81 Themes from interviews with CKD patients with LHL Themes Example quotations Theme 3: Not taking a front-seat role Negative emotions Female, 74 years, GP care: ‘I do try to think along and force myself to be less lazy. However, last week, I was alone all the time. At half past seven in the evening, I went to bed. I was very tired, probably also because of my blood sugar levels. Yes, some periods I am terribly tired.’ Not signalling and solving problems Female, 46 years, dialysis care: ‘In the past, I did eat pizza and fries, and I drank cola. I think that I am to blame a bit for, uh, a faster deterioration of my kidneys. If I could do it over, I think I would do it differently. Eating healthier, for example cooked potatoes and vegetables.’ Leaving responsibility with others Male, 28 years, transplant care: ‘They do everything for me. My girlfriend organizes my medications and my mom checks it afterwards. My mom and dad even gave me a kidney.’ Female, 72 years, dialysis care: ‘Especially when it is about group education. For yourself, you are a bit stuck with it. What should I do? Where should I pay attention to? And then others are asking questions. Like my daughter in law, she dived into it and came along with me to ask the questions.’ Theme 4: Maintaining change Resignation Male, 49 years, hospital care: ‘Now, they [HCPs] also start about alcohol. Well, at some point you are not allowed anything. If you need to quit everything that is bad, I think it is better to commit suicide. Because everything is bad, this is bad, that is bad. Let me smoke my cigarette. I am okay with that.’ Female, 74 years, GP care: ‘I think that I have reached an age that justifies: ‘Do I like to eat snacks? Then I will bring tasty snacks! Do you have tapas in the evening? Who can judge me? Right?’’ Failed attempts to change Male, 63 years, hospital care: ‘I received a book ‘life with less salt’. It was full of things [to do]. I had to buy all kind of products I almost would never use and the recipes were for two persons. I needed to find out a lot. I prefer to cook the way I am used to.’ Male, 90 years, GP care: ‘Careful with sugar and drink enough. That are two important rules. But I am a snatch. So, uhm, I try to persist, but at the same time I have my cookie jar close. I know it is bad, but I have that since I was a child.’ Importance of rewards Male, 72 years, GP care: ‘Actually, with things [drinking alcohol], I need an extra reason to lessen. If, that is, for example, related to the kidneys and the liver, and I see the function is decreasing, that would be a good reason to drink less alcohol.’ Male, 49 years, hospital care: ‘Yeah, if they will now tell me what I can do to protect my kidneys, then I wonder and think: ‘You are a bit too late now, I have kidney problems for 7 years. You found out too late and if you give me information now about how to protect the kidneys, I will lay it aside.’ Conflict with others Female, 74 years, GP care: ‘In the past I had to go to someone in the general practice. She started: ‘You have to change this and change that’. The words ‘have to’ constantly came first. Then I said to her: ‘Now you have to listen to me. As a child I had to listen to my parents and since I am old, it seems I have to listen to my children, but I am done. I don’t have to do anything and I won’t.’ Table 3.2 Continued
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