Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).

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Old 05-30-2013, 09:47 AM #1
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Default Call for participants for UK PCS research project

Note to administrators & moderators - I have been given approval to recruit participants for this study on the Neurotalk website - many thanks!

Invitation to be involved in a piece of research on the lived experience of mild TBI/Post-concussion syndrome in the UK.

Hi all,

This is an invitation to be interviewed for a piece of qualitative research into the lived experience of mild TBI/post-concussion syndrome in the UK. It is hoped that it will contribute to a better understanding of the effects of this condition amongst healthcare professionals, family members, employers, friends and others. One of the reasons I have chosen this forum to find participants is that as a member myself I have always found it to contain a great deal of thoughtful discussion.

My research is a ‘qualitative’ study, and its aim is to use in-depth analysis of the lived experience of a small number of people to shed light on what it is really like to experience post-concussional symptoms, and what effect it has on your ability to fulfil valued life roles. I hope that this will shed light on aspects of this condition which are not captured by the dominant approaches to its assessment, which generally centre around numbers produced by neuropsychological testing. I feel that the thoughtful contributors I often find on this forum will be ideal for this aim.

I am looking for people who:
Are resident in the UK
Are aged 18 or over
Have had a concussion/mild TBI
Have experienced at least three months of post-concussion symptoms

Note that you do not need to have been diagnosed with post-concussion syndrome by a health professional. If you had a concussion, and then suffered at least three months of symptoms which in your opinion were a direct result of that concussion, then I would like to hear from you. Previous research suggests that whether or not someone is given a diagnosis can have a big effect on their experience, and I would like to be open to exploring this factor.

The research is part of a Master’s degree dissertation in Neurological Occupational Therapy at the University of Coventry, UK. I will also be doing my best to have the results published in healthcare journals, and will post them here on this forum. Additionally, I will be consulting my participants regarding whether they would like me to share the research findings in other ways and formats, and if so what these should be. The aim is to educate as many people as possible, and to give participants a significant degree of control over the uses of the information that they have provided.

The purpose of the research is to allow others to better understand the experience of post-concussion symptoms. The interviews will be loosely structured, and going off on a tangent about something you think is important will be actively encouraged. However, to begin with the questions will focus on two particular areas of interest.

1. Any impact these symptoms had/have on your ability to carry out meaningful life roles.
2. Enabling or disabling effects of your environment, including the people and institutions with whom you come into contact.

The analysis of this data will be carried out by analysing interviews for themes. These interviews will be carried out by email – this is so that you can take as long as you like to read and re-read questions and to compose your response, rather than risk being overloaded by the demands of a conventional interview.

Your results will be anonymised (in fact there is no need for you to tell me your real name at any point in the process), any quotes from your interviews will be presented under a pseudonym and any identifying details will be altered.

If you are interested, please email me at bestn2 @ uni.coventry.ac.uk and I will send you a more detailed information sheet or answer any questions you have. This is a better way than replying to this thread saying you want to take part, as that might compromise your anonymity.

Hope that all makes sense – I’m happy to answer any questions if not!
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mTBI March 2011, spent around a year recovering.

Since recovery I have achieved a Master's degree with distinction in Neurological Occupational Therapy
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Old 05-30-2013, 09:59 AM #2
sospan sospan is offline
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Hi more than happy to help and share my experience and any medical info.

Will send you an email and PM shortly
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January 2012 tripped over a power cable and life has changed - memory, mood, balance and puzzled. Now how do I fix it ?
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Klaus (05-30-2013)
Old 05-30-2013, 01:23 PM #3
peacheysncream peacheysncream is offline
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Dear Klaus,
I have Emailed you and agreed to participate.
However I have very Strong feelings about my name not being disclosed here on this site. So please keep the two separate.

Many thanks Klaus.
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I am a 36 yr old female who has played football, as a hobby, for 13 yrs. In July 2012, during a game I was slammed to the floor by two angry guys who hit into me so hard that one of them broke their ribs.
This knocked me back onto hard ground leaving me unconscious. I awoke to chronic head and neck pain, sickness and the inability to see or balance.
The paramedics made me walk to the ambulance, instead of placing me on a spinal board, where I was taken to the ER. I was hospitalised with suspected brain hemorrhage for 1 week, then on complete bed rest for 1 month, in a wheelchair for 2 months.

I have been left with PCS, moderate constant head pain, little short term memory, no memory of the accident, balance and sight problems, depression and exhaustion.
The worst problem is collapsing regularly. This has finally been diagnosed as Hemiplegic Migraines , these cause my brain to regularly shut down when I am tired and I then feel the full effects of a stroke (without the bleed on the brain!!) of which the symptoms last 2-4 days.
I have had 6 CT's, 2 MRI's and am under 3 specialists.

I believe everyday is one more towards improvement. Mainly I believe in the power of acceptance not the weakness of complacency or resignation.
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Old 05-30-2013, 02:33 PM #4
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Brilliant! Thankyou both.

Don't worry peacheysncream, I will not be disclosing anybody's real name here or anywhere else - everything will be anonymised. This is just basic respect for people's privacy, but it's also one of the many conditions I've had to agree to in order for this project to be approved by my university's ethics committee.

Thanks again for taking the time to do this
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Since recovery I have achieved a Master's degree with distinction in Neurological Occupational Therapy
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Old 06-10-2013, 09:07 AM #5
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Hi all,

Just in case anyone didn't see this thread first time around, I'd be keen to involve a few more people. Email bestn2@uni.coventry.ac.uk if you are interested. Thanks!
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Old 06-10-2013, 09:44 AM #6
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Hi Klaus I am happy to assist you , particularly if it will help others in the future.

I have Emailed you.

Nine lives xx
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Old 06-10-2013, 10:30 AM #7
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Thanks Nine Lives, that's great!

Yes, the study is designed to help others by clarifying what people found to be enabling and disabling influences on their lives during PCS. Hopefully these insights can be used to provide more enabling and less disabling environments for others in the future. Thanks again!
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Since recovery I have achieved a Master's degree with distinction in Neurological Occupational Therapy
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Old 06-26-2013, 09:20 AM #8
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Bumping this thread one more time - hope that's not too annoying!

Though perhaps "bumping" is an inappropriate word to use on this forum

I can be contacted at bestn2@uni.coventry.ac.uk if anyone else is interested.

Thanks!
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Since recovery I have achieved a Master's degree with distinction in Neurological Occupational Therapy
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Old 06-26-2013, 02:53 PM #9
Mark in Idaho Mark in Idaho is offline
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Ouch, that hurt. Bumping into things is not good. LOL
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"Be still and know that I am God" Psalm 46:10
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