PPIE Award Winner: Healing, Empowered and Recovering from Dysarthria (HEARD) Group
In this blog series we will be featuring our award winners and highly commended recipients from the Faculty’s ‘Outstanding Contribution to PPIE’ awards. Showcasing the inspirational and outstanding commitment to PPIE that has made a positive difference to our community and highlighting the amazing events, activities, people and groups from across the Faculty.
Our third blog in this series will feature the Healing, Empowered and Recovering from Dysarthria (HEARD) group, a group of Public Contributors who have supported research into dysarthria following stroke. HEARD won the Newcomer: Highly Commended category for the 2022 awards.
Dysarthria is when speech becomes less clear, becomes slurred or sounds different, and can happen after a stroke. This can be distressing and have a major effect on the confidence of those affected by the condition.
Limited research exists on dysarthria after stroke; existing studies measure different things, reducing the comparability of results. Therefore, to recognise which treatments are best, there is a need for studies to standardise which aspects of speech recovery are measured. This is called a core outcome set (COS).
COS-speech is a research partnership between The University of Manchester and the University of Queensland, Australia and is funded by NIHR (National Institute for Health and Care Research) and a Stroke Association Fellowship.
In order to identify what aspects of speech recovery should be measured and how, the COS-speech team are collating views of people affected by dysarthria after stroke as well as clinicians and researchers with expertise on the condition.
The HEARD group are key members of the research team who have lived experience of dysarthria, acting as advisors to help shape and manage the research. Created in February 2021, the group has contributed to the project at all stages.
They have questioned study processes to ensure they are suitable and appropriate and have co-developed participant documentation and outcomes to ensure ethical issues are considered. They are also developing a social media presence for the project that will continue to provide a source of information and support to those affected by dysarthria long after the research has ended.
Members of HEARD have also helped support the research team with understanding how dysarthria affects everyday life. Through a short video explaining dysarthria and the project, the HEARD team provides a clear description of and personal experiences with the disorder, resulting in clear understanding for viewers. Watch the informative video here.
So far, the project has completed its first round of surveys, inviting people from the UK and Australia to contribute. Round 2 of the survey will be conducted through October and November 2022, with a summary of findings and a finalised Core Outcome Set due to be delivered in March-May 2023.
The HEARD team has been vital to the development of the project and have been valuable in advising on and communicating about a less-known disorder such as dysarthria. Their contributions will pave the way for standardised measurement of dysarthria recovery, acting as an important stepping-stone to inform on the best treatments for the condition.
Find Out More:
- Dysarthria research COS-Speech
- Dysarthria Blog
- Living with dysarthria – Annette’s story
- Living with dysarthria – Claire’s story
- Follow Claire Mitchell on twitter.
- Follow Annette Dancer on twitter.
To read more about other PPIE Award winners visit here