The aim of this study was to investigate the views and experiences of people living with motor neurone disease (MND) creating a video based digital legacy to pass on to a family member. The study consisted of 4 people living with the disease, and 3 young people who had been bereaved and had access to the legacy. The study found the creation of the legacy provided a sense of purpose for people with MND and for the bereaved family member a sense of comfort, once they had reached an appropriate place within their grief journey.
Clabburn, O. et al. 2019. The use of digital legacies with people affected by motor neurone disease for continuing bonds: an interpretive phenomenological analysis study.
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