Launching of the Top 10 Research Priorities in Stammering at UCL

Hilde Hofslundsengen and I was lucky to be invited to the launch of the Top 10 Research Priorities in Stammering at University College London arranged by the Action for stammering children in the United Kingdom.

 

The Top 10 research priorities were a result of a James Lind Alliance Priority Setting Partnerships that aimed to bring the person who stammer and his or her family, caregivers and clinician groups together and decide on priorities for future stammering research.

The project included in total three steps; first two surveys and a workshop. 146, 180 and 22 participants took part in each steps respectively. The scope focused on children and youth up to 25 years. Participants were recruited through newsletters, word of mouth, social media, events and clinical waiting rooms.

The results were as follows:

 The Top 10

1. What are the most effective forms of speech therapy for children and young people who stammer to give the best long-term outcomes?
2. How can parents and family members best support children and young people who stammer? How can parents and family members best be trained and supported to do this?
3. How can teachers in schools best support children and young people who stammer? How can teachers best be trained and supported to do this?
4. What are the emotional and psychological impacts of stammering on children and young people who stammer (e.g. low self-esteem and depression)? How are these best treated and supported?
5. What causes children to develop a stammer in early childhood?
6. Are other brain-related conditions (for example autism and ADHD) linked to stammering? What impact do these have on stammering?
7. What impact does stammering have on children’s and young people’s performance at school? How does this affect their prospects for further training, education, and employment? What forms of support would be of most help?
8. What is the most effective therapy and support for very young children who stammer (pre-school)?
9. What triggers stammering to increase in children and young people in different situations e.g. anxiety or excitement? How is this best managed?
10. How does a child’s emotions and personality affect the impact of a stammer? Does helping a child to manage their emotions reduce the stammer and its impact?

 

Ria Bernhard, the chief executive officer of Action for stammering children presented the priorities and the 2 1/2 years of work process behind them. Thereafter, a panel discussion took place. The Panel discussion focused on the impact of the Priority Setting Partnerships for researchers, funders, and the stammering community and was conducted by Kate Watkins, Professor of Cognitive Neuroscience, University of Oxford, Phoebe Avbulimen, ASC Youth Panel and member of the partnership steering group, Rebecca Maeso, Assistant Director, James Lind Alliance (NIHR). In the panel discussion it was raised several questions, e.g. possible differences in prioritisation across individuals who stammer depending on age, stammering severity and life situations were discussed. It was clarified that children and youth who stammer mainly was interested in outcome, e.g. how to make friends, succeed in jobs, interviews etc. while parents were most interested in support. Other interesting comments raised were “what is meant by the most effective treatment program”? and “What defines the focus of the therapy and what defines the best outcome as it will probably be different for different people”? The panel discussant answered these questions and underlining that the nature of the method used for the Top 10 prioritization is shared rankings –listening to all the participants different perspectives and it will be up to researchers to define and describe the different variables.

The panel discussion was followed by a Workshop to reflect on the priorities presented and how they can be put on the research agenda and translated into research. We were lucky to collaborate with Hope Kightley and Sarah Millard from the Michael Palin Centre, Jessica Lane from Royal College of Speech and Language Therapists, and Zhuxung Yang from University College London.

We had some nice discussions related to ongoing studies and future ideas.

Finally, there were a Networking reception with the possibility to continue the conversation. We got the possibility to talk to many nice people both people who stammer, practitioners, and researchers. I found the research on brain imaging by Dr Charlie Wiltshire from Bangor University in Wales interesting, and we decided to keep in touch regarding features of stammering.  

Unfortunately, we did not get the chance to talk to Professor Pete Howell, but we will hopefully get the chance another day during our stay here.

In the evening, we celebrated the priorities and our stay at UCL with colleagues with an absolute fantastic dinner at Darjeeling Express. Thanks for a lovely day and a lovely meal!

 

Kari-Anne