well described.
This being-left-on-one’s-own situation left some informants with a sense that things are handled randomly and of feeling unsafe. Several informants mentioned what they experience as the GP’s lack of knowledge about the diagnosis and about recent research. On the other hand, other informants stated that they experienced a high sense of safety, adequate follow-up, and a good dialogue.
Although this theme emerged unambiguously, it appeared to be closely related to the former themes, particularly To be seen, met, or heard and To be involved or dictated to but also both Accessibility and COVID-19 because the sense of feeling safe (or not) depended on whether they were seen, met, heard, involved, informed, and/or had access to their GP when required.
For the resourceful
The final analytic theme—For the resourceful—included 14 codes and four descriptive themes: You have to be resourceful, You have to look for information yourself, You are left alone, and I don’t receive much help. Despite some informants explicitly writing: You have to be resourceful, this theme can be considered the essence—or rather the consequence of—the previous themes. When having to seek information oneself, accept online or postponed consultations, or change into a healthier lifestyle on one’s own, being resourceful will consequently be advantageous. Within this theme, the informants stated: “There is no follow-up; I have initiated control by an ophthalmologist—this is my own responsibility.” Initiation of either specialist assessment or follow-up by the GP is mentioned by more informants: “I asked for additional control of blood sugar” and “There was no plan—I asked for it myself.” The detailed citation presented in the former theme (To feel safe or not) is also an illustrative example of a resourceful patient; the informant comments upon the risk of being misinformed (i.e., lack of safety) but recognizes superficial information, seeking information, and recognizing the risk of misinformation would generally be a challenge for less resourceful patients. Hence, although the quote adopted as a label for this theme—You have to be resourceful—was most likely meant to explain how this informant experiences being a patient with a chronic disease managed in general practice, our analysis might indicate that involvement is also for the resourceful.