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My experience of the Stuttering and Cluttering Research Conference as a Youth Panellist: Why you should get involved.
Last Friday, at the 14th Oxford Stuttering and Cluttering Research Conference, a dream of mine was fulfilled, to help children and young people (CYP) who stammer have their questions about stammering research answered.
Attending the Oxford Stuttering and Cluttering Research Conference and being a part of the James Lind Alliance (JLA) Priority Setting Partnership (PSPs) highlights the wonderful work of Action for Stammering Children and the incredible opportunities available in the Youth Panel, including the chance to influence future research into stammering.
The JLA is a non-profit making initiative bringing together the people. This includes people who are affected by a condition, for example CYP who stammer, also parents/guardians/carers and the professionals who work with them. The JLA PSPs ‘identify and prioritise unanswered questions’ that the group agree to be most important. The result is list of the top ten research priorities – questions. They then take these questions to researchers and funders of research, who have the ability to action it (James Lind Alliance, 2025).
Furthermore, I had the pleasure to learn about ‘withVR’, who were the conference sponsors. They use virtual reality of speaking situations to research and also help speech and language therapists!
At the conference, I was very excited to meet like-minded people who cared and devoted themselves to projects, research, businesses and careers uncovering the answers of pertinent questions about stammering. It was incredibly powerful to be in one of the top research centres in the world!
My day started with the excitement of seeing dozens of scientific posters of research already being done into stammering! It was then time to deliver the presentation with the CEO of Action for Stammering Children, Dr Ria Bernard. The title was ‘Shaping the future of childhood stammering research: a JLA PSP’. We shared the process of the PSP – which had involved CYP who stammer, relatives, friends and professionals contributing to two online surveys and a final in-person workshop – and the findings: the top ten research priorities into stammering.
As a member of the PSP steering group, I had attended the final workshop in Central London. Along with 20 other CYP, parents/guardians and professionals, we had spent the day ranking the shortlisted 25 questions into the final top ten research priorities! I had also been involved earlier in the process with conducting a thorough evidence search alongside Professor Kate Watkins and Dr Ria Bernard. This was to check if the questions asked by respondents in the online surveys: 1) had not been answered by stammering research yet; 2) had been answered, but not effectively conveyed to communities of CYP who stammer, relatives, carers and professionals.
Highlights of my day at conference included meeting individuals from all over the world, including people who stammered, people conducting research into stammering, speech and language therapists and more often than not both or all three! It was special to be in a space where they were dedicated to representing stammering.
These top ten research priorities have shown researchers and funders of research, the important and critical questions that CYP who stammer want answered! This will increase the research evidence about stammering, for example what actually causes it, the most effective forms of speech and language therapy, is stammering affected by different emotions. It is a change in the narrative of stammering research, where for the first time, with the JLA PSP, the opinions and perspectives of those who stammer are being seriously considered and will shape research available to CYP who stammer, those who know them and work with them, in the current generation and future generations – to change the lives of people who stammer.
You can find answers to some of the most frequently asked questions about stammering by taking a look at our Support Hub Knowledge Articles
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