Voice banking for people living with motor neurone disease: Views and expectations

Abstract

Background: More than 80% of people living with MND (plwMND) develop difficulties with their speech, affecting communication, self-identity and quality of life. Most plwMND eventually use an augmentative and alternative communication device (AAC) to communicate. Some AAC devices provide a synthesized voice for speech, however these voices are often viewed as impersonal and a factor in AAC acceptance. Voice banking creates an approximation of the person's own voice that can be used in AAC and is argued to go some way to preserve a person's identity when natural voice is lost, but there has been little supporting research. Aims: To understand what plwMND consider when deciding whether or not to bank their voice, what their expectations are, and the expectations of significant communication partners. Methods: Semi-structured interviews were undertaken with plwMND who had either decided to bank their voice or had decided not to. Thematic analysis was used to provide a qualitative analysis of the data. Procedures: Participants were an opportunistic sample of plwMND within England recruited via an open advert distributed by the MND Association (MNDA). Outcomes and Results: Twelve plwMND were interviewed with nine significant others. Nine participants had decided to bank their voice and three decided not to. The data suggest 'preserving identity' is the overarching motivation in decision making for voice banking. Participants who decided to voice bank considered it would help to maintain their identity and preserve their social and work networks. Participants deciding not to bank their voice highlighted it could not replace their natural voice or preserve their identity. However, few in either group showed an awareness of how a voice bank is used in AAC, and how communication using AAC is significantly different to natural speech. Conclusions and Implications: This research is the first study of its kind to examine the considerations for decision making around voice banking for plwMND. Preserving identity is central to decision making when considering whether or not to voice bank. However, the reality of using AAC and voice banking for communication is poorly understood. Professionals have a role to provide plwMND with more information about voice banking in the wider context of using AAC for communication. It may be that the process of voice banking itself is seen as a positive act for plwMND, independent of how it is used later. Further research with associated professionals and stakeholders is indicated.

Effects of Self-similarity and Self-Generation on the Perceptual Prioritisation of Voices

“…acoustic) familiarity of that voice, persisting through the cloned voice timbre, still enables an enhancement of perceptual prioritisation. This is promising for individuals with motor neuron disease seeking to use a bespoke synthesised voice for social interaction (Cave & Bloch, 2021). Future research should further investigate the impact of self-generation by directly comparing the SPEs for recorded and cloned self-voices.…”

“…However, if a person's cloned voice is as self-relevant to them as their self-voice, it could offer great benefits to individuals with motor neurone diseases who are losing capacity for speech motor control (Cave & Bloch, 2021). Beyond perceptual biases brought by bone conduction during speech production (Maurer & Landis, 2009;Orepic et al, 2023), the memory of self-generated information is also an important factor of selfrecognition as a proof of our identity (Mulligan & Lozito, 2004).…”

Legacy in paediatrics: A concept analysis

“…Voice banking is a process by which an individual (often someone expected to lose the ability to speak) records themselves saying words, phrases, or sentences, with the intention of being able to play back the recordings later using assistive technology. A patient may feel this intervention will not preserve their legacy and personal identity, while a friend or significant other disagrees (Cave & Bloch, 2021). For those who choose to bank their voices, it is noted family and friends may have an easier time identifying someone's unique mannerisms and catchphrases than the affected person themselves does (Costello, 2016).…”

The BCH message banking process, voice banking, and double-dipping

“…For people with a neurodegenerative disease such as ALS, speech loss is difficult because of not only the dramatic change to communication independence but also the threatened loss of identity (Cave & Bloch, 2021). Just as each individual's fingerprint reveals their unique biological identity, voice is an acoustical fingerprint (Costello, 2000), central "in the expression and continual (re)construction of personal and social identity, and in forming and maintaining social bonds" (Nathanson, 2017, p. 75).…”