Abstract
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 language | English |
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Pages (from-to) | 68-75 |
Number of pages | 8 |
Journal | Bereavement Care |
Volume | 38 |
Issue number | 2-3 |
Early online date | 20 Nov 2019 |
DOIs | |
Publication status | E-pub ahead of print - 20 Nov 2019 |
Keywords
- digital legacy
- motor neurone disease
- bereavement
- young people
- healthcare professionals
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Investigating the use of digital legacies with people affected by Motor Neurone Disease (MND): An Interpretative Phenomenological Analysis
CLABBURN, O. (Author), O'BRIEN, M. (Director of Studies), JACK, B. (Supervisor) & KNIGHTING, K. (Supervisor), 26 Mar 2018Student thesis: Doctoral Thesis
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