Leaving an oral history or legacy is something that can be important to those with life limiting conditions. Our team works with people with communication difficulties who rely on AAC systems to communicate and I (Nicola) was curious to investigate what services are available for people with life limiting conditions to leave a legacy for friends and families. I have had client’s that have left letters and planned their funerals using AAC systems that family have found subsequent to their death. I have also had requests that family copy information that is stored on the systems to remember the person by. However, I had felt that I was unable to support or guide people to services if they do want to leave something for their friends and family, so I went to find out more.
My self and our team’s clinical psychologist met with the organiser from a local hospice, who coordinate a team of volunteers who support people with life limiting conditions to create an oral history for friends and family. This service has been running since 2013 when it was set up as part of a research project by the University of Sheffield and Macmillan Cancer Support.
The Macmillan service will support people referred to their service to create an audio recording. They do this in a number of different ways and will be guided by the individual. They offer an interview, desert island discs, personal histories and memory boxes. They use a crib sheet, but it is very much what the person wants to talk about and the facilitator just offers encouragement.
To do this, the service uses high quality recording equipment, funded by donations, the microphones on the system are small and frequently the person will forget that they are using them. Recordings can be done either on site or at the person’s home. They need a quiet room and the service will offer emotional support. The service then uses software called “audacity” to edit the audio together – so that the person does not need to do it in one go. The service reported finding that the process can be beneficial for the person as a reflective exercise.
The Macmillan service have discussed using video with clients – however feedback so far has been that this would not be positive, including for reasons that the person could see physical changes in themselves. This may change in the future as younger people live their lives through social media.
Once completed, the person signs a consent form for who they want to access the recording. A CD is produced or people can have it in a digital format. They can also consent to have the recording saved with the University of Sheffield as part of the research project to develop a growing oral social history to help future generations connect with real people from the past. There is very little other research on the topic of leaving oral histories and legacies by people with life limiting conditions. The research reported benefits for the participants and the importance of it being their voice.
Legacy using AAC
The service in Sheffield does support people with communication difficulties and have found that this takes more planning. They did have one person referred to their service who used a communication aid, but following discussions this person did not follow through as she felt that the voice was not hers.
I now feel that I can discuss and offer sign post to services that will enable our clients to complete this, if that is what they want to do. It is a very personal thing and is not for everyone. When possible it should be offered prior to deterioration or loss of speech, but this is not always possible. The hospice now feels that the local AAC service can support them if they have issues support people who use AAC to access the service. For client’s using AAC it may be a matter of leaving the information in other ways such as in writing, videos, photographs as well as through their communication aid. If you work with people using AAC I would urge you to offer and support people to enable them to leave a legacy behind and not be held back by their communication issues.