Table 2.
Selected participant quotations for each theme
| Theme | Quotations |
| Struggling with daily restrictions | |
| Debilitating symptoms and side effects | I'd wake up and be totally fine and then by 3 o'clock in the afternoon, I couldn't walk because my ankles and my knees were so swollen with water. (F, 22–25) |
| It was limiting in a lot of ways. I got sick a lot, with infections and colds. It seemed like everything knocked me down. And then I would deal with the HSP* rash and then I had nephrotic syndrome and I actually went through chemo to treat the nephrotic syndrome, which caused me to drop out of college and it, it impacted my academics a lot and a lot of the things that I got to do.(F, 18–21,) | |
| The medications, they are really strong. They affect your memory, they affect your body, they affect you in every way. (F, 31–35) | |
| Giving up valued activities | I did a lot of sports in my early teens. I did competitive swimming, football and rugby and I had to stop. I was devastated. (F, 18–21) |
| What I wanted then was just to feel better so that I could go to school. I loved school. I've always been quite academic. I hated not being there. I hated that, I wasn't well enough to go to my dance school and I pretty much gave up dancing. (F, 22–25) | |
| My friends went to Europe, I couldn’t go. Travel’s probably the main thing. That was quite hard. (F, 26–30) | |
| Impossible to attend school and work | I was physically uncomfortable, because of tubes sticking out of my stomach and chest. I just wanted to be home all the time. (F, 31–35) |
| I'm juggling school, it’s just a big juggling act at the moment. And even then, I'm still struggling cause sometimes I can't make it to school. Not because of my mental state. Just because I'm so tired. (M, 18–21) | |
| Trapped in a medicalised life | Back then I had a lot of restrictions. I had catheters, Hickman lines and was fed via a peg tube (F, 26–30) |
| Before, I was doing home haemodialysis, I thought my life was ending because I had to be stuck with this machine, three times a week for hours. (F, 26–30) | |
| It’s three times a week, 5 or 6 hours each day. It’s just ridiculous. So much time. And then when you get off, you feel so drained and I couldn't really socialise much and everything. (F, 22–25) | |
| I kept going back and staying in hospital. For me that was a bit like escaping from the real world I guess. I guess you just get a bit institutionalised. (F, 22–25) | |
| Overprotected by adults | I was able to, but my parents didn’t let me go outside. They said: you should stay home and rest. (M, 18–21) I've talked to Dr. X about it, and he’s like ‘no,’ because his other |
| Patients have gotten really sick, so that adds to my anxiety. I mean he’s telling me not to go (travel to Asia). (F, 26–30) | |
| After the transplant they told me ‘maybe you shouldn’t play netball because you could hit the kidney’. What some doctors tell you keeps you in a bubble if you follow it, I guess. (F, 18–21) | |
| Cautious to avoid health risks | I'd absolutely love to go to Egypt. But they recommend live vaccines. I can’t have that. And it’s definitely not worth having the vaccine and getting ill from it. (F, 22–25) |
| Always when I do something, there’s a list that I go through in my head; how is this going to affect me and if it’s going to be bad or positive or how it’s going to affect my kidneys. (F, 18–21) | |
| I cannot go out drinking with friends or I can go and I'm the only one sitting with no drink, it feels stupid. (F, 22–25) | |
| Lagging and falling behind | |
| Delayed independence | I missed out on a proper education. I feel like I've missed 3 years of my life, I feel like a 17-year-old stuck in a 19-year-old body. I feel like I'm too old for who I really am. I just feel like I'm not quite smart enough at the moment to be almost 20 years old. (M, 18–21) I’d like to move out, but if anything serious happens and I can’t work, I can’t pay for the place anymore. (M, 22–25) I think financially is mostly where it’s been an issue. I feel like I'm dependent on either the government or my dad or even my fiancé sometimes, because I don't have the same education. I don't have a degree in order for me to get a good job. (F, 22–25) |
| Failing to keep up with peers | All my friends would go out after school and play out and all that kind of thing. I was never able to do that because I just didn't feel well enough. (F, 22–25) |
| My friends are already graduated and at work and they look like they have a goal and I don't even know what I want and I'm already 25. (F, 22–25) | |
| I would always play hide and seek instead of tag because I didn't want people to make fun of me for not being able to run properly. (F, 22–25) | |
| Socially inept | I'll exclude myself in situations where I can't do something or didn’t feel comfortable. (M, 22–25) |
| I kind of withdrew from a lot of my friends. I think that I missed out on some social skills. Socially I feel kind of impeded. (F, 22–25) I used to be sad too. I'd really kind of avoided hanging around with kids. (F, 22–25) I feel a bit socially awkward, I don’t know if it’s because of my lack of social interactions when I younger. (M, 22–25) | |
| Defeated and hopeless | |
| Incapacitated by worry | Because when you have kidney disease, it just feels like you're a prisoner versus normal. (F, 26–30) |
| Oh my gosh, I'm nearly halfway (estimated graft survival). And you know that there’s no say in that it’s only 20 years or that it is definitely 20 years. It could be more, it could be less. You just don't know. But at that time it just got in my head that I was almost halfway (about the transplant). (F, 18–21) | |
| And then if your kidney was to fail then what? If you are a young mum and you have kids and everything. You can't afford to be in hospital again. (F, 22–25) | |
| An uncertain and bleak future | I understand that my life participation is going to decline and that I won't be able to do things and I'm going to have to compromise. (F, 18–21) |
| I think you can only have a couple of transplants because of the medication and because of the antibodies and all that kind of stuff. And each transplant works for like 10 years. I mean, you can do the counting. (F, 18–21) | |
| I'll probably say Brexit is one of them. We don't know what’s going to happen. Cause I probably will be doing home dialysis and the supplies are all from European countries. (M, 26–30) | |
| Unworthy of relationships | I'm not in a relationship now. I had to like consider it with a guy and that’s when it comes up. I feel like I don't want to burden people. (F, 26–30) |
| You put yourself down and you start thinking, would anyone ever love me because I have those problems. (F, 22–25) | |
| It’s a little bit hard to be friends with somebody who’s a sick kid, which is though to say, but I think it is harder to have a friend who’s sick. (F, 18–21) | |
| Low self-esteem and shame | I have been on prednisone for 6 years now, so I have a moon face and it’s caused me to gain weight. I was a lot skinnier before, I had a lot better self-image. It’s been really impactful. (F, 18–21) |
| It was hard at school because obviously I looked different. I had tubes sticking out of my stomach. I had to be careful how I sat, I had to be careful around other kids. Kids had no idea what it was. They'd make fun of you. (F, 26–30) | |
| I used to see girls of my age getting complimented by guys and the guys actually wanted to go out with them. So I used to feel really bad about that. (F, 22–25) | |
| I think I am kind of a self-conscious person as well. So the symptoms of the prednisolone and the face blowing up and all that was a big issue for me. I was always conscious about that and the kids bullying and stuff like that. That was hard. (F, 22–25) | |
| Reorienting plans and goals | |
| Focussing on the day to day | Whenever I plan a future, it doesn't happen. Just planning short-term. I'll be planning what I have to do in the evening and what I have to do tomorrow. (F, 22–25) |
| I've definitely learnt to just kind of take every day as it comes and just see what happens. (F, 22–25) | |
| I feel like the transition from being in hospital for so long and coming out, it was really hard. In the hospital you had stress as well, but you're only stressed about; Oh, am I getting dialysis today? Am I going to cramp really bad today? While now, I suddenly have to think about other stuff. (F, 22–25) | |
| Planning parenthood | Getting my eggs harvested so that, when I decide if I want children I can select ones without the PKD*. (F, 18–21) |
| I had to change medications because it causes birth defects. So I had to do that and I just have these worries. Like what if I start to lose my kidney during pregnancy? Do I have to get back on dialysis? Is my child going to be okay? Am I going to pass anything down to my child? And that’s if I can get pregnant. (F, 31–35) | |
| Being a father, I found out I have to stop my mycophenolate for 3 months and then I have to do IVF* now. (M, 22–25) We were told we had to have kids soon. So from not really hearing that before to hearing that straight away, we were quite a bit shocked. (F, 26–30) | |
| Forward and flexible planning | I do find myself thinking, it would be beneficial to find something where if I have to go part-time, I can still afford to live. I'll probably have to go part-time at some point to accommodate dialysis. (F, 22–25) |
| I didn't drink yesterday and I haven't drunk today just so I could drink this warm chocolate. (M, 18–21) | |
| Before the diagnosis I was really into track and after the diagnosis I was into rowing because I could sit down and do it. (F, 18–21) | |
| Immersing oneself in normal activities | |
| Refusing to miss out | I didn't see myself as unable to do things that they could. (F, 18–21) |
| I still tried to do the things I wanted to do, while still being on haemodialysis. It didn't stop me from what I wanted to do. (F, 26–30) | |
| We did five-a-side football, which I was able to do because they made like a special shield that went over the kidney. (M, 26–30) | |
| Finding enjoyment | My experience is a lot of friends come and see me, support me. And you know, we play cards during dialysis as well. (F, 22–25) |
| I feel like there’s a sense in me that just wants to keep having fun. I think when getting dialysis, I couldn’t have fun, I couldn’t really enjoy my life as much. My participation in life was really low. So, I don’t know why, but there is just an urge, I just want to keep having fun now that I can. (F, 26–30) | |
| I suppose getting a hobby, like for me, I play games and I also go to the gym. I suppose just doing things that make you feel good about yourself. (M, 22–25) | |
| I just enjoy it because I've seen the worst parts of life, now I'm enjoying the best. (M, 22–25) | |
| Determined to do what peers can do | And I think just being able to do the things that your friends do. I think that’s, as a child, that was all I wanted. All I wanted was just to be in quotations ‘normal’. And to be able to do everything that everybody else did. (F, 22–25) |
| You want to be able to participate in the way your peers are participating, like people your age, without having to make adjustments. So, you don't feel different or left out. (F, 31–35) | |
| Being present at social events | If you are able to handle it, you should go party with your friends. Because why not? You don't have to do everything your friends are doing, you don't have to smoke or drink. (F, 18–21) |
| I suppose just getting out there and doing things. Like if a friend invites me to go see a movie or get lunch, I just do it. (M, 22–25) | |
| I still go to a lot of activities and stuff like that. I don't let that stop me. I went on a lot of dates, met people. (F, 22–25) | |
| Striving to reach potential and seizing opportunities | |
| Encouragement from others | My parents always made sure that my education didn't get affected because of it. I used to get hospitalised a lot, so my mother used to teach me in hospital. I used to do my homework there. (F, 22–25) |
| I joined a Facebook group with patients from all over the world. They participated in this year’s world transplant games and really encouraged us. (M, 18–21) | |
| My family, friends and faith, 3 times F, gave me the confidence to try new things, get back on my feet again, do the things I want to do. (F, 26–30) | |
| Motivated by the illness | There’s a difference now where I'm no longer using it as an excuse to not do things, but as an excuse to do things. I’m making it a reason to do things. (F, 18–21) |
| I recently started a health blog on Instagram and I'm starting a YouTube channel. (F, 22–25) | |
| I try to do my best to give them (children with CKD) advice or just try to be there for them, because I didn't have that when I was transitioning (to adult care). I'm there for the new generation, help them cope, be that inspiration. (F, 22–25) Doing the best I can to keep fit and well. Going to the gym twice a week. (M, 22–25) | |
| Establishing new career goals | Maybe that sickness will give me strength. And it will help me if I work as a nurse. (F, 18–21) |
| If it wasn't for haemodialysis I wouldn't be where I am today. Like being an advocate, being working at the hospital, you know, getting that voice heard. (F, 26–30) | |
| I, for example, would not have started counselling. I wouldn't care so much about people. I wouldn't care so much about their mental health. Before kidney failure, I was into fashion. (F, 26–30) | |
| Grateful for opportunities | So I met up with him and we talked about our own experiences and now he has published a book as well. He’s a big star in Taiwan, I look up to him. (F, 22–25) |
| I'm competing in the world transplant games, I compete at the British games every year and next year I'm competing at my first European games. (M, 26–30) | |
| Got invited into lots of functions. Met lots of celebrities and sports stars. We're still friends with some of the people that are still on television. (F, 18–21) | |
HSP, Henoch-Schönlein purpura; IVF, In vitro fertilisation; PKD, Polycystic kidney disease.