Background
Methods
Participant selection
Data collection and data analysis
Ethical considerations
Results
Respondent | Gender | Age range | Stage | CIS fatigue |
---|---|---|---|---|
R1 | F | 36–45 | 3b | - |
R2 | F | 46–55 | 4 | Severe |
R3 | M | 46–55 | 3b | - |
R4 | F | 56–65 | 4 | Normal |
R5 | F | 26–35 | 4 | Severe |
R6 | F | 26–35 | 3a | Severe |
R7 | F | 56–65 | 4 | Severe |
R8 | F | 36–45 | 4 | Severe |
R9 | F | 46–55 | 4 | Severe |
R10 | F | 56–65 | 3b | Severe |
R11 | F | 18–25 | 3b | Severe |
R12 | M | 36–45 | 4 | Severe |
R13 | M | 26–35 | 4 | Severe |
R14 | F | 46–55 | 4 | Severe |
R15 | M | 26–35 | 4 | Severe |
R16 | M | 36–45 | 4 | Severe |
R17 | M | 66–75 | 3b | Normal |
R18 | M | 56–65 | 3b | - |
R19 | F | 46–55 | 4 | - |
R20 | F | 36–45 | 3b | Severe |
R21 | M | 46–55 | 4 | - |
R22 | F | 36–45 | 3b | - |
R23 | F | 36–45 | 4 | - |
R24 | F | 46–55 | 4 | - |
R25 | M | 46–55 | 3a | - |
R26 | M | 18–25 | 3b | Severe |
R27 | F | 46–55 | 3b | Severe |
R28 | M | 26–35 | 3b | Severe |
R29 | F | 56–65 | 3b | - |
R30 | F | 56–65 | 4 | - |
R31 | M | 56–65 | 4 | - |
Respondent | Gender | Age range | Stage | CIS fatigue |
---|---|---|---|---|
R32 | M | 46–55 | 3a | Severe |
R33 | F | 56–65 | 3b | Normal |
R34 | M | 56–65 | 3a | Severe |
R35 | F | 56–65 | 4 | Normal |
R36 | M | 56–65 | 3b | Normal |
R37 | M | 66–75 | 3b | Normal |
R38 | M | 36–45 | 4 | Severe |
R39 | F | 36–45 | 3b | Severe |
R40 | F | 56–65 | 3b | Severe |
R41 | F | 46–55 | 4 | Severe |
Percentage | |
---|---|
Age 18–25 | 4,9 % |
Age 26–35 | 12,2 % |
Age 36–45 | 24,4 % |
Age 46–55 | 24,4 % |
Age 56–65 | 29,2 % |
Age 66–75 | 4,9 % |
Women | 59 % |
Men | 41 % |
GFR 20–29 | 49 % |
GFR 30–45 | 51 % |
Stage 3A | 9,8 % |
Stage 3B | 41,5 % |
Stage 4 (not lower than GRF 20) | 48,7 % |
Score severe fatigue on CIS-fatigue | 75 % |
Score severe fatigue on CIS-fatigue with GFR 20–29 (16 persons had a GFR between 20 and 29 and filled out the questionnaire) | (75 %) |
Score severe fatigue on CIS-fatigue with GFR 30–45 (16 persons had a GFR between 30 and 45 and filled out the questionnaire) | 75 % |
Theme | Subthemes |
---|---|
Physical aspects | - |
Social aspects | Growing up |
Intimate relationships and sexuality | |
Desire to have a child | |
Family life and raising children | |
Social contacts | |
Societal aspects | Ignorance and image formation |
Trivialising | |
Pressure to legitimate | |
Fear of stigmatisation and prejudice | |
Embarrassment and identity | |
Education, work and social security | |
Healthcare | Education |
Contact with professionals | |
Multidisciplinary care and self-management | |
Experimental care and future treatment | |
Psychological aspects | Deterioration - insecurity and trust |
Coping |
Physical aspects
‘My battery is full when I wake up in the morning, but my battery runs low during the day’. (R6, F, 26–35 years, GFR 45)‘I can’t describe it. How to describe fatigue? For me it is having sudden moments without having any energy and without being able to do anything’. (R4, F, 56–65 years, GFR 23)
‘The most difficult part of having CKD is the fact that it never stops. It is a never-ending story and you are running from problem to problem. It’s an accumulation’. (R14, F, 46–55 years, GFR 20)
‘Is it a direct consequence of your disease or is it the result of other circumstances? It’s hard to make that distinction’. (R32, M, 46–55 years, GFR 45)
Social aspects
Growing up
‘I had to make other choices, I wasn’t able to follow their [peers] paths’. (R38, M, 36–45 years, GFR 27)
Intimate relationships and sexuality
‘It was scary to tell my current boyfriend about the disease. I was afraid that he would leave me’. (R20, F, 36–45 years, GFR 42)
‘I can be afraid if I think about the future … Will he still love me if I have more restrictions? And can we stay partners on equal terms?’ (R20, F, 36–45 years, GFR 42)
‘You are not a real man anymore because of your decreased libido. It feels as if I have failed’. (R16, M, 36–45 years, GFR 25)
Desire to have a child
‘The nephrologist has said that I can have children. But he also mentioned the risks for my kidney. So I was thinking … We should not do it … And what can I offer a child if I’m in hospital three times a week for dialysis’. (R23, F, 36–45 years, GFR 35)
‘It’s hard to defend yourself. People are always asking why we don’t have children. They have their own opinions and prejudices. The worst are those people who say “that the disease isn’t that bad and that you never know how medical science will develop”. Of course they are right but it is my choice and I don’t want my children to have an ill mother’. (R20, F, 36–45 years, GFR 42)
Family life and raising children
‘You don’t live the life you would like to live. I can’t lead the life I envisioned for myself and my kids. … I’m just trying to survive’. (R22, F, 36–45 years, GFR 35)
‘Ï’m worrying about my wife since she has to deal with my disease and the worries about the potential disease of our children’. (R18, M, 56–65 years, GFR 39)
Social contacts
‘Conversations at parties stagnate when you say that you don’t work’. (R10, F, 56–65 years, GFR 38)
‘I used to have many friends and my network was getting bigger and bigger. And I assumed that I needed to maintain all these contacts. But I’m no longer able to do that so I had to make choices: who is really important to me and who is not? Who are the people I want to give my time and energy to and who are not’? (R6, F, 26–35 years, GFR 45)
Societal aspects
Ignorance and image formation
‘People think about dialysis or transplantation when I say that I’m a renal patient. They don’t know the other options. It is not seen as renal disease if you are not on dialysis or if you don’t have a donor kidney’. (R9, F, 46–55 years, GFR 26)
Trivialising
‘I don’t want to bother other people. It would be different if you had cancer’. (R37, M, 66–75 years, GFR 30)
Pressure to legitimate
‘I don’t tell my nephrologist my problems any more. She will not take them seriously’. (R41, F, 46–55 years, GFR 20)
‘People don’t realise the impact of having this disease. They tend to ignore it and I think they see me as someone who fakes it’. (R22, F, 36–45 years, GFR 35)‘I felt guilty and I felt that I had to defend myself constantly towards others’. (R8, F, 36–45 years, GFR 23)
Fear of stigmatisation and prejudice
‘My colleagues and employer don’t know that I have CKD. I’m afraid they will use it against me’. (R20, F, 36–45 years, GFR 42)
‘I don’t want to have the “stamp” patient, because I don’t feel like a patient right now’. (R32, M, 46–55 years, GFR 45)
Embarrassment and identity
‘I used to be [name] from my job, then from the horses and now … now I’m [name] from nothing. I’m nothing’! (R41, F, 46–55 years, GFR 20)
‘I sometimes wonder: do they still like me? They know me as the one dancing on the tables. I’m now the one who is sitting in a corner, chatting and drinking somewhat. People are going to see another part of you that is getting bigger and bigger than the part of you they used to know’. (R6, F, 26–35 years, GFR 45)
Education, work and social security
‘I was working full-time; it was too heavy. I fell asleep during my work! Really embarrassing’! (R5, F, 26–35 years, GFR 20)
‘It is a negative label that is put on your forehead’. (R41, F, 36–45 years, GFR 20)
‘I really want to continue working but I don’t have the energy for other things. I’m not sure anymore if work is worth all the sacrifices’. (R27, F, 46–55 years, GFR 38)
‘The doctor who had to decide whether I was able to work or not said: “come back if you have to start with dialysis; for now we are not going to change anything”.’ (R23, F, 36–45 years, GFR 25)
‘Did I choose to have this disease? I don’t think so … but it feels like being punished’. (R8, F, 36–45 years, GFR 23)
Healthcare
Education
‘The information does not fit. It’s like you fall between two stools a little’. (R28, M, 26–35 years, GFR 39)
Contact with professionals
‘I want to be more than my renal function. They don’t see you as a person’. (R2, F, 46–55 years, GFR 27)‘The nephrologist is just looking at you when you explain your fatigue. And the only thing he does, is telling you: “It doesn’t fit with your GFR: it doesn’t fit”.’ (R6, F, 26–35 years, GFR 45)
Multidisciplinary care and self-management
‘I knew I had to follow a diet, but nobody has ever told me that and nobody has ever supported me starting a diet’. (R2, F, 46–55 years, GFR 27)
‘They offered me such care after years. It was too late, I had already solved my problems on my own’. (R8, F, 36–45 years, GFR 23)
Experimental care and future treatment
‘The prospects of the medication were promising. Yes, I jumped for joy when I could participate. It’s exciting: you just intensely hope you may profit yourself. But there is also another side of the medal. Every 3 months you are being checked and informed about your blood values. A first injection, a second injection, a subsequent test, yet another test. You just feel like a patient and that’s not always pleasant’. (R20, F, 36–45 years, GFR 42)
‘The nephrologist advised me not to think about dialysis or transplantation yet because I’m not in that stage of the disease yet. But I know I will need it 1 day so it’s not that easy to put all those emotions and doubts away’. (R20, F, 36–45 years, GFR 42)
‘The physician said to me: “You can avoid dialysis if you are able to find a donor”. I was looking at my family and friends and then decided: I’m not going to ask them! I don’t want to take the risk. What if something happens to them’! (R5, F, 26–35 years, GFR 20)
Psychological aspects
Deterioration - insecurity and trust
‘You are not quite sure about the possibilities of your body, now and in the future. It is such a silent disease. It may become worse without you noticing it’. (R27, F, 46–55 years, GFR 38)
Coping
‘I have a diet and this makes me happy since it gives me a sense of control: I can do something to stop the disease’. (R27, F, 46–55 years, GFR 38)
‘There is not much I can do to stop it. My blood pressure is good and a diet doesn’t help. Living a healthy life is the only thing. This can be frustrating sometimes. Something happens in your body and there is nothing you can do, nothing but wait and see’. (R26, M, 18–25 years, GFR 40)
‘My daughter is pushing me towards a diet. No way! It is not going to happen since my quality of life is more important than quantity’! (R18, M, 56–65 years, GFR 39)
‘The environment doesn’t know your possibilities and limitations. They are asking you … can you please do this and that … And my reply: “Of course … I will do it all”.’ (R22, F, 36–45 years, GFR 35)
‘I try to live day to day and see what I am able to do right now. I tend to ignore the future a little. Thinking about that is too overwhelming and emotional, so I just try not to do that’. (R20, F, 36–45 years, GFR42)
‘The notion that it will be more difficult in the future is always there. I may not have many problems right now, but the sword of Damocles is always hanging over my head’. (R26, M, 18–25 years, GFR 40)
‘I find that difficult, being dependent or being stigmatised. I just wanted to take part as long as possible. Especially in the past few years, I really crossed my limits … because I did not want to be seen as weak’. (R4, F, 56–65 years, GFR 23)
‘I sometimes sacrifice things—cycling, swimming, yoga—if something else is more important to me. There are no “must-dos” anymore’. (R4, F, 56–65 years, GFR 23)‘These are difficult choices. What is most important to me? Work or being able to do something in the evenings and during the weekend’? (R26, M, 18–25 years, GFR 40)
‘It is funny though, because I went from a state of denial to total acceptance, I believe’. (R6, F, 26–35 years, GFR 45)‘You just get it served and have to eat it like that, whether you like it or not’. (R33, F, 56–65 years, GFR 38)