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Karen

Psychological distress after subarachnoid hemorrhage: Patient support groups can help us better detect it

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With many thanks to all of our members who kindly participated in this study.  Below is a very brief introduction or a taster to the article that now appears in the Journal of the Neurological Sciences 2014.

 

You will find the full article as an attachment below the introduction, which you will need to click on, to be able to read it in full.

 

The full article is 7 pages long, so it's quite lengthy and for me personally, I find it easier to print it off and read it, rather than reading from the computer screen.

 

I am still in contact with Dr. Noble and he thanks you all.  If you would like to leave feedback on this thread, then please feel free to do so.

 

Psychological distress after subarachnoid hemorrhage: Patient support groups can help us better detect it - Adam J. Noble & Thomas Schenk - Journal of the Neurological Sciences 2014

 

Introduction


One-quarter of subarachnoid hemorrhage (SAH) survivors develop psychological distress. This impedes recovery. Limitations to existing care pathways mean that distress often goes undetected. We need to know how to better identify it.
 
Support groups for SAH exist in many countries. No research has been conducted on them. Distressed
 
patients might be concentrated amongst them. If true, this could offer a low-cost way to help better identify distress. We conducted the first study to determine which survivors access such groups, their needs and compared them to the wider SAH population.
 
414 UK SAH survivors affiliated with national support groups were recruited. They completed a ques-
tionnaire, including validated measures of anxiety, depression and posttraumatic stress, and asked whether they had been examined or treated for distress post-SAH.
 
How then might we improve the detection of psychological distress in the SAH population? Establishing a new, working relationship between health services and the SAH patient support groups that already exist in many countries might be one way, without substantially increasing cost. Such groups are typically run by voluntary and community organizations. Examples include The Brain Aneurysm Foundation Support
 
Community in the US, Behind the Gray in the UK, and Schlaganfall-hilfe.dein Germany.
 
Acknowledgments
 
We thank the patients who participated in this study. We also acknowledge the invaluable help of the following patient groups for their assistance with participant recruitment: Behind the Gray, the Brain and Spine Foundation and Headway.

 

Click on the link below to download the file.

 

Noble &amp_ Schenk_&#39_14 Journal of Neurological Sciences.pdf

 

or if the above doesn't work, click on: http://fulltext.study/download/1913480.pdf

 
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It's been almost 20 years since I had my bleed and i still panic every time i have a even the smallest pain in my head.  I guess you can say im one of the lucky ones i survived with no noticeable problems. I am weaker on my left side but not much.

Im glad i found this site. I didnt know that there was anything like this.

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Hi Jo g,

 

After I had my SAH I was waiting to die and became down in myself,  but my daughter found this site and told me about it I was so pleased to know I wasn't the only one  lol xx 

 

Slow but surely I realised there is a life after SAH, so I got my smile back !! 

 

Welcome and I cant tell you anything you do not already know as you had yours before mine.  Being able to talk about it helps and give vent when you are on a downer etc xx.   So Welcome to BTG and Good Luck to you in all you do xxxx 

 

So many of us who had bleeds xxxx It helps in itself xx

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After my SAH followed by Vasospasm I did have a psycological exam in rehab.  Truth I said what I thought he wanted to hear pretty much thinking I didn't want to say anything that would extend my rehab stay.  I can say I didn't even really think about my emotional state for months after my event I kept saying I just want my life back.

 

I reached back to the hospital and rehab I had been in with no help.  They said their support groups were for people right after their stroke or for people not like me, but people who had more severe physical issues.  So I continued searching until I came across this group.  Now I live in the Boston area USA.  I was treated at one of the best neuro hospitals in the USA....

 

I am pretty sure I have some PTSD...I am fearful of being out of reach of the hospital that treated me.  I have done it, taken a couple of trips but I worry quite a bit about it and have dreams about it...I thought after the first trip it would lessen...it did not...

I think I could have benefited from a support group if one existed...I am struggling along, making progress but always feeling, I will never be quite the same.  

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Hi all.

My biggest fear is that if I fall and hit my head will it cause issues. I then worry so much.

 

I had such an incident recently and it was bad enough to warrant a CT scan.

 

Luckily it was fine, that was a close call, I've had a major fear of this since day one.

 

I have found that that are very few real life support groups for those of us that are many years in to recovery.

 

Sadly the one group nearby is isn't worth attending as it's not the type of support longers like us can contribute to, which is a shame.

 

One thing I've noticed is the medical teams are keen to wash their hands of us once we are able to cope better, but not fully able to cope without the close support of family and friends, if we have them that is!

 

There is a word for worrying needlessly so I'm told that word is inappropriate medical behaviour!

 

For the post above, Swishy, since you are US based you will already know one of the motto's used by  the US Marines, that is improvise, adapt and overcome. I use this myself when things get tough.

 

After all, each challenge is there to be beaten, one way or the other. When you do beat it and do so on your own, it may give you the boost in confidence to help you go even further.

 

My motto is. 

 

Tomorrow is a new day, what can I do? What will I do and how well can I do it!

 

Regards...

 

 

 

 

 

 

 

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I find singing happy songs and thinking how lucky I am to still be here really helps me !!

 

I cannot take sad stories or doom and gloomers, I don't mean us on here, I mean my Sister who loves to tell me her sad stories  arghhh  lol.

 

I find this site a great help, as we are told if you feel ill get in touch with your Doctor and hospital signs us off and we are in limbo.

 

So when we know we are not alone in this and people can help us smile again, this is when Behind the gray helps xxx 

 

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