From adversity into action, using your experience to help others
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- čas přidán 5. 09. 2023
- In this short film, Tash, John, Sharon and Amy, talk about what it is like to get involved in health research (sometimes called public involvement in research). Each shares their reasons for getting involved in research and what impact it has had on their lives. Tash, John, Sharon and Amy are all involved in mental health research projects funded by the NIHR and wanted to use this film to invite other people with experience of health problems to find out more about how they too could influence research.
This video was funded by the National Institute for Health and Care Research (NIHR) Three NIHR Research Schools Mental Health Programme
The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
Warning
Please be advised that this film includes references issues that viewers may find distressing, including trauma, bereavement and addiction. If you have been affected by any of the issues mentioned in this film, help is available:
With You wearewithyou.org.uk
ADHD UK adhduk.co.uk/support/
Contact - for families with disabled children contact.org.uk/
Cruse Bereavement Support www.cruse.org.uk/
If you would like to get involved in research, you can find out more here:
I want to help with research | NIHR www.nihr.ac.uk/patients-carer...
Really helpful resource - thank you!
I have Ehlers-Danlos syndrome too. Most medics don't know how to spell it or what it is! Treatment is poor to none existent. I signed up for research 6 or 7 years ago but there's been nothing suitable suitable or EDS related for me to get involved with. More research needs doing. Most people watching this won't have heard of Ehlers-Danlos syndrome. What was the learning outcomes of the research? What were the findings of the research? If others want to take part in research, who can they contact?
No visual disabled communities and people with language barriers
This is only a short film, so we couldn't cover everything in detail but I mention that I am physically disabled, and Tash talks about her neurodivergence and how we are both involved.
We didn't mention people with language barriers as one other issue among many, but we hope that the ethos presented shows that many people have been welcomed by the researchers we've worked with and we mentioned flexibility to meet participants' different needs. Most organisations will try to find out what needs people have and adapt. I've been involved with people with a huge range of learning disabilities, blind and deaf people and those with English as a second language and it's worked well on the whole, with patience, understanding, working out tech needs etc. and us all learning a lot from each other! I hope you or others you know would find that if you got involved in research that the groups organisers would try to meet the needs of all, though there are challenges and everybody needs to learn how to do things better. You could be the ones to help researchers with skills to do it even better because your own experience provides them with expertise!
Nothing about meeting the access needs of disabled people
This is only a short film, so we couldn't cover everything in detail but I mention that I am physically disabled, and Tash talks about her neurodivergence and how we are both involved. We hope that the ethos presented shows that we have been welcomed by the researchers we've worked with and we mentioned flexibility to meet participants' different needs. I hope you would find that if you got involved in research that the groups organisers would be equally inclusive. Good luck!