Regarding the place of PA in diabetes care, most of the professionals noted it was something they almost always mentioned to their patients or asked them about, as ‘the foundation of treatment’:
For all topics [in diabetes care] the same applies: there are always more or less the same advices, namely, do more PA and take care of your diet. But PA, that’s a tricky subject. It is not something people are easily inclined to. It’s difficult to change, always. (Gemma, nurse specialist)
This quotation is illustrative of the findings in several ways. It underlines the importance of PA in diabetes care according to the professionals, but the use of ‘tricky’ refers to difficulties and tensions that accompany PA counselling, at least from the perspective of the professionals. It seems to be something that challenges them. This is exemplified by the two main areas of tension found in the professionals’ stories: the first is the understanding of patient behaviour and related difficulties that the professionals encounter; the second is the professionals’ views on responsibilities, both for behaviour change and as professionals. These two areas overlap at times and are further explained in this section.
Understanding patient behaviour
The stories displayed a lot of references to understanding patient behaviour, varying from some understanding to none at all. The analysis revealed that these references mainly reflected differences the professionals had experienced between themselves and their patients, both implicitly and explicitly mentioned. These were differences in experiences with and meanings assigned to sport and PA, opinions on healthy living and taking personal responsibility for health, and social positions. Understanding was influenced by both personal and professional experiences that made it more or less easy for the professionals to identify with patient behaviour.
For instance, some professionals had personal experiences that increased recognition of their patients’ difficulties to become more active. Three professionals could not practice their favourite sport anymore because of an injury or illness and discovered that they ‘hated’ to go to the gym. Two others had other priorities at the moment – a mother being ill, a young child at home – and noted that they would like to be more active, but were not able to realize it. A GP explained that she started running and found it very difficult, especially because of the muscular pain. This made her realize that her patients needed someone guiding them, for example, a physiotherapist, to tell them, ‘This is normal… You need a week to get used to this’ – an addition that may also reflect a distance between her, having a lot of experiences with sport, PA and probably aching muscles, and her patients, mostly without these.
Based on their work experiences, several professionals came to understand that the goal of the medical guideline – being moderately active for 30 min a day  – was ‘unrealistic’ for many of their patients. They emphasized that ‘small steps are also steps’ and discovered that for most patients, especially those who were not used to being active, it was important to ‘think’ in small steps. These were preferably steps that could be integrated in daily life, like cycling to the store instead of taking the car. Some professionals mentioned that they often tried to slow patients down, because otherwise ‘they’ve all kinds of excuses why they didn’t succeed the next time’. Nicole (dietician) emphasized the importance of small, realistic goals, while she also noted that many of her patients did not know they should be active for an hour a day to lose weight. A goal quite difficult to attain, she added.
Some other professionals, especially the physiotherapists, did keep the norm of 30 min a day in mind: they provided trainings for three months twice a week and encouraged patients to do something else at home in order to meet the standard. However, some of them experienced this to be quite difficult for patients without positive PA experiences: ‘It is a utopian dream to think you have it fixed in 12 weeks.’ This shows a tension between guideline and practice that leads to other understandings of what to expect from patients.
Another tension was related to differences in views on healthy living. Some professionals held quite strong views about their patients, especially the physiotherapists – who seemed to experience the greatest differences between their own and their patients’ behaviour and to disqualify the lifestyle of their patients most strongly:
Every now and then I have conflicts with those people, because they have a totally different approach on how to keep your body healthy. And that’s difficult. (…) I find health a privilege. (…) I think that if you get a good package from home, you need to treat it decently. So that means: don’t stuff yourself with that much food and burn enough calories. (…) I find it very hard that people have so much difficulties with this. (John, physiotherapist)
The average diabetic is not willing to be active. Now, I put it very black and white; that’s not nice to say. The average diabetic has overweight[ness], comes from a lower SES group. In general. He has no money to do sport, or isn’t willing to pay for it. Because they have money for a big flat screen. But yeah, they give low priority [to PA]. You have to see it this way, or I see it this way. (…) It irritates me. Of course, you have problems with your ankles and knees, you are 30 kilos overweight. (…) I think: ‘That’s just not necessary, that you became that fat. Where did it go wrong?’ I experience this from my own perception, my own situation at home with two incomes, nice house. A totally different perception than from someone sitting at home. And I cannot look behind the front door, that’s the problem. (…) Everybody can be active (…) just walk or cycle. (…) Priority, that’s what it is all about. (Marcel, physiotherapist)
Especially, Marcel seemed to have difficulties in understanding his patients, while also being conscious about his different social and economic position. In the story of Krista (physiotherapist), the tension between understanding patients who are not willing to do something for their health on the one hand and realizing the difficulties of behaviour change on the other seemed to be the most palpable:
Actually, given the fact that I’m working in a deprived area [where a lot of people with diabetes live], I find it surprising how difficult it is to get a group of people together [for my training programme]. And then, it’s often difficult to let people be here every time. Easy excuses to not be there again, you know. Not legitimate reasons, in your eyes, but yeah, what’s legitimate? For someone else, well, ‘the neighbour is here to drink coffee [so I cannot be there]’. (…) So how important is PA for you? To keep on going, that’s quite difficult [for me], to keep the motivation up. (…) And I let them pay 25 euros, as a sort of promise [to keep coming]. But there is a lot of moaning – that’s a big word, but they find it a burden. And then I think: ‘Well, hello, you can do trainings for three months for this 25 euro[s].’ (…) I don’t totally understand this. Do you really want to change something about your health or not? And isn’t this worth it? While you might make other decisions you easily pay 25 euro[s] for. (…) You flog a dead horse sometimes, to put it disrespectful[ly], and you don’t feel like it. I want to give some input, but you have to want to be here yourself. (…)
But it is quite difficult to do exercises at home consequently. I find that hard myself, too. Sometimes I think: ‘Now, I’m going to do stomach exercises for a while.’ Well, a week is over before you know and you think: ‘Ooh! I’d do those exercises! Wait, it is like this for that patient as well…’ (…) So I get that for someone with already a difficult body, to realize this, that’s far from easy, when you’re 140 kilos, to start being active. We’d carry three backpacks, or maybe even four. ‘Go and train on that cross trainer.’ Well, that’s hard (…) And that stupid homeopathic pill I needed to take twice a day, how many times did I forget it? That really was an eye opener for me. What are you expecting from everybody? So, you can say, ‘Do your exercises daily or go and be some more active every day’, but between good intentions to do so – because I really wanted to take that pill – and doing it, that’s not so easy. It’s quite difficult. Man is such a creature of habit.
She seemed to be disappointed and frustrated by the lack of enthusiasm for the programme she offered. However, some of her own experiences made her gain an understanding of her patients’ difficulties as she could better identify with these. This quotation clearly illustrates certain contradictory feelings related to the understanding of patient behaviour and the difficulties professionals experience.
Most of the professionals balanced a bit between understanding and at the same time not really understanding the behaviour of their patients. Several emphasized that ‘PA is something extra, it comes on top of it all’, as people with type 2 diabetes also have to take care of medication, diet and sometimes try to quit smoking. Three others mentioned that most of their patients do not feel ill or are not bothered by their diabetes in daily life, which makes it ‘hard to constantly keep the focus on diabetes’ or see the necessity of continuing PA. Many noted the importance of positive childhood experiences in sport and PA, something they almost all had themselves, but knew many of their patients did not. Financial barriers were mentioned a lot, and a GP added that sport can be quite expensive, especially when you are not used to paying for it. Some professionals referred to socio-economic or cultural differences between them and many of their patients, like a lower socio-economic status, living in a deprived neighbourhood or having a non-Western background, especially for women. These patients were thought to have more difficulties in understanding the messages, to set certain ‘priorities’ and to implement PA in daily life. Although this seemed to result in a sort of understanding or acceptance on the one hand, it also made it difficult for the professionals to really understand the difficulties on the other hand, because they were not familiar with these circumstances.
These differences were also visible in the way the interviewer was sometimes included in the story of the professional: ‘of course, we easily talk about PA’, Paul (physiotherapist) said to the interviewer, without knowing anything about her PA story. This illustrated a presumed difference between him and the interviewer on the one hand and his patients on the other hand. Sarah (practice nurse) formulated it this way:
You just have two categories of people: those who sit behind the wheel, who want to have control over their life, have their own responsibility and take it, and there are people who sit in the back of the bus and let themselves be driven, who let it happen. And if those people don’t undergo a change [in attitude], they have a long way to go before they get in at the front of the bus, sit there. Then you have such a different way to go before you even talk about PA.
Sarah was very active herself, in contrast to a share of her patients. Although she was conscious of this difference and reflected on it throughout her story, at times she had difficulties in understanding patients who seemed to have another view on taking responsibilities for their health. This is where the tensions between the themes of understanding and responsibilities overlap.
Responsibilities for behaviour change and professional responsibilities
Within the theme of responsibilities, several questions or tensions seemed to arise: who is responsible for behaviour and behaviour change? What are professional responsibilities and what are not? How far do these responsibilities go? Several professionals talked about changes in their profession over the years related to this theme; for instance, in the way of communication with a growing emphasis on ‘motivational interviewing’ – instead of telling patients what to do, they have learned to ‘lean backwards’ and let patients tell them what they want to do. Alice (diabetes nurse) experienced a transition from being a professional who knows what to do towards being a kind of counsellor now. She also saw the attention to behaviour change in diabetes care increase a lot. The three physiotherapists with more than 25 years of work experience noticed a comparable transition – from giving massages and ‘fixing’ patients to letting them be active during therapy and searching for a solution, namely becoming more active in daily life, together.
Overall, tensions related to responsibilities developed mainly from doubts or ideas about when it is time ‘to let someone go’. As Emma (just started working as a physiotherapist) put it:
That’s frustrating sometimes, that the GP, the practice nurse, the physiotherapist… Everybody puts so much energy, time and enthusiasm into it. And if someone really doesn’t want to, do we have to keep on trying? Or do we need to say, ‘It ends here’? Luckily, I didn’t experience [that someone really didn’t want to]. (…) I didn’t see them, but I believe they exist.
This quotation also illustrates a professional image of specific patients: those who do not want to be active. In the end, the professionals considered it to be the responsibility of the patient – ‘if people don’t want to, that’s fine, then it stops’. However, they seemed to differ regarding the possibilities they could offer as a professional. For Nicole (dietician), it was clear that her patients needed help, otherwise they would not come and see her, although the only things she felt she could offer were advice and discussions about the topic. After 40 years of work experience, Willem (internist) had ‘little illusions’ left:
Type 2 diabetes is a consequence of our lifestyle. So here you see the development of a chronic illness as a consequence of your own behaviour. (…) Getting people to be active is a public health care responsibility. My responsibility is to offer these people, when they have developed diabetes, their care as good as possible (…), not to change their behaviour. Even if you do your absolute best, it won’t happen. That doesn’t mean you don’t have to try, especially with younger people and people you can have a good conversation with, it sometimes happens. But the alteration of people is strongly dependent on the environment they want to and can live in, and that’s something I cannot change from my health care position. (…)
I quit saying, ‘It’s nice to do some exercise’. Sometimes, I propose: ‘How about cheating? Let me send you to a physiotherapist, so you have to do it for a while.’ But then [when the insurance fee ends after three months] people tell me, ‘I quit, because I didn’t get it paid anymore’. Well, yeah, you can walk outside, guys. That’s what you get, especially people with type 2 diabetes, nine out of ten revert to the same habits. So, I’m pessimistic about it. But in this case, it’s realistic. (…) I do my best for the people I see, but, in the end, I won’t create a solution with my advices.
He mentioned the need for professionals to see some results of their efforts in order not to lose motivation, a ‘what’s in it for me?’ for professionals. Although he hinted at the rare possibility of results, he seemed to have let go of feeling responsible for the behaviour change of his patients, as he experienced it to be beyond his reach. He was the only professional who explicitly expressed this view. He did not consider behaviour change the responsibility of his patients alone, either, but also of public health care, although the ‘you can walk outside’ remark reveals an ambivalent attitude towards this.
As a limitation to professional responsibilities related to PA counselling, several professionals mentioned characteristics of the health care system, like lack of time, low frequency of appointments or a focus on protocols instead of people. Especially, Gemma (nurse specialist) considered ‘the system very difficult at the moment’, with an increasing emphasis on administration and high demands of insurance companies. Willem (internist) mentioned both time and the focus on protocols as difficult:
I’ve only ten minutes and more to discuss. So that’s too little [time] to seriously talk about it. (…) My first question is: ‘How are you?’ And they give me their sugar levels. That’s not what I asked. (…) Our practice nurses are also drilled to focus on bringing those sugar levels down. That’s why we have the best diabetes care in the world, but now it’s time to look more at the person instead of its numbers.
Elena (practice nurse) admitted that she needed the protocol as something to hold on, but at the same time found it difficult because ‘that whole list is not the list of the person [themselves]’. She found a way in between: after finishing the protocol, she asks people how they are.
The limited overview and possibilities of PA options to refer patients to were also mentioned several times. Professionals considered the possibilities as often temporal because of subsidies that ended, and therefore found it difficult, and also not necessarily their responsibility, to keep the overview up to date. A frequently mentioned subject was the temporariness of physiotherapy – because insurers cover three months of training – and the difficult task for patients to continue to be active afterwards. This was not so much mentioned by the physiotherapists themselves; most of them told about their patients being enthusiastic during trainings, but losing them out of sight afterwards. However, the other professionals – those who referred patients to the physiotherapist and saw them back afterwards – experienced that only few people were able to continue to be active on their own.
A specific theme that emerged among the ‘consultation room professionals’ – those who did not offer PA trainings – was a tension between the wish to offer people something more than only advice or to consider this not a responsibility at all.
If the step to start is too big, I cannot do anything else. I can hardly take them by the hand and go with them, can I? So, then it’s with them. I can give some advice, but they need to get going themselves. I’d prefer to say, ‘You have to do this and that’s it – easy’. But it doesn’t work this way and that will always be difficult. (Alice, diabetes nurse)
I’m a GP, so I’m not someone who actually goes along with people if they have to be active. A GP often gives advices, discusses resistance, doubts or constraints and gives explanations about the importance of being active. (Thomas, GP)
At the moment of the interview, however, Thomas was involved in the organisation of a walking group. However, he tried to do this together with volunteers and social work, as he did not consider it a responsibility of him and his colleagues to keep such a group going. Elena (practice nurse) started a weekly walking group herself, because she wanted to offer her patients something concrete and accessible instead of ‘only telling them to be more active’. Marjolein (practice nurse) also started such a group. Both spent some of their spare time on the organisation. They were enthusiastic about their group, and felt it offered something important for some of their patients, both because of the physical activity and the social aspects. However, they also considered it quite a lot of effort to keep it going and find new people to join, and sometimes felt frustrated by this. Especially, the story of Marjolein seemed to represent different tensions related to the theme of professional responsibilities and the motivation to keep going as a professional:
Actually, people prefer to be picked up at home, taken by the hand and properly brought back home again. Yeah, society changed; that’s not possible anymore. (…) So now I’m letting it go a little bit; it needs to be initiated by the patients as well. And sure, I can meet someone halfway, help them to get on board, but people who are not motivated to be active, that’s such a waste of time. Really, that’s not fun for both of us. (…) At the front door, you need to be able to assess if someone is motivated or not. And with those who are, you go on. And those you think are not, or people who think they won’t achieve anything, you have to let them go. That’s the tendency at the moment. (…) I’ve heard all [the] excuses by now. So that makes it very, very difficult to stay motivated [for me]. To get going every time. To keep on walking. (…)
Sometimes, it just doesn’t work. There are people who say, ‘I don’t feel like being active, I don’t see the benefits’. Then you talk about this several times to make the benefits clear. And if they still don’t want to, well, fine, then it ends. Then it’s not my responsibility anymore. I tell people sometimes: ‘It’s your chronic disease. You can see me as a kind of supermarket to get knowledge and information from, but you have to deal with this. (…) But don’t say that you didn’t know later on.’ Because this is something that is made understood good and proper to such an extent, that nobody can say that. So, they know, but it’s just what they want with it themselves. It doesn’t make me feel forced to… well, I always talk about it, but if they don’t want to… (…) I need to be sure they understand they can do something about their illness themselves by being more active and eating healthier. But if they know and do nothing about it, well, then it’s their own responsibility. (…) I mean, I won’t get paid any less or something.
This ‘letting people go’ and assessing the motivation at the beginning, was something she learned over time: ‘Yeah, you also change in this process.’ Some other professionals also told about this:
I learned it not to be my responsibility. In the beginning, you want to save people. (...) There is so much possible! You can do so much about it yourself! So, you are inclined to expect someone else to have your own norms as well, norms about health and taking responsibility yourself. (Sarah, practice nurse)
This illustrated a shift in feelings of responsibilities over time, something Krista (physiotherapist) deemed necessary to ‘stay healthy as a health care professional’.