80 Themes from interviews with CKD patients with LHL Themes Example quotations Theme 1: CKD elusiveness Unawareness of CKD Female, 86 years, GP care: ‘That dietician for my sugar, who is here, she said that about kidney function, yes, that must be it, I believe that she once said something about that being checked.’ Male, 79 years, hospital care, about CKD diagnosis: ‘It is a, how do I say that, a bothersome disease. Well, diseases are always, but before they had found out what was wrong, years had passed by.’ Lack of symptoms Male, 84 years, hospital care: ‘In the beginning you tend to say, so be it. Actually, at that point, you don’t see the problem of it [having CKD] yet. It is not much of a burden. You don’t notice anything.’ Limited sense of urgency Male, 63 years, hospital care: ‘I had no idea it [CKD] could be very severe, so to say. And then, later, that nephrologist said I was very close to needing dialysis. Then I thought, wait a minute, maybe it is bad after all. But then it was already too late, so it doesn’t matter anymore. Well.’ Theme 2: Suboptimal uptake of knowledge Struggle with the details Female, 72 years, dialysis care: ‘Last time, she [the dialysis nurse] said ‘Packed your bag yet?’ and I said: ‘Where should I have packed my bag for?’. She answered: ‘After 7 months, you might receive a call [when a kidney is available]. I said: ‘No way, the doctor said it would be after 2 years’. Then she said ‘Well, the 2 years started last year’.’ Female, 74 years, GP care: ‘They told me I had something in the urine and they took a piece of…I can’t remember what it was. I went to the hospital. No, I don’t remember. Something I had in the urine.’ Absence of information Female, 71 years, GP care: ‘The fact that I have some protein in my urine makes me wonder. Where does that come from, proteins in the urine? No further explanation is given about this. Maybe it is comparable to the sugar? That had gone up again.’ Overwhelming information Male, 72 years, dialysis care: ‘The one time potassium is high, the other time there is too much iron. In the end, you don’t know what to eat anymore. Well, at least we tried, right?’ Limited skills Female, 46 years, dialysis care: ‘If a leaflet lies there [at the hospital], I will check what I might find interesting. Attractive stories, for example. I would read the leaflet a bit. But I will not read everything, because when I start reading at the beginning of the text, then suddenly my eyes will go somewhere halfway the page.’ Overestimation by the HCPs Female, 86 years, GP care: [about the number of topics during a consultation]: ‘First, she had the results for the blood tests, just for the sugar. Then she measured my blood pressure. Next, she checked my feet. Well, that was not very good. Then we talked about my bladder. I could be that she said something about the kidneys. That something is going on. I have no idea what she said exactly.’ Table 3.2 Overview of the main- and subthemes with exemplary quotations for CKD patients with limited health literacy and health care professionals
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