“It’s like saving for a rainy day”: perceptions of voice banking for people living with Motor Neurone Disease

This exploratory qualitative study examined how people living with Motor Neurone Disease (PlwMND) and their partners perceived voice banking and related voice preservation counseling within a specialist Australian service. Semi-structured interviews were conducted in 2022 with five PlwMND and two partners. Participants represented varying levels of engagement with voice banking, including individuals who had completed voice banking and those who had not commenced and therefore discussed voice banking conceptually. Participants described voice banking as a means of preserving identity and social connection, while also identifying uncertainty about timing, emotional readiness, and the practical demands of early action. Variable clinician knowledge, service navigation challenges, and confusion between voice preservation methods highlight the importance of informational counseling experiences. Findings are interpreted as reflections of participant perceptions at a specific point in time and within a single service context, rather than evaluations of current technological capability. The study highlights the importance of proactive, accurate, and staged informational counseling that reflects evolving voice preservation technologies and local service pathways.