Research participation requests are sent to the Stroke Association from external research institutions (e.g. universities and hospitals).
We conduct checks on these before promoting but are not involved in their running. This means we cannot comment on trials and have no affiliation with them.
Staffordshire University
What is the study about?
My name is Emily and I am interested in finding out what can predict a sense of hopefulness for people after they have experienced a brain injury (including stroke).
What will it Involve?
The study involves completing some questionnaires that will ask you about your age, your gender, your brain injury, your experiences of working towards goals you have set, and your experiences of shame, blame and guilt.
Who can take part?
People who are over the age of 18 that have had an acquired brain injury (including stroke).
If the injury was mild, please wait 3 months post injury to take part. If it was severe, please wait 12 months.
Unfortunately, you are unable to take part if you are under 18, have a degenerative condition (such as multiple sclerosis, Parkinson’s Disease or dementia), you have a terminal illness, or if you require a translator.
You must also have the mental capacity to make informed decisions regarding your participation.
How Can I Register my Interest?
You can find out more about the study and take part by clicking the link below
Hi Simon, thanks for feeding back on the study. We post thes eon behalf of researchers, so Emily won’t check this page, but you can contact her with any questions or feedback at h024852k@student.staffs.ac.uk
I gave this a go and gave up. Completely agree with @SimonInEdinburgh. Not something I can recommend to anyone who is actually trying to live though the aftermath of a stroke.
That’s exactly what I thought too Simon and I have emailed Emily to explain why it not suitable for people with brain injuries or strokes.
The research document wasn’t actually designed for viewing on a computer or either which adds to problem . . . . particularly for anyone with aphasia or eyesight issues.
I’m afraid her course supervisor may have let her down somewhat when reviewing it prior to going out, they certainly could only have given it a cursory glance over. The use of slang in such questionnaires is a no-no, it read more like the questionnaire you’d see in a trendy teenagers magazine. The second half of the questionnaire was 15 of the same question in a variety of different scenarios, with too many wordy answers to choose from.
Such a shame, I was keen to participate until I read the comments from our contributors, so I will be giving this one a miss. I have taken part in quite a few research questionnaires and research projects since my stroke 6 years ago,
, always keen to help with research going forward.
This study seems to have been a massive conversation starter!
I’m Dan, the Research Involvement Lead at the Stroke Association. I support collaborations between people living and working with stroke, where everyone works together to shape research (different to taking part in research trials like this post, but I also help with these).
With this in mind it’s been interesting to see your comments about the study possibly not having a full understanding of the realities of having been affected by stroke, or being designed to reflect the needs of people completing these.
Involvement is really helpful for making sure studies are designed this way and I’ll reccommend collaborating with people affected by stroke in future to the researcher if they haven’t done so this time.
We fully support and welcome feedback to researchers. This improves studies and can lead to unexpected beneficial outcomes. We don’t have the capacity to check through the many studies that come to us. This means your comments are how we understand people’s experiences of taking part (we’re delighted so many of you do, as it supports research to develop real life benefits).
It’s also really important though that advice and comments sent directly to researchers are respectful and constructive. Treating everyone with respect and kindness helps everyone work together to support future research and the possible benefits, with more chance of seeing comments taken on board.
Please do remember when you’re emailing researchers that you’re contacting real people who have put a lot of work into studies, so will massively appreciate help and advice, but it can feel demoralising and personal if comments aren’t given in a way that is considerate and kind, as we’d all like .
Thank you again for your feedback, it’s essential for understanding experiences and how the design of future studies can get the most out of interesting and beneficial topics!
Do let me know if you have any questions, sorry for this very long reply!
I’ve left a fuller response at the bottom of this thread but just to say we’d love to be able to check through each participation request, as we know how important these are to research and what a service everyone does who takes part in these.
Unfortunately we don’t have much capacity to do this. I support the rest of the Research Team with these by checking some essential for the many requests we get in and making sure they are clear to people, but we aren’t able to go through what the studies involve and support researchers to make improvements.
The way we do support this is by encouraging all researchers to meaningfully involve people affected by stroke in designing research and trials as equal collaborators, something we call Research Involvement. This helps to make better trials (amongst many other benefits) as people affected by stroke have collaborated in their design.
Hi Simon, not criticizing at all, sorry if it came over that way. I wanted to make it really clear that your feedback and comments are really beneficial to researchers and to us and to thank you all for letting us know you didn’t feel the study was helpful. It’s vitally important that your experiences and skills can shape better research.
We review ethics confirmations and the wording of all requests that come though us, but don’t have the chance to go through how the trials look in practice. Your comments mean we can understand how these work for people and help the researcher to understand where design could and should be better. Active collaborations are even better and something we encourage all researchers to develop.
The researcher had a few emails through for this, with a lot of helpful comments, but some of which she found quite upsetting and that they went beyond critique or contrustructive criticism. I don’t know exactly what these said, who or which these were, so wasn’t implying criticism of anyone. I also totally understand and emphathise that it’s frustrating when trials don’t seem to understand real needs and experiences.
That need for open communication and collaboration so we can all shape better research together is why we care about supporting the conditions for that to happen. That’s why I want to affirm our belief that feedback has the most impact on research changes and benefit when it is constructive, kind and based on mutual respect.
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