Investigating Acceptability and Usage of Voice Banking for People Living with Motor Neurone Disease (MND)

Project consists of two parts. (1) Semi-structured interviews: A total of 15 people living with Motor Neurone Disease (plwMND) and their carers will attend a dyadic interview and be allocated to one of three study arms based on the type of communication mode they use: - Five plwMND (+carers) who have banked their voice, still use verbal communication and do not require a speech generating device yet - Five plwMND (+carers) who are dysarthric, have banked their voice and do choose to use a speech generating device with their banked voice - Five plwMND (+carers) who are dysarthric, have banked their voice and do not choose to use a speech generating device with their banked voice Using quota sampling, researchers will ensure there is adequate within-group representation of MND onset-types and ages. Interviews will either be conducted in-person or via Zoom (participants can nominate a preference based on their location). A semi-structured interview schedule will be used with questions that relate to experiences and affective attitudes of plwMND when receiving informational counselling and hearing/utilising their synthetic voice. All participant groups in this phase will be given the interview schedule in advance to provide an opportunity to prepare responses; advantageous for plwMND who are anarthric and do not have an efficient mode of communication. Composing words, sentences and messages through alternative communication system is typically slower than natural speech production. Giving participants an opportunity to pre-prepare responses will allow more time in the sessions to ask follow up questions to explore themes raised by the participants. The anticipated time for interviews will be 45-60 minutes.Sessions will be audio/video recorded depending on the format chosen by the participant. Questions for all participants will include asking them to describe their experiences with the voice banking process from start to completion, what supports they received during the voice banking process, how they feel about the sound and quality of the banked voice compared to their original natural voice, how acceptable is the banked voice for use in a speech generating device, and to describe how the banked voice is used (or how they anticipated using it). For the group that choose not to use their banked voice, they will be also be asked why they they made the decision not to use the banked voice after recording. PlwMND will be given the opportunity to provide member checking (also known as participant or respondent validation), to explore the credibility of results. The transcript will be returned to participants to check for accuracy and resonance with their experiences as a way of having control over the final product. Once finalised, identifiable information will be redacted to commence analysis. (2) Focus groups with speech pathologists who support plwMND: Two focus groups will be completed with speech pathology teams who provide support to plwMND to complete and use voice banking. Speech pathologists and allied health assistants from three Motor Neurone Disease Clinics in Victoria will be invited to participate in focus groups to investigate clinician factors that may be impacting acceptability and usage of a banked voice for a person living with MND. The anticipated time for focus groups will be 60 minutes. Focus group 1: Speech pathologists employed at Calvary Health Care Bethlehem who utilise the newly trialled clinic model (initiated in earlier phases of the larger project). This will be conducted in hybrid mode with people face-to-face and off-site. Focus group 2: Speech pathologists at (1) Northern Health and (2) Barwon Health MND clinics who do not employ a formal voice banking clinic model. Speech pathologists will be asked to describe the process of supporting a plwMND to bank their voice from start to finish, how they learnt to support a plwMND to complete voice banking, what are common queries or comments that they receive from PlwMND and their carers about the sound and quality of the banked voice (and how do they address these?),. Additionally, they will be asked questions about the degree speech pathologists may influence or support the acceptability of a banked voice to plwMND and their families and whether speech pathologists influence or support the usage patterns of a banked voice to plwMND and their families. A semi-structured interview schedule will be used with questions that relate to how clinicians support plwMND when providing informational counselling, recording and facilitate utilisation of their synthetic voice.