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.

Research output: Contribution to journalArticle


Background: Motor neurone disease is a terminal neurological illness with no known cure. It is often referred to as a ‘family disease’ with the ripples causing additional implications for children and young people. As such, little is known about how to best support young people (>24 years old (WHO, 2019)) when a family member dies from the disease. One potential solution is through use of a digital legacy whereby videos which document a person’s life, memories and achievements are purposefully recorded by an adult during their illness. However, due to this being an emerging area of research, little is known about whether a digital legacy may support or hinder bereavement for young people affected by the disease. Aim: To investigate healthcare professionals, specialists and experts views, perceptions and experiences of using digital legacies with bereaved young people due to motor neurone disease. Design: A qualitative study underpinned by Interpretative Phenomenological Analysis. Setting/Participants: Twenty healthcare professionals, specialists and experts were recruited using a maximum purposive sampling method. Open-ended interviews were conducted in participants place of work either over the telephone or by the lead researcher. Ethical approval was granted by a University ethics committee and Health Research Authority (HRA). Findings: Two key overarching themes were identified from the data; Perceived benefit and value for bereaved young people using a digital legacy and Challenges and barriers for bereaved young people using a digital legacy. Conclusion: A number of potential challenges and considerations were identified. However, the use of a digital legacy was perceived to be a feasible and valuable method of support for young people bereaved as a result of motor neurone disease.
Original languageEnglish
Pages (from-to)68-75
Number of pages8
JournalBereavement Care
Issue number2-3
Early online date20 Nov 2019
Publication statusE-pub ahead of print - 20 Nov 2019



  • digital legacy
  • motor neurone disease
  • bereavement
  • young people
  • healthcare professionals

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