The use of digital legacies with people affected by motor neurone disease for continuing bonds: An Interpretative Phenomenological Analysis study

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Abstract

Background: Motor neurone disease is a progressive neurodegenerative disease without cure. Little is known about how young people are affected when a family member has the illness and subsequently dies, resulting in a gap in understanding of how best to support them. One psychotherapeutic approach involves creating a legacy to pass onto the young person, but little research has investigated the use of an emerging format, digital legacies, where videos document a person’s life, memories and achievements.
Aim: To investigate the views, perceptions and experiences of digital legacies with people affected by motor neurone disease.
Design: A qualitative study underpinned by Interpretative Phenomenological Analysis.
Setting/Participants: People living with motor neurone disease (n=4), bereaved young people (n=3) in the United Kingdom. Open-ended interviews were conducted in person. Ethical approval was granted by a University ethics committee.
Results: Five key themes emerged exemplifying mutual challenges and benefits for people with motor neurone disease and bereaved young people. Creating a digital legacy provides a sense of purpose for people with motor neurone disease and a way to convey personality and life experiences. Bereaved young people can modify disease-related memories of the person and gain comfort from hearing and seeing videos.
Conclusion: This study expands the existing continuing bonds model of grief to include an ‘autobiographical chapter’, creating ‘The Model of Reciprocal Bonds Formation’.
Original languageEnglish
JournalPalliative Medicine
Early online date26 Apr 2019
DOIs
Publication statusE-pub ahead of print - 26 Apr 2019

Keywords

  • Motor Neurone Disease
  • MND
  • Amyotrophic lateral sclerosis
  • ALS
  • digital legacy
  • bereavement
  • continuing bonds
  • interpretative phenomenological analysis

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