Tuesday 21 January 2020

Article: Digital legacies with people affected by motor neurone disease

Little is known about how to best support young people (24 years and under) when a family members dies form motor neurone disease.  One potential solution is through use of a digital legacy whereby videos which documents a person's life memorial and achievements are purposely recorded by an adult during their illness.  This study aimed to investigate whether this supports or hinders a young persons' bereavement.  Twenty healthcare professionals, specialists and experts were recruited and interviewed in their work place or by telephone. It found the use of digital legacies to be a feasible and valuable method to support young people bereaved as a result of motor neurone disease.

Clabburn, O. et al.  2019. Digital legacies with people affected by motor neurone disease: The views, experiences and perceptions of healthcare professionals, specialists and experts for use with bereaved young people. Bereavement Care; 2019; vol. 38 (no. 2-3); p. 68- 75.

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