'Invest' in your voice: How a novel co-designed voice banking service supports people with MND
Tracks
6
Adult
Motor speech
Neurological disorders
Progressive disorders
Social communication
Voice
| Friday, June 13, 2025 |
| 11:45 AM - 11:55 AM |
Overview
Dr Lillian Krikheli
Details
⏫ Research insights
⏲️ 11.45am - 12.05pm
⌛ 20-minutes
📚 Assumed knowledge of attendees: Foundational (new/casual familiarity with the topic e.g. treated a single case)
⏲️ 11.45am - 12.05pm
⌛ 20-minutes
📚 Assumed knowledge of attendees: Foundational (new/casual familiarity with the topic e.g. treated a single case)
Presenter
Dr Lillian Krikheli
La Trobe University
'Invest' in your voice: How a novel co-designed voice banking service supports people with MND
11:45 AM - 12:05 PMPresentation summary
Objective
This project aimed to enhance the uptake and completion of voice banking for people with Motor Neurone Disease (plwMND) in a specialist service through the development of a co-designed framework. The framework was created with input from both plwMND and speech pathologists involved in delivering the intervention. The research examined attitudes and practices around voice banking before and after the implementation of the framework and evaluated changes in voice banking uptake within a specialist outpatient service.
Methods
A mixed-methods approach was used, starting with a database review to review change in voice banking completion rates, rate of uptake and time taken from diagnosis to recording. Additionally, a survey was conducted to understand the perspectives of plwMND on the new voice banking clinic model. Survey data were analysed using descriptive statistics and thematic analysis.
Results
The implementation of the co-designed voice banking (VB) framework in 2023 led to a significant increase in clinic referrals and improved timing in the voice banking process. In the new clinic model, referrals to complete voice banking significantly increased. Notably, the mean number of days between the date voice banking was offered and the date it was completed decreased by 88.01%, from 159 days to 19 days. Additionally, the time between diagnosis and the date voice banking was completed saw a median reduction of 72.73%, from 462 days to 126 days. These improvements highlight the effectiveness of the new framework in expediting the voice banking process for plwMND.
Conclusions
Early introduction of voice banking is crucial for ensuring that individuals with MND can use their own voices in text-to-speech technologies. Raising awareness of the importance of timely referrals to speech pathology at diagnosis is essential.
This project aimed to enhance the uptake and completion of voice banking for people with Motor Neurone Disease (plwMND) in a specialist service through the development of a co-designed framework. The framework was created with input from both plwMND and speech pathologists involved in delivering the intervention. The research examined attitudes and practices around voice banking before and after the implementation of the framework and evaluated changes in voice banking uptake within a specialist outpatient service.
Methods
A mixed-methods approach was used, starting with a database review to review change in voice banking completion rates, rate of uptake and time taken from diagnosis to recording. Additionally, a survey was conducted to understand the perspectives of plwMND on the new voice banking clinic model. Survey data were analysed using descriptive statistics and thematic analysis.
Results
The implementation of the co-designed voice banking (VB) framework in 2023 led to a significant increase in clinic referrals and improved timing in the voice banking process. In the new clinic model, referrals to complete voice banking significantly increased. Notably, the mean number of days between the date voice banking was offered and the date it was completed decreased by 88.01%, from 159 days to 19 days. Additionally, the time between diagnosis and the date voice banking was completed saw a median reduction of 72.73%, from 462 days to 126 days. These improvements highlight the effectiveness of the new framework in expediting the voice banking process for plwMND.
Conclusions
Early introduction of voice banking is crucial for ensuring that individuals with MND can use their own voices in text-to-speech technologies. Raising awareness of the importance of timely referrals to speech pathology at diagnosis is essential.
Refrences
Cave, R., & Bloch, S. (2021). Voice banking for people living with motor neurone disease: Views and expectations. International Journal of Language & Communication Disorders, 56(1), 116–129. https://doi.org/10.1111/1460-6984.12588
Preserving identity is central to decision making when considering whether or not to voice bank. For those choosing to voice bank, it is seen as an effective way of preserving their identity, a way of 'fighting back' and giving a positive psychological benefit.
Hecht, M., Hillemacher, T., Gräsel, E., Tigges, S., Winterholler, M., Heuss, D., Hilz, M.-J., & Neundörfer, B. (2002). Subjective experience and coping in ALS. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders, 3(4), 225–231. doi:10.1080/146608202760839009
Many people with ALS/MND have reported loss of speech as the most distressing aspect of the disease, considering it worse than loss of mobility or overall poor prognosis.
Brown, J., & Addington-Hall, J. (2008). How people with motor neurone disease talk about living with their illness: a narrative study. Journal of Advanced Nursing, 62(2), 200–208. https://doi.org/10.1111/j.1365-2648.2007.04588.x
As MND is a degenerative chronic condition, plwMND may see voice banking as a hopeful and achievable activity that could help them live their lives as best they can, of preserving as a far as possible and engaging in hopeful activities
Preserving identity is central to decision making when considering whether or not to voice bank. For those choosing to voice bank, it is seen as an effective way of preserving their identity, a way of 'fighting back' and giving a positive psychological benefit.
Hecht, M., Hillemacher, T., Gräsel, E., Tigges, S., Winterholler, M., Heuss, D., Hilz, M.-J., & Neundörfer, B. (2002). Subjective experience and coping in ALS. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders, 3(4), 225–231. doi:10.1080/146608202760839009
Many people with ALS/MND have reported loss of speech as the most distressing aspect of the disease, considering it worse than loss of mobility or overall poor prognosis.
Brown, J., & Addington-Hall, J. (2008). How people with motor neurone disease talk about living with their illness: a narrative study. Journal of Advanced Nursing, 62(2), 200–208. https://doi.org/10.1111/j.1365-2648.2007.04588.x
As MND is a degenerative chronic condition, plwMND may see voice banking as a hopeful and achievable activity that could help them live their lives as best they can, of preserving as a far as possible and engaging in hopeful activities
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Dr Lillian Krikheli is Lecturer in the Discipline of Speech Pathology with a particular interest in clinical laryngology and dysphagia management. Lilli's doctoral research was a multi-phase international consensus study investigating the role and practice of speech pathologists working in paediatric palliative care settings. Since then, she has continued to consult on projects that use Delphi methodology for clinical guideline development. Lilli is a certified practising speech pathologist (CPSP, MSPA) and her research is grounded in her ongoing clinical practice within the hospital environment.
The information contained in this program is current at of the time of publishing but is subject to changes made without notice.
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