Background
Life transitions
YAs with life-limiting conditions: systematic literature review
Rationale, study aim and research questions
Research questions
Methods
Ethics
Recruitment
Participants | Inclusion criteria |
---|---|
Young adults | • Diagnosed as having palliative care needs, and considered to be within the last 5 years of life • Aged 15–25 years • Able to provide consent • Able to communicate with researchers (through relevant means, e.g., communication aids) • Considered to be able to participate by the directors of care at the partner organisation accessed by YAs |
Significant others: Family members or friends | • Family members or friends of YA above • Able to provide consent • Nominated by YA |
Significant others: Professionals | • Professional staff/volunteers working with the young adults above • Able to provide consent • Nominated by YA |
Participants
YAs
Significant others
Data collection
Interviews
Time Point 1 | Time Point 2 | Time Point 3 | |
---|---|---|---|
Young adults' Interviews | n = 10 | n = 10 (two withdrew, but a further 2 participated) | n = 8 (one was unwell; one was not contactable) |
Significant Others' Interviews | Nomination of family members and professionals by young adults, for data collection at time points 2 and 3 | Family members, n = 10 Health/social care staffa, n = 10 Medical staff, n = 2 | Family members, n = 4 Health/social care staff, n = 4 |
Data analysis
Results and discussion
Multiple transitions of YAs with life-limiting conditions: educational, social and developmental (RQ1)
Health and educational transitions
So when I was younger a lot of the time in hospital… I missed a lot o’ primary school…but apart fae [from] that … it doesn't really stop me, I just continue what I do… (Kirsty, Interview 1)
… I found like before I left school there wasn’t as much encouragement to find what you liked to do at college, it was almost like you're kind of pigeonholed … it's almost like eh, you're disabled…and you find that you get put in classes wi’ people with behavioural problems, or learning difficulties and … you find that and it's like you can't do what you want to do… (Robert, Interview 1)
… so I kinda thought like I'm not smart enough to do higher stuff or something, it was kinda like, like a hint [slight laugh]… [I felt] Annoyed… ‘Cause it wasn’t my own age group, that's the problem…as soon as school finished they all went to university … and I like just went to college … I could have done it [university]… but I just never got a chance… (Alex, Interview 1)
Health and social transitions
I've got friends at college… eh, I've got family, got carers, I've got friends here that I keep in contact with on Facebook and stuff … (Kirsty, Interview 1)
… my friends that aren't disabled, they can just jump on a bus and go somewhere… I have to have somebody that takes me everywhere … (Kirsty, Interview 1)
…his social life revolves around his care staff at the moment … (Health care professional, nominated by Adam, Interview 1)
I’m going to wheelchair football tomorrow afternoon…I’ve been going out as usual, to pictures and stuff. And out at night. Saw ‘name of a play’ at the theatre… Good access…disabled bits on different levels – bottom and top bits; I could see fine – level with the stage. (Harry, Interview 3)
Health and developmental transitions
Independence
With regard to Helen’s care team, (they need) not to micro-manage Helen… she’s the boss. (Social Care staff, nominated by Helen, Interview 1)
Self and sense of identity is delayed in some young people with disabilities because of the parents’ need to nurture and protect and wrap… (Social Worker, nominated by Alex, Interview 1)
… he keeps saying … he wants to have sex …I think needs to come in steps, because if somebody turned up and said “let’s have sex,” he would absolutely have a heart attack… ‘cause he's not held hands with anybody… (Health care worker, nominated by Adam, Interview 1)
…so we thought maybe the best way was to try and get him some sort of like sex aid or sex toy or something like that (Health care worker, nominated by Adam, Interview 2)
Moving out
Susan wanted to move into a flat with her boyfriend… she's been dating since school…he’s also wheelchair-bound … I was so against it…we put the extension on the house, Susan has her own private space in here, but she's still got family support to fall back on… (name of boyfriend) comes over for sleepovers and, there's nothing more I think for her to gain from moving out, so she agreed with me... (Susan’s parent, Interview 1)
Susan was involved in the second stage interviews, picked a girl… it works, it works, Susan has then some choice of who’s looking after her… (Susan’s parent, Interview 1)
Child to adult services
… Children’s Services were great… anything Susan needed as a child, there wasn’t a huge fight behind it… the minute she becomes an adult it's a problem…I think in Children’s Services they understand that, that you know your child better than anyone…especially when there's communication problems (Susan’s parent, Interview 1)
… we have to treat him as an adult…that's quite difficult I think for him, because we’ll say no… I don’t see that as reasonable, that's going to impact on your clinical care… we maybe need tae consider if he’s refusing medication and it's causing him clinical issues, we need to take these things on-board ‘cause it's quite a complex package … (Health Care lead, nominated by James, Interview 1)
… I'm actually seeing the Social Worker … to see about getting George’s respite budget switched tae Self-directed Support… so that he can then choose where he goes … because it's difficult with his trachy stuff … not a lot o’ respite places that will accommodate that … (George’s parent, Interview 2)
Death and loss
… she went tae one o’ the funerals … she’ll talk about her friends if that's happened… gets upset and all the rest of it, but … we avoid [talking about dying]…it's down to ‘Susan’s mother’ really [to talk about it or not] (Susan’s grandparent, Interview1)
… other young people … have died, and …he's been affected by those losses… also staff move on and there was a staff member died and he attended the funeral… he's… experienced a lot of death and dying… and… staff made redundant …so everything in his life changed… he was really sad, em and was able tae say … “what's the point in being alive when nobody really cares about you”… (Social care staff, nominated by Philip, Interview 1)
Multiple and multi-dimensional transitions of significant others: family (RQ2)
Diagnosis
…we had a bit of a battle wi’ the, the GP tae take it seriously… I had ten months o’ going back and forward and being told I was neurotic and, a first time mother and you know he was just a lazy baby … it was quite traumatic… I was kinda getting, from my husband and my family “leave it alone, there's nothing wrong wi’ him” (George’s parent, Interview 1)
Oh traumatic … when they said that it would be unlikely she would be a teenager … and she was ten, so you're saying ‘God that's only two or three years to go,’ … traumatic, and it took us a while to get over it, as Susan’s mother said “och, I've done my grieving now,” … but… you don't, you never really do … there's still going to be an impact as well …‘cause you don't expect to have funerals for your children, never mind your grandchildren … (Susan’s grandparent, Interview 1)
…they're in limbo … certainly their parents….and young lads themselves, expected them to die in their teens (Consultant, nominated by Alex, Interview 1)
Change in role and family relationships
… it did put a strain on it for a while… me and my mum we're… quite close …and I found that the relationship was becoming, like…I was seeing my mum as a carer …and not, not my mum … you want your mum to be your mum, you don’t want her to be your carer… (Robert, Interview 1)
[due to provision of extra care] I don’t have to be here... it's good because Peter and I get to spend some more time together…‘cause … missed out on so much with him and he’s very good with her… over the years…he’s been plucked out o’ bed over, overnight in pyjamas, she’s been going to hospital, he’s been put down to my mum’s or up to my brother’s and he’s just so accepting of it … I think he’s probably suffered more than anyone … ‘cause he doesn't have your normal childhood… (Susan’s parent, Interview 1)
… we've [Emilia and mum] always been really close … it's only ever been us two like kinda against the world … mum wasn’t particularly easy in the whole process … she was pushing people away… if they wanted to be there and part o’ her life as much as I did then they would have fought for it… [they] left us to our own devices, but we manage, we get on… (Harry’s sister, Emilia, Interview 1)
Change in aspirations, social and educational transitions
At one point I was thinking, well why should I be out partying and enjoying myself, when he’s stuck in the house and he can't do nothing… why should I be going and starting a life for myself, moving away tae (name of city) …and the guilt’s probably the hardest thing because realistically you shouldn’t really have anything tae feel guilty about… (Harry’s sister, Emilia, Interview 1)
…my mum still bodily carries Harry … if somebody had showed her when Harry was first diagnosed how tae use a hoist and stuff like that… she probably would have used a hoist right through … I don’t understand why mothers who have got disabled children shouldn’t be put through some sort o’ care qualification tae be able tae look after their sons or daughters in the correct and proper manner, and not destroy their own bodies in the process… (Harry’s sister, Emilia)
He has also not been able to get comfortable at night. This has a big impact on my ability to sleep, and my feelings of tiredness. It’s stressful – mental stress … he had written on his Facebook page ‘I hate my life’ … lots of emotional responses, and people contacted me with their concerns. I had to deal with all that … (Harry’s parent, Interview 2)
Multiple and multi-dimensional transitions of significant others: professionals (RQ3)
… so not only have I had to educate myself, but … I’ve had to change my own thinking …I find that [talking about end of life issues] very, very difficult …I have never had any training or help in how [to] address these issues with young people (Consultant, nominated by Alex, Interview 1)
… the condition he's got, you know the outcome… what to expect, but when you see it happening…it's quite heart-breaking…sometimes I’ll go home from work and I’ll just sit and, I won’t cry, but I’ll just be sitting, actually drained. (Social Worker, nominated by Adam, Interview 1)
…as a (name of specialisation) physician I spend a lot of time doing that [talking of death] with older people… but I find that pretty, pretty traumatic… and although I like to think that I'm a, a kind of sympathetic kind of guy…I readily admit that I feel very awkward and lacking in confidence at doing it with … YAs… (Consultant, nominated by Alex, Interview 1)
...it's hard, emotionally hard when you know that a young person’s … not accessing the …fundamental things of life to do with food and drink … and I guess I've been through a whole load of emotions with him… (Social Worker, nominated by Alex)