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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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Aims of the study

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 of caring for their child following a severe Acquired Brain Injury (ABI) in the United Kingdom

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


Introduction
Introduction of caring for their child following a severe Acquired Brain Injury (ABI) in the United Kingdom

  • 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 of caring for their child following a severe Acquired Brain Injury (ABI) in the United Kingdom

  • 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
Results of caring for their child following a severe Acquired Brain Injury (ABI) in the United Kingdom8 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 of caring for their child following a severe Acquired Brain Injury (ABI) in the United Kingdom

“ 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 of caring for their child following a severe Acquired Brain Injury (ABI) in the United Kingdom

“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 of caring for their child following a severe Acquired Brain Injury (ABI) in the United Kingdom

“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”


Aims of the study
Hope of caring for their child following a severe Acquired Brain Injury (ABI) in the United Kingdom

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 of caring for their child following a severe Acquired Brain Injury (ABI) in the United Kingdom

“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 of caring for their child following a severe Acquired Brain Injury (ABI) in the United Kingdom

“’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 of caring for their child following a severe Acquired Brain Injury (ABI) in the United Kingdom

“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 of caring for their child following a severe Acquired Brain Injury (ABI) in the United Kingdom

“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 of caring for their child following a severe Acquired Brain Injury (ABI) in the United Kingdom

“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 of caring for their child following a severe Acquired Brain Injury (ABI) in the United Kingdom

  • 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 of caring for their child following a severe Acquired Brain Injury (ABI) in the United Kingdom

  • 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 of caring for their child following a severe Acquired Brain Injury (ABI) in the United Kingdom

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


Aims of the study

Thank you for listening. of caring for their child following a severe Acquired Brain Injury (ABI) in the United Kingdom

Do you have any questions?