The role of hope in those recovering from an Acquired Brain Injury

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

https://staffordshire.qualtrics.com/jfe/form/SV_ebav1UMfqlsMdqC

You can contact me at h024852k@student.staffs.ac.uk if you have any questions.

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The questions where utterly bizzare for a stroke hope assessment!

Maybe deep psychology? Intuitively no understanding

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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

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I know
I was surprised that there was no comment field anywhere to actually put it in the research qnr

thanks for the email I might actually send them one
ciao

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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.

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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.

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Yes, I shouldn’t bother, it just gave me a headache in the end.

I emailed the author with some feedback as well.
if anybody is interested what I said I can post it here .
I introduced it as “feedback in the interest of improving care that we received”

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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.

Regards Sue

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Yeah if we’re taking the topic of questionnaire design then compound questions are a no-no unless designed with a deep understanding of the use of multiple questions to filter bias coincidental responses etc etc. They certainly didn’t seem to be any subtlety to questions to tease out underlying trend through multiple responses

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Here you I @Loshy

"Hi
I did your questionnaire.
It was under the heading (contextual anchor) “the role of hope after abi”.

I hope you’ll find a little feedback useful - motivated by a desire to improve the quality of care available to us.

I’m left with the impression that either there is deep meta understanding of psychology in the questions or a void of understanding of the realities an ABI introduces. the suspicion at the moment is that your question source hasn’t got the first inkling of a clue about the dynamics of (in our case) a stroke warriors (survivor’s or family member’s) journey.

I know from discussions on the stroke association forum that at least one other person just gave up because the questions are unrelatable to any even peripheral understanding.

There scene setting in the stem of the questions reflects a lack of reality about one’s life situation as caused by the abi, and none show relevance - for example altered emotional state of those around one.
Also: You’ve got no "does not apply”, ” no opinion” or even “wtf?” answer available.

our journeys and those of our family members around us aren’t in any way expressible through your questions .

A question such as ”do you focus on the aspirations and life goals that you had pre-abi" would seem to this lay-man to open the avenue of exploration to either " are you realistic" or " are you very determined" or " was your ABI non invasive to your outlook on your goals"

If you want a view of hope you might get orientation from watching this:

It’s extremely narrow in there it’s only one perspective - it’s on a different planet from your questions. Other stroke warriors would recognise elements of its content even if not agreeing It included expression of all the dimensions of their journey & included elements that were irrelevant to them.

I suppose your questionnaire begs the question "does the respondent have to understand the basis upon which the questions were picked in order to be able to give answers that convey something meaningful to the researcher?” My suspicion is the contextual framing of both answer and question have to have overlap else there’s no shared meaning and therefore there can be no capture and conveying of a semantic basis on which a conclusion can usefully be drawn from a conversation if the partys speak different languages

Ciao Simon
"

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Hi Everyone,

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 :slight_smile:.

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!

Dan

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Hi Ingo,

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.

If you’re interested there’s more information about shaping research here.

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Are you criticizing?
It seems implied

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.

Dan