Male experiences as a family member of a person in a prolonged disorder of consciousness

[ClinPsyConnor]

Hi Everyone,

I am a trainee Clinical Psychologist planning a research project that will be exploring the experiences of male family members of people who have a prolonged disorder of consciousness within the UK.

People who have a family member with a disorder of consciousness after a brain injury can face many challenges. The aim of this research is to better understand this experience, which may help us consider what support may most help families in this situation.

Before conducting this research, I wanted to reach out to the Headway community to get some initial insight on a brief summary of this research from anyone with a similar lived experience themselves:

This research will involve arranging interviews with male family members/close friends who have experience of having someone close to them with a prolonged disorder of consciousness. These interviews will have some questions to guide the discussion, but will be led by the interviewee and what they feel is important.

I would welcome any thoughts or feedback on this planned research and on the following areas I planned to discuss within each interview:

1) What do you understand about prolonged disorder of consciousness and what does this condition mean to you?

3) What is visiting them like for you?

4) How do you see things being in the future?

5) What have you done to cope with this situation?

6) What do you think might be important for other people in your position to know and do, to help them cope?

7) Is there anything we haven't talked about what you think is important?

Any thoughts or feedback on this research would be greatly appreciated.

Imagine if you were to participate - would you find this an acceptable way to explore this experience?

Thank you for any thoughts on this - This will help us check the research is being conducted in an appropriate way and focusing on areas relevant to those with lived experience.

All the best,

Connor

[Nafnaf87]

Hello Connor

I am 57 year old bloke who banged his head (RTA) 18 May 1998 resulting in Diffuse Axonal severe brain injury, Glasgow Scale 8.

I always thought my experience ongoing might be useful to help others in the future. However nobody was very interested, not the rehabilitation unit at Clatterbridge, not the Brain Injury Service in North Wales nor a very eminent consultant at Walton Hospital - basically I was abandoned. I have stumbled on for 25 years and at last right now am getting good input anand help from the Brain Injury Service.

in the immediate aftermath of my accident I lost my wife and business (2 pubs) and my family took me back. We had a family business and I made good progress at home and work as my father put in excellent support.

Unfortunately he passed about 6 years ago and over 3 years my remaining brother managed to persuade my mother to get rid of me - I lost my home and business for a second time.

I have looked and asked for help everywhere a vulnerable person is supposed to. That help was unavailable from any direction, indeed the state was complicit in removing me from my home for trespass. Mention the word family and everybody scattered and all government and non-government institutions that are supposed to help hid behind Covid.

I stumble on trying to make sense of it all having been abandoned repeatedly over many years.

If I can be of any help would be delighted

Kind regards

Michael

[ClinPsyConnor in reply to Nafnaf87]

Hi Michael,

Thank you for sharing your story - your experience shows the wide reaching impact brain injury can have, beyond the injury itself. I am glad to hear you are finally getting good input and help from the brain injury service, after such a long and challenging journey.

At this stage, I am just gathering some informal feedback and thoughts on the research proposal from those with lived experience, to add to our understanding of what this unique experience is like, building on what has already been reported in past research and to see whether it resonates as a meaningful area to explore further. I appreciate yours and others eagerness to share, so I will keep in mind the HealthUnlocked forum as we move forward.

Sounds like you are aware of some of the support services available, however I wanted to share them in case they are helpful for you:

Headways’ free and confidential helpline and further information (headway.org.uk/supportingyo... rain-injury/).

The Coma and Disorders of Consciousness Research Centres resources for families

(cdoc.org.uk/publications/re... titioners/).

Brain Injury is BIG telephone Support, online forum and further information for families affected by severe brain injury

(braininjuryisbig.org.uk/hel....

Thank you for your thoughts - It is much appreciated.

All the best,

Connor

[Plenty]

I'm thinking having a family members experiences with a person of prolonged disorder of consciousness is a different subject to dealing with a person with a traumatic brain injury?

Sounds like a great subject.

[ClinPsyConnor in reply to Plenty]

Hi Plenty,

Thank you for your thoughts - Glad to hear you feel this is a meaningful subject to research further!

Yes you are correct, following a traumatic brain injury a small number of people will develop a condition known as a disorder of consciousness. Disorders of consciousness have been defined into three distinct states; coma, vegetative state and minimal conscious state.

When in a coma, the person is not awake and not aware. This is usually acute and short term. When unconsciousness lasts for more than four weeks after a sudden onset brain injury, the person is described as having a prolonged disorder of consciousness (PDoC).

As you stated, for families and close friends this experience can be different to dealing with someone with a traumatic brain injury, often due to the ambiguous situation in which the person lacks consciousness but is still alive. This research aims to help build the limited literature around this unique experience.

All the best,

Connor

[philbou]

hi connor

Family and loved ones are the ones left to deal with the aftermath when the nhs help stops

Tbi and its effect are so very much a long term injury

They deserve a long term solution

Unfortunately the nhs thinking is that of after 6 months you don't improve and it plans its care around that myth

There are so many people on here ready to dispel that hypothesis

the truth is that after the 6 months a year at the most you are cast out and after that unless your rich thats your lot

People don't have the resources for any further improvement

They don't have the access to it either and what they need is often denied and withheld by poorly educated gps

Don't even get me started on referrals and waiting times

With any head injury you see the very best and the very worst of the nhs

Everyone improves with continuous rehab

The trouble is its not continuous

And the number one factor behind that is money and resources ultimately its not funded no matter what they say

[ClinPsyConnor in reply to philbou]

Hi Philbou,

Thank you for sharing your experience and thoughts on this - It highlights to me the challenges families and loved ones face when navigating health and social care provisions and seeking funding for long-term care and rehabilitation after that initial care is received. Which as you suggest, appears to be part of a larger systemic issue around a lack of funding, resources and understanding within the NHS to provide this.

Thanks for your thoughts.

All the best,

Connor

[mysterytour]

Hi Connor, it would be helpful to understand what you mean by prolonged disorder of consciousness?? I experienced a traumatic brain injury and was GCS 3 so had to be resuscitated a number of times - really interesting experience including minimum conscious state stuff. My hubby basically did all the aftercare with support..I didnae know it was night or day.. happy to hear more though.. thanks so much, Kiran

[ClinPsyConnor in reply to mysterytour]

Hi Kiran,

Thank you for sharing your experience and thoughts on this - Here is a brief explanation around prolonged disorders of consciousness from my research proposal I hope is helpful for your question:

Following a traumatic brain injury, a small number of people will develop a condition known as a disorder of consciousness. Disorders of consciousness have been defined into three distinct states; coma, vegetative state and minimal conscious state (Royal College of Physicians, 2020). When in a coma, the person is not awake and not aware. This is usually acute and short term. When unconsciousness lasts for more than four weeks after a sudden onset brain injury, the person is described as having a prolonged disorder of consciousness (PDoC).

When in a vegetative state, the person is in a state of wakefulness without awareness, meaning they have periods of time when their eyes are open and when they appear to be sleeping, but without self- or environmental awareness. In a minimally conscious state, the person is in a state of wakefulness with minimal awareness, meaning they demonstrate a degree of interaction with their surroundings and therefore limited self- or environmental awareness.

All the best,

Connor

[mysterytour in reply to ClinPsyConnor]

Thanks so much Connor for taking the time to explain this further - its really helpful to understand. I know that some of the brain injury conferences (via Headway & Scottish Head Injury Forum) I've been to in Scotland previously have highlighted some of these issues and raise awareness. There may be contacts via SHIF that could offer some advice or guidance too as you're probably in touch with Headway already. I wish you every success with your work. Best wishes for 2023, Kiran 😃

[Violet-flame]

what a useful research project this sounds. However, I’m wondering why only male relatives? I would very much like to participate as the wife of a man who has been living with TBI for 24 years. In my experience there’s been no support for my hubby or myself.

My twin sons might be up for sharing their experiences of having a dad with a TBI. I will pass on your questions to them if you like.

Best of luck with your research.

Violet

[ClinPsyConnor in reply to Violet-flame]

Hi Violet,

Thanks for sharing your experience and thoughts on this - I am pleased to hear you feel this research project will be useful!

The reason I am looking at male family member experiences is because the limited past research exploring this unique experience has typically focused on female family caregivers. I am focusing on male experiences to try and broaden this and see if past findings are transferable to the experiences of male family members too. Hopefully this will add to a broader look into the experience of the whole family and the different family roles such as partner/brother/son/father/close friend etc.

Thank you for considering your twin sons, any thoughts on the research would be much appreciated. I am not currently recruiting participants for the study itself, but shall also keep in mind the Healthunlocked forum when I reach this stage and if I appear to be lacking participants from my other sites.

All the best,

Connor

[Charlie15]

Hi Connor I’m a wife/carer of my husband who had a tbi in July 21 during Covid for me it wasn’t a nice experience I felt alone going to visit on a set time no one else could go in. He was in hospital for 3 months and rehabilitation for 3 months, in this time I spoke to one consultant in that time I felt and still do feel like he was just a number I got to ask questions 14 months later which that wasn’t good enough I needed to know what to expect when he came home , what to do help with his rehabilitation. He is still suffering with sleep problems which I have spoke to gp and asked on here for advice. If you need any more help I am willing to answer. My husband has memory loss and hoping will come back soon

[ClinPsyConnor in reply to Charlie15]

Hi Charlie,

Thank you for sharing your experience on this - This highlights to me how isolating this emotional and challenging experience can be, without consistent and appropriate support and understanding from healthcare professionals.

Wishing you and your husband all the best in the future - I will keep in mind the healthunlocked forum as an important resource for feedback from those with lived experience as the research develops.

All the best,

Connor

[Writeronstack]

HI Connor

You wanted to see if your questions make sense - this is a page showing how stress manifests in caregivers - maybe will give you a few pointers. Hopefully this will help.

msktc.org/tbi/factsheets/st...

Wish you very good luck with your study.

[ClinPsyConnor in reply to Writeronstack]

Hi Writeonstack,

Thank you this page is looks very useful to help shape my questions, understanding and provide an additional page to signpost participants to if needed.

Thanks again - much appreciated.

All the best,

Connor

[New_beginning]

Is there an age limit. Our son 18 this summer, he was nearing 15 when Dad/my husband sustained TBI. It was during COVID march 2020 we did all nursing /rehabilitation at home alone/isolated 16days coming off life support, June 2022 my husband received support from headway.

[ClinPsyConnor in reply to New_beginning]

Hi New_beginning,

Thanks for sharing some of your experience - Sounds like an emotional and challenging journey for your family, especially during COVID. Glad to hear your husband is now receiving some support from headway.

The age limit is 18 and another key criteria is that the potential participant has had a family member or friend who had a diagnosed prolonged disorder of consciousness, I have put a brief explanation of this below:

Following a traumatic brain injury, a small number of people will develop a condition known as a disorder of consciousness. Disorders of consciousness have been defined into three distinct states; coma, vegetative state and minimal conscious state.

When in a coma, the person is not awake and not aware. This is usually acute and short term. When unconsciousness lasts for more than four weeks after a sudden onset brain injury, the person is described as having a prolonged disorder of consciousness (PDoC).

When in a vegetative state, the person is in a state of wakefulness without awareness, meaning they have periods of time when their eyes are open and when they appear to be sleeping, but without self- or environmental awareness. In a minimally conscious state, the person is in a state of wakefulness with minimal awareness, meaning they demonstrate a degree of interaction with their surroundings and therefore limited self- or environmental awareness.

Currently I am not recruiting for the study itself, but I have found all the feedback and thoughts very helpful, and will bare in mind the Healthunlocked forum for recruitment if needed when I am at this stage.

All the best,

Connor

[New_beginning in reply to ClinPsyConnor]

All the best Connor and to your peers studying across these difficult subjects

[skydivesurvivor]

dad satay my bedside for a month whilst I was in a coma. Supported my me and mum despite them having lost my 2 elder sisters as babies!! Tolerance was astonishing!! A very loving dad!!