The use of digital legacies with people affected by motor neurone disease for continuing bonds: an interpretative phenomenological analysis study

Clabburn, O, Knighting, K, Jack, B.A and O’Brien, M.R (2019) 'The use of digital legacies with people affected by motor neurone disease for continuing bonds: an interpretative phenomenological analysis study.' Palliative Medicine. doi: 10.1177/0269216319845805

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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) and 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’.

Item Type:	Article
Keywords:	motor neurone disease, MND, amyotrophic lateral sclerosis, ALS, digital legacy, bereavement, continuing bonds, interpretative phenomenological analysis
Divisions:	School of Sciences
Date Deposited:	02 May 2019 10:26
Last Modified:	15 Aug 2021 09:52
ISSN:	0269-2163
URI / Page ID:	https://researchspace.bathspa.ac.uk/id/eprint/12175

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