Research News Last updated 23 May
There are calls to ensure people who stammer are included in the decision-making process when it comes to research around the condition.
It’s part of a Birmingham City University (BCU) research project into how intervention and support services can be improved.
The survey questions have been developed by people who stammer, to help researchers find topics of study that will allow for real-world improvements.
“Stammering can have lots of different impacts on a person, so there are many different types of intervention and support that aim to enhance, enrich, or improve the lives of people who stammer,” said researcher and Speech and Language Therapist, Barbara Moseley Harris.
“Lots of the questions we ask in research are chosen by professionals who may not stammer themselves. It's rare for people who actually stammer to make these decisions.
“I want to turn this on its head, by asking adults who stammer what they think we should be researching and taking my lead from them. I don't want to waste people's time by researching something that isn't useful or relevant.”
Joanne, one of the project advisors, who has spoken about living with a stammer, explains why she wants fellow stammerers to take part: “This survey is a way to make sure that your voice shapes the future of research: what’s looked at, what’s funded, and how support is offered.
“Every question in the survey has come from people who stammer, and it’s been reviewed by others with lived experience, so it reflects real concerns and priorities.
“If you’ve ever felt like research doesn’t speak to your experiences, this is a chance to change that. What matters is that research into stammering reflects the full range of voices and experiences, and that can only happen if people take part.”
The research is being supported by The Dominic Barker Trust which funds research into stammering as well as providing practical support.
Vice Chair and Trustee of the charity, Eleanor Barker, said this sort of research is vital: “By asking stammerers themselves what they believe the research priorities should be, this project is putting the views of people who stammer at the centre of the research agenda.
“This will help shape stammering research and direct funds to projects which address issues which are of real importance and can make a positive impact on the lives of people living with a stammer. "