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

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 languageEnglish
JournalBereavement Care
Publication statusAccepted/In press - 19 Aug 2019

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Motor Neuron Disease
expert
Disease
Delivery of Health Care
Bereavement
experience
Research Ethics Committees
Telephone
Workplace
Research Personnel
Interviews
illness
Health
Research
WHO
telephone
family member
video
moral philosophy
human being

Keywords

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

Cite this

@article{df29f9727a414061bd0fb126be1f74f9,
title = "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.",
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.",
keywords = "digital legacy, motor neurone disease, bereavement, young people, healthcare professionals",
author = "OLIVER CLABBURN and KATHERINE KNIGHTING and BARBARA JACK and MARY O'BRIEN",
year = "2019",
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language = "English",
journal = "Bereavement Care",
issn = "0268-2621",
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T1 - 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.

AU - CLABBURN, OLIVER

AU - KNIGHTING, KATHERINE

AU - JACK, BARBARA

AU - O'BRIEN, MARY

PY - 2019/8/19

Y1 - 2019/8/19

N2 - 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.

AB - 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.

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