I have recently finished developing an instrument (Dynamic Visual Analogue Mood Scales - DVAMS) to help assess mood in stroke patients who have communication problems due to aphasia, and now I need to validate it in a small sample of stroke survivors (< 5 years since stroke). My validation study involves a short (10-15 minute) online task, so can be easily administered either one-to-one using a tablet, or remotely (www.xvams.com).
I am currently approaching local community groups, but have found it hard to identify active online groups where I can recruit participants. I have tried The UK Stroke Forum, and other UK based groups like Speakability, but they do not seem very active. Does anybody know of any online communities further afield that are more active, and which may be supportive towards research in this area?
Absolutely! Kate Allatt stroke survivor and founder of the charity 'Fighting Strokes' runs a number of closed and open Facebook groups and also maintains a blog and website that stroke survivors contribute to and comment on.
Email Kate and tell her I suggested you contact her! I'm sure she'll be happy to help you reach stroke survivors further afield! She's also got a very large twitter following!
Email Kate at [email protected] or look for her on Facebook and ask to join her stroke online community groups.
Hi Thomas. Theological speculation about the causes of stroke is a long way away from my specialty area. My focus is on how best to assess mood in people with aphasia (where communication may be heavily impaired), and screen for depression after stroke.
There are few groups on Facebook - Stroke Coffee House comes to mind. This is not aphasia specific. You might try the National Aphasia Association and the Aphasia Hope Foundation. Both have websites and might be able to help you.
Thanks, Kristy! For the validation study, I need people who can still understand language (as the DVAMS will be validated against language dependent measures), so all of those groups are worth following up.
Simon Horton @UEA runs an Aphasia cafe in East Anglia. He may be worth consulting.
https://www.uea.ac.uk/health-sciences/people/profile/s-horton#researchTab
Thanks, Guy, although for the validation study I need stroke survivors whose language comprehension is mostly intact, as I am validating the scales against language-based ones.
Dear Paul - just a comment on Guy's post - I don't actually run the Aphasia Café, although one of my PhD students is helping facilitate the Café (which is an arms length service under the Norfolk ESD team) at the moment. I do however work with a very active group of stroke survivors with aphasia (Norfolk Conversation Partners) in teaching and research collaborations.
best wishes
Simon
Thanks Simon. Though my scales are designed primarily for people with aphasia, I am validating them against a language-based instrument, so need people whose language comprehension is intact. But the scales might be of interest to you and your group as a preview of what will hopefully become a validated instrument. The prototype is at www.dvams.com.
Suggest you try Different Strokes and ARNI who have younger stroke survivors as members but worth approaching the Stroke Association too.
Thanks Jane. The UK Stroke Forum is an offshoot of the Stroke Association, and I have an ad posted with them. I just approached Different Strokes recently following a lead elsewhere: For a small admin fee/donation, they post adverts for researchers on their private Facebook group, and they have just done this for me today! Thanks for the input.
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