82 Themes from interviews and focus group discussions with health care professionals Theme 1: Not recognizing HL problems Difficulties to identify LHL Female, 32 years, general practitioner (INT): ‘I think I can learn a lot about identification because I find this difficult, mostly for the group in between. The very extremes, I think I am aware of them.’ Difficulties to comprehend barriers of people with LHL Female, 56 years, dialysis nurse (INT): ‘They [patients] don’t have interest for their health. I cannot understand that. I try to explain what happens with his or her body. What all healthy people do is exercise and eat healthy. The patients, they should do that as well, but they do not do that. Also, the medications - they don’t know how to take it sometimes. I think that’s a problem.’ Female, 56 years, dietician (FGD): ‘I tried to make it easy. They had a dog, but the partner was walking it. And I said, try to come along once a day, but the patient did not do it. I did not know what to do next.’ Male, 61 years, general practitioner (FGD): ‘When patients are not following advices, it activates a fatherly role in yourself. If that is the best way to help people, I am not sure, but it happens. Me, taking over responsibility!’ Theme 2: Lacking effective strategies Common strategies do not work Female, 44 years, general practitioner (FGD): ‘We are may be too focused on the final goals and give less attention to the steps in between. For example, we say that someone needs to exercise more, so that he can use the bicycle again and do all kind of activities. And that he thinks: ‘I won’t reach that anyways and I can’t even make it to the end of the driveway.’ Then biking is of course not an option.’ Female, 52 years, specialized nurse dialysis (FGD): ‘They receive a book with information on dialysis. Almost no-one will have a proper look. People who do that, are an exception. 1 out of 25 people.’ Emphasis on medical information Male, 31 years, general practitioner (FGD): ‘To understand something is bad, you need to understand something about your body. We always try to explain that to the patients. But I think, in some cases this is absolutely pointless, because these patients don’t want to know the full function of the kidneys. And then, they become totally, uhm, they are unable to have overview, and become stressed.’ Problems with tailoring of strategies Male, 53 years, nephrologist (FGD): ‘It’s an art to differentiate with whom you can do that and with whom you cannot [communicating consequences such as death clearly]. And there is a group that you have to follow for longer until you know, okay, I really need to make this clear. Weeks go by.’ Female, 39 years, nephrologist (FGD): ‘With some [patients] you pay more attention than with others. For some it is quite clear what they understand. Just name it and you are set. Others need extra time. But you don’t always know, for example when someone is heavily nodding ‘yes’ when you ask if it is understood.’ Limited use of beneficial strategies Female, 32 years, general practitioner (FGD): I always find it difficult to ask patients to repeat what I just told. It feels like, uhm, like I am interrogating them. Female, 44 years, general practitioner: Yeah, I also experience a barrier to ask that. I think, well, I just told you, and you are here to listen, so…….’ Female, 55 years, specialized GP nurse (INT): ‘Providing information and using tools to find out if they really got the message or using more pictures, I think that is something to work on.’
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