What words do you use when talking about brain injury with children?

Hello,

I'm a doctoral student undertaking research that aims to explore children and families experiences of parental brain injury. In particular, I will be looking at the impact of a parent's brain injury on family functioning and children's wellbeing. I hope the research will lead to making recommendations about how to support the whole family following brain injury.

My research will involve interviewing family members of different ages. I was just wondering what words or phrases families with children use to describe brain injury? Do you call it a brain injury? Or something else?

I would really appreciate your help. I want to make the research as accessible as possible. I am hoping to interview families with children between the ages of 8-18, so any advice would be greatly appreciated.

Thank-you,

Clare

12 Replies

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  • I am a single parent of a 9 yr old who was 5yrs old when I sustained my Brain Injury. It was about 8 months on before it was classified as a severe BI validated by Neuro Psych testing and the circumstances of my GCS on admission to hospital, length of coma, post traumatic and retrograde amnesia etc. Initially I think I used to say my brain got hurt but now he is older we speak of my Brain Injury. I used books eg My Mum Makes the Best Cakes and My Parent has a Brain Injury etc to try to help him understand why I am a different mum now. He was very truamatized by what happened especially as he saw me go off in the ambulance with blues and two and then wasn't allowed to see me in intensive care while I was in the coma because I was the only one with parental responsibility to give permission but I couldn't because I was virtually already in a coma on arrival at hospital. He still finds it very hard to talk about it and I have to wait till he asks something to get his engagement to talk about it. Recently (nearly 4 yrs on) he asked me if it would hurt to die. When I questioned why he was asking, he said that he knew when I was in the coma the adults were all saying it was most likely I would die, and if I did then he had wanted to die so he could be with me so that's why he wanted to know if it would have hurt him if he had had to die too. That still makes me cry to think that he went through such troubling thoughts when I was ill. Services for anyone with a BI are few and support for children who have a parent with a brain injury are non existent. It has been all down to me to support him along with trying to manage my own recovery. He is still adversely affected by my Frontal Brain Injury/dysexecutive syndrome problems. Most professionals and adults do not understand so how is a child meant too. Family life is a struggle and the impact is huge.

  • I've said it before and I'll say it again , you're an amazing woman and very inspiring strawberryCream

  • Thank you daisymoes that is so kind of you to say so. xx

  • I have no children but am a uncle many times over, from babies to near teenagers.

    Children are quite accepting of reality. it's adults who tend to struggle as hopes/desires get in the way.

    I am quite upbeat, and though I answer what problems I do have, it is tempered by what could of happened!

  • Hi Clare, interesting work will be ken to see results. My kids were 5,10 and 12 at the time, 4 years on I know also have 2 step children. We have always called it brain injury and although in early days they worried if got very tired or struggled with things i think everyone is used to dad being a bit odd sometimes. All the kids laugh at me and take the mickey on occassion which i think is good. Step daughter said to a friend recently "he has got the brain damage but he's still pretty good at the Rubiks cube"

  • My children were 8 & 10 when I got ill. we have always used the words brain injury. It has been tough on them. At times they cope better than I could have imagined, especially when I limit what they can do eg I can't ride a bike any more so in school holidays I can't take them off on a long ride or I take them swimming but can't go in with them. However there have been times when they have wished their 'old mum' could come back. That makes me very sad. Thankfully my husband is great and we all support each other.

  • Hello everyone,

    I have been really overwhelmed by your responses. Thank you so much for sharing such honest accounts of such difficult experiences. There is a real gap in research regarding the experiences of children of parents with a brain injury - I found that most research looks at the experiences of spouses or parents who have a child with a brain injury. This is something that I hope to address and something that I feel really passionately about changing. It's helpful to hear that many of you use the term 'brain injury'. As I will be getting parent's consent before talking to any children, I will probably ask about their preferences. It is important to me that everyone that will be involved in the research feels as comfortable as possible, and that they are really listened to.

    Thank-you so much for all your help,

    Clare

  • My children were 8, 5 and 2 when I had my BI. My daughter was told I had been in a car accident and had a bump on my head which made me forgetful.

    It didn't take too long for them to realise I was not the same. My daughter found it very difficult to deal with, she ended up needing input from mental health people. She kind of had a triple whammy. Mum not able to do physical things, she became my dresser, sibling helper feeding dressing bathing etc when the family members had to return to work and before my oh could leave his work. We relied heavily on my childminder and friends as we were trying desperately to keep a roof over our heads and battling for support. When we became homeless and had to move over 300 miles away where we qualified for housing, we got input from abi team, children's advocacy, school and family support and I got a place in headway.

    As I got better my daughter found it hard to step back from that caring role, she identified as a carer and didn't know how to cope as I didn't need as much care.

    It was hard for them all in school and having people home, mum was more like a teen than other people's parents. Having to warn friends that sleepovers really meant sleeping, apologising to them when I screamed at them to go to bloody sleep at after midnight because I couldn't cope. Out bursts at parent evenings when trying to get help for my son in school because he wasn't getting what the OT/ peads had said was needed.

    Embarrassed by me but friends thought I was cooler than their parents.

    Not noticing when things got on top of her, feeling guilty when I found out she was cutting herself, back to cahms.

    My youngest doesn't remember anything. He's only known me as I am now. My eldest lad has disabilities of his own and doesn't remember anything of living down south.

    My brain injury took its toll on my family but thankfully moving to Scotland and getting help 2 years in saved my young family from going down the tubes.

    My daughter is in uni now, almost finished her first year. My eldest son is doing well in his exams.

    The ABI team worked so hard to find support for my family, it was new to them as most of their case load were older. They looked at every avenue. Young carers were fantastic. With help from school and family support, the kids were able to get help with homework. ABI team got us fanicial help that we had been turned down for too. Can't thank them all enough.

  • Hi Clare,

    I don't usually use any words when it comes to children because I don't really like thm, especially the ones that are brought up terribly like the ones you might see in The Harvester.

    However, if I did speak to a child about my problems, I might give them a short answer but I probably should say things like "I had something happen to me and it has made me slightly different to other people".

    Not totally different because that is not true. I am still the same person but am damaged... Like a car that has hit a wall :).

    Good luck with your research,

    MJ

  • Thankfully when it comes to bi I have no children but trying to explain to anyone can be a real pain.

    I have used the example that my life is like trying to play noughts and crosses in a blacked out room with black furniture and black dots on black paper. I know the dots are there but don't know how to find them or join them.

    In terms of communication difficulties at times I describe that as having to hunt the biggest car boot sale in Europe for 3things the size of 10p pieces and work out how to put them together just to answer a question.. And people wonder why we get tired!!!

    Another one is the good old computer crash. When it reboots some files are fine, some are somewhere completely random,some might be totally ruined but the computer sort of works. Different but the same and slower.

    Hope you can get something from this lot.

  • randomphantoms:

    Yes, trying to explain to anyone can be a real pain! I can't ever seem to do it right and think coz I don't LOOK injured = I mUST be lying/exaggerating. I don't blame them coz I was the same but when I realised my attitude probably hurt someone (with brain injury) I sought him out to say sorry and try explain and say I'd learned now = partly what set me off into wanting to educate others = Steve.

    You: the noughts and crosses & black and communication difficulties = hunt the biggest car boot sale in Europe = good descriptions!

    You: And people wonder why we get tired!!! YES YES YES!!! Need to teach them we AREN'T lazy!

    Yes, I use the old computer crash and needing a defrag. Yes, lost files, search loads but can't retrieve, corrupted files and out of date software.

    Yes: different but the same and slower. MUCH slower!

    I say it's like trying to do algebra (especially if NOT good at maths) while very drunk and after doing it ALL day every day. Feels like that to me. And can't EVER work out what x and y are or the solution. Fail. Can't. NUL. NOT our/my fault.

    And when ask people for info NEED = SO mean not to give straight truthful answer when COULD. Their choice? Based on WHAT info and what steps did they (try) take (if any) to check info using is TRUE? Best interests??? Now that's a REAL can of worms and WAY too tricky and often use (legally) lies and false info = MEGA bias...

    Who shouts loudest, what MOST people believe (and why?) = minorities' voices/thoughts outweighed by the 'norms' and conventions. Ooops getting off-track and muddled = stop.

  • Hi everyone, thank-you for these extra responses. Again, thank-you so much for your honesty. I am aware that sometimes support for families and/or children is hard to come by. This is something that I really hope changes in the future. It's the main reason that I chose my research question as it's an area that is really under-researched. Hopefully finding out more about other people's experiences can be one of the first steps in a positive direction.

    Clare

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