Table 3.
Participant quotes—physical symptoms and concerns, and spiritual and existential concerns
| Quote number | Quote | Participant details |
|---|---|---|
| Physical symptoms and concerns | ||
| Q1 | ‘…and that’s what we live for, we just carry on for her smiles. Because she doesn’t have a great value of life, this is (child’s) life mainly but she is happy…erm and she’s not in discomfort, so I can’t really ask for anything more than that.’ | Mother of an 8-year-old with a neurological condition |
| Q2 | ‘So, it’s about being realistic but reassuring them that we have different medications we can use for different situations and that we will continuously try and control symptoms. Obviously not promising that we can get everything under control, but we will try our hardest’ | Nurse |
| Q3 | ‘Now it’s about trying to control seizures the best we can, we know we can’t totally control them’ | Mother of a 14-year-old with a metabolic condition |
| Q4 | ‘P: Well, she has seizures and they’re triggered easily, pretty easily…umm I: Do you know what sort of things trigger them? P: Umm…her being excited, like going to do like a sport that will trigger it, like swimming that could…’ | Sibling of a child with a neurological condition |
| Q5 | They say if you don’t eat then you need a nose tube. I don’t like them | 11-year-old with cancer |
| Q6 | ‘…erm or when we have anything from our treat box, it…I kind of feel sorry for him because he can’t…he’s watching us eat it and he can’t eat any of ‘em’ | Sibling of a child with a gastrointestinal condition |
| Q7 | ‘its very difficult when people say ‘well can’t you just put him in his wheelchair and take him for a walk round the block?’ and I’m like ‘I haven’t slept for fourteen hours’. I don’t wanna get him in his chair and take him for a walk around the block because I…I’m exhausted and it’s not because I’m lazy, its because I’m physically exhausted’ | Mother of 14-year-old with metabolic condition |
| Q8 | ‘I get worn out a lot quicker, so I can’t like run around for long or stand for long…. or like go on long walks’ | 14-year-old, congenital condition |
| Q9 | ‘…sometimes you see like, when you…when like you’re at the park or something, like you see people staring and you just think…oh honestly, I couldn’t really care any less. Because if she didn’t have the pipe, she’d just be a normal person and she is a normal person now. It’s just that she has… medical reasons’ | Sibling of a child with a congenital condition |
| Spiritual and existential concerns | ||
| Q10 | ‘I think its variable. It’s um, I think sometimes it’s not necessarily a question that we are very good at asking. I think it’s one that we miss out on.’ | Nurse |
| Q11 | ‘…as I’ve gone through all of these…all of this and I’ve been in hospital…erm I always remember that, you know there as someone who suffered even worse for me and that, you know gives me peace because I know that you know I can suffer…you know I can go through all these things but nothing is gonna like keep me down and that yeah I’m always gonna continue to get back up on my feet and even if…even if something happens that, you know I’m in hospital for a very long time and things don’t get better, I know that you know, that there’s a greater hope and like the greater hope is in Jesus and that I trust in that. You know even whatever happens, whether you know I die or whether I live, it’s for “him” and you know I’m just gonna continue to live a life according to his grace’ | 17-year-old, gastrointestinal condition |
| Q12 | ‘I’m just thinking about parents that…that talk about usually losing their faith actually when it comes to end of life. I mean some find their faith and some lose it’ | Psychologist |
| Q13 | ‘I’m not godly, I don’t believe that there’s a higher being out there I don’t believe anything like that but I’m not a hundred percent certain and I just felt it was the right thing to do because I got told that my son was gonna die. I need to get him christened just in case’ | Mother of a 14-year-old with metabolic condition |
| Q14 | ‘So, in [country], if you’re [tribe] if someone dies, someone stays with the body until they are buried. And that is built into the system. But here if [child] was to die in hospital either after hours or a weekend or bank holiday, the body would be moved to the morgue alone and I wouldn’t be able to be with him until a death certificate was issued, which can only be done by a person who works in the morgue who isn’t want to be there on a bank holiday, after hours or on a bank holiday weekend. Um so we have it in our care plan that [child] is not to die in hospital.’ | Mother of a 2-year-old with a metabolic condition |
| Q15 | ‘They haven’t told me, after the year, they don’t know if I’m going to live or everyone knows what’s the other, they’ve said they can only tell what is going to happen now.’ | 13-year-old, cancer |
| Q16 | ‘The teenager that died recently, I mean she was still going to do her GCSE’s this summer. And she died much quicker than we thought. But no, she was definitely going to still do them.’ | Nurse |
| Q17 | ‘…just …remember that even if I have this disease, I want to live my life normally and it will get better. I mean the treatments already started so now I will get more en…I will have more energy and I’m looking forward to just enjoying what…what is coming’ | 15-year-old with metabolic condition |
| Q18 | ‘So, I dreamt of you know doing having the lifestyle with [child] like I’d had. Being a beach bum, you know sort of rock pooling. And you know sort of that, and you know you had all these dreams and aspirations and things. But they didn’t pan out’ | Mother of 10-year-old with neurological condition |
| Q19 | ‘You know ‘why me?’ and we had a lot of anger first off, again the issue I just said ‘Oh you know ‘eat your veg, fruit and veg, you know you’ll be big and strong’ you know’, ‘drink lots of water because it’s good for you’ erm…and initially we had the “well you lied to me, why…you know why, why me. Why, what have I done wrong?”’ | Father of 13-year-old child with a gastrointestinal condition |
| Q20 | ‘It’s I guess it’s not about you know, her, her being, you know, her physical, you know if she’s if she has physical issues. It’s more I guess about her learning and development you know. Making sure that she can, not necessarily develop at the same pace as everyone else but she’s still developing. So that you know, hopefully she can you know, she can experience love, relationships, work and you know, she has you know what we consider to be the standard things.’ | Father of a 1-year-old child with an infectious disease |