An interview based investigation into parents’ experiences of caring for their child following a severe Acquired Brain Injury (ABI) in the United Kingdom Liz Bray , Clinical Lead, The Children’s Trust. Aims of the study.
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An interview based investigation into parents’ experiences of caring for their child following a severe Acquired Brain Injury (ABI) in the United Kingdom
Liz Bray, Clinical Lead, The Children’s Trust
To explore parents lived experiences of caring for their child following a severe ABI
“ I think the hardest thing was trying to communicate with him”
“ He was wearing pads all the time, that was very confusing for him. You know, he couldn’t, for quite a while, couldn’t communicate with anyone”
“Yeah I used to talk to other parents, having all the other parents there as well sometimes was really good. ...
and you realise in fact, you know, you’re all in the same boat here, and yeah if we can give some support to each other, then it’s a good thing”
“the brain injury education is a must. Umm... the sooner the better to be honest... as he’s not the kid he was”
“not knowing is worse than knowing because once you know, even if it’s horrible, there is a route through, and actually you’ve just got to do it”
Parents identified how important hope was and described how they never gave up hope
“it’s not that you give up hope, ‘cos I don’t, honestly I don’t, I will never give up hope”.
“I was overpowered with the thought that my other children needed me”
“no matter what happens nobody can ever make anything easier. It’s still devastating, it’s just changed everything, absolutely everything for us, you know”
“’call your family in, say your goodbyes, he’s so poorly he’s not going to make it’. But he did”
“People are always saying to me ‘but that’s good’ and I’d say yes it is, but deep inside, that’s when I realised there was this loss that I hadn’t dealt with”
“I sat in the back of the ambulance and it was two days after my birthday and I just remember thinking umm... I can’t do this, and I just remember saying to myself all the way ‘I have to do this’ but I just can’t do this”
“I’ve made some good friends here, the parents. There were times when we’d go back to the parents accommodation and we’d all sit in the lounge and we would have a drink and we would just let ourselves go and we’d have a really good chat, you know, about all the kids, what’s going to happen, how it’s affected everyone and it... it was good. It relieved a lot of pressure to actually talk to somebody that’s in the same boat as you”
“The thing that hasn’t worked well for me is the err... is... is the funding from the Primary Care, which has been horrendous, and like you say, it is err... a postcode lottery”
Professionals could benefit from gaining an insight into parents experiences to inform and enhance their practice, enabling provision of needs led services for children and their families
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