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

Abstract

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. 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. 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. Participants were an opportunistic sample of plwMND within England recruited via an open advert distributed by the MND Association (MNDA). 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. 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. What this paper adds What is already known on this subject 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. There is significant and growing interest in voice banking from the MND community, but there has been little supporting research. What this study adds This research is the first study of its kind to examine decision making surrounding voice banking. It shows how preserving identity is critically important in how people deal with a diagnosis of MND. 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. Those deciding against voice banking do not believe it could maintain their identity and cannot bring back the natural voice they once had. Clinical implications of this study The reality of using AAC and voice banking for communication may be poorly understood. It would be helpful for professionals to provide information about voice banking as part of a wider discussion about the range of options for communication as the condition progresses. It is important that this includes the opportunity to listen to a voice bank to support understanding of how it is used in a communication device, and how different it sounds to natural speech.