Giving Voice to Experience: A Users’ History of Augmentative and Alternative Communication

Interviewing people with MND, caregivers and family of people with MND to learn about their lived experiences with communication aids. 

The purpose of this study is to create a user history of Augmentative and Alternative Communication (AAC), also known as communication aids. By conducting oral history interviews with people who use AAC and familiar communication devices, the researchers aim to create a history which focuses more on the realities of people’s lives whilst using these devices, and accessing related services (charities, NHS, speech and language therapy, for example), rather than just relying on the official documents from the government and charities.

This research will be useful for people with MND and anyone using AAC devices as it could improve the quality of care provided by healthcare professionals. Allowing speech therapists and other medical professionals to follow their service users after they are no longer looking after that element of their care, which can help build a better understanding of how to improve the care they provide. 

The researchers aim to widen their reach to anyone using AAC devices in order to build a more comprehensive history of people who are using this technology at different stages of their life. This will aid the development of AAC devices and make them more accessible to all ages. 

Lastly, the researchers hope the process for people with MND and people they regularly communicate with, is useful for sharing their memories and experiences and that they find it an empowering experience. It is something for their families to listen to and interact with before and after their loved one has died.