Background Starting conversations about the end-of-life is known to be challenging for patients, families and professionals. The MyLife software contains a range of interactive therapeutic tools, including reminiscence abilities, social inclusion activities, and person centred, individualised “All About Me” passports. In addition, we are using the software to develop electronic life story memory books, that can be left as a legacy to loved ones. We are working with My Dementia Improvement Network to develop cloud-based storage to enable people’s families from around the world to be able to contribute to the memory book. We are linking in with the local hospital dementia lead nurse to use the cloud to enable patients to continue to develop their books whilst in the hospice, hospital or at home.
Aim We saw an opportunity for this software to be useful in facilitating preparation for the end-of-life for patients and families using our hospice services.
Method Equipment was funded using a Yorkshire Young Achievers bid in 2014. We have trained four staff members as “super-users”, by getting them to complete their own Life Story books.
Findings We have used the software with nine patients including a young man with Motor Neurone Disease who has two young children and a number of family members living abroad. Initial evaluation with staff, patients and families suggests that it provides an opportunity for conversations about memories, wishes, hopes and fears. We believe the intervention enables rapport to be built and has been reported as being therapeutic in its own right.
Implications We are working with the software designers to develop additional language capabilities to enable it to be used with different cultural identities. We intend to develop robust evaluation measures, such as patient perceptions, the impact of the MyLife content on bereaved family members, and enhancing staff understanding of existing networks.
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