Investigating Acceptability and Usage of Voice Banking for People Living with Motor Neurone Disease (MND)
- Conditions
- Motor Neurone DiseaseAnarthriaNeurological - Neurodegenerative diseasesDysarthria
- Registration Number
- ACTRN12624001020572
- Lead Sponsor
- Dr Lillian Krikheli
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- ot yet recruiting
- Sex
- All
- Target Recruitment
- 30
Study 1:
The Statewide Progressive Neurological Diseases Service (SPNDS) at Calvary Health Care Bethlehem (CHCB) provides specialist care for approximately 70% of plwMND across Victoria, Australia. Eligible plwMND will be identified using an existing Calvary Health Care Bethlehem voice banking clinical database to contact patients with MND who have already completed voice banking (and who consent to be approached for research as documented in the clinical intake form).
Study 2:
Speech pathologists and allied health assistants from three Motor Neurone Disease Clinics in Victoria (Calvary Health Care Bethlehem, Northern Health and Barwon Health) will be contacted via email by Calvary-based co-investigators to join the study. Former employees from Calvary Health Care Bethlehem (who were active clinicians in the voice banking clinic program during the previous trial period) will also be invited to ensure that an accurate representation of practices are captured.
Study 1:
- PlwMND not consenting to be contacted for research in SPNDS clinical intake form
- PlwMND with accompanying diagnosed Frontotemporal dementia (FTD). Cognitive change is common in MND and is not an exclusion criterion.
- Significant psychiatric disorder.
Study 2:
Speech pathologists and allied health assistants who have not completed any one of the following activities in the preceding 12 months to participation:
- providing informational counselling to people living with MND,
- voice banking recording, or
- download and set up to a speech generating device.
Study & Design
- Study Type
- Observational
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Reported acceptability of voice banking process[Semi-structured dyadic interviews with people living with MND (plwMND) and their carers, using a specifically designed interview schedule. At the time of the interview (cross sectional study).];Reported usage patterns of banked voice[Semi-structured dyadic interviews with people living with MND (plwMND) and their carers, using a specifically designed interview schedule. At the time of the interview (cross sectional study).];Identification of clinician factors influencing acceptability of banked voice.[Results from dyadic interviews and focus groups with speech pathologists and allied health assistants from three Motor Neurone Disease Clinics, using a semi-structured interview schedule. At the time of the interview and focus group (cross sectional study).]
- Secondary Outcome Measures
Name Time Method Identification of clinician factors influencing usage of banked voice. [additional primary outcome][Results from dyadic interviews and focus groups with speech pathologists and allied health assistants from three Motor Neurone Disease Clinics, using a semi-structured interview schedule. At the time of the interview and focus group (cross sectional study).];Reported differences in acceptability of voice banking in different populations of plwMND. [Semi-structured dyadic interviews with people living with MND (plwMND) and their carers, using a specifically designed interview schedule. After all semi-structured interviews with plwMND have been conducted.]