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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. 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

aims of the study
Aims of the study

To explore parents lived experiences of caring for their child following a severe ABI

introduction
Introduction
  • There is limited literature from the United Kingdom detailing lived experiences of parents following their child’s ABI
  • ABI is a traumatic life changing event for the child and family, the intensity of subsequent neuro-rehabilitation means staff often form close relationships with families
methodology
Methodology
  • Naturalistic paradigm
  • Heideggarian phenomenological approach
  • Purposive sampling
  • Semi-structured interviews conducted on a one to one basis with 8 parents
  • Interviews recorded and typed up verbatim into transcripts
  • Data analysed using thematic analysis
results 8 final themes identified
Results8 final themes identified
  • Effects on child post ABI
  • Emotional support
  • Information and hope
  • Effects on the family
  • Fear of death
  • Transition
  • Family accommodation
  • Funding
1 effects on the child post abi
1. Effects on the child post 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”

2 emotional support
2. Emotional support

“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”

3 information and hope
3. Information and hope

“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”

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Hope

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”.

4 effects on the family
4. Effects on the family

“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”

5 fear of death
5. Fear of death

“’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”

6 transition
6. Transition

“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”

7 family accommodation
7. Family accommodation

“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”

8 funding
8. Funding

“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”

recommendations
Recommendations
  • Parents need emotional support and accurate up to date information about their child
  • Information needs to be delivered in a way that enables parents to maintain hope
  • Other family members also need information and emotional support
recommendations1
Recommendations
  • Professionals need to be aware how difficult parents find transition from ITU to a general ward
  • Family accommodation is important for families to enable them to be with their child in hospital and neuro-rehabilitation
conclusion
Conclusion

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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Thank you for listening.

Do you have any questions?

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