Investigating the views and experiences of using a digital legacy with people affected by Motor Neurone Disease (MND) [Best Oral Presentation: Peer Reviewed]

Research output: Contribution to conferenceLecture

Abstract

Motor Neurone Disease (MND) also known as Amyotrophic Lateral Sclerosis (ALS) is a terminal neurological disease with no known cure and an average survival of 2-5 years from symptom onset. The disease is insidiously progressive causing degeneration of motor neurones and ultimately affecting voluntary muscle movement throughout the body. Often this includes paralysis of the muscles involved with articulation resulting in severe communication problems. Palliative care is therefore a crucial aspect for families and those diagnosed with MND/ALS. One palliative care intervention for terminally ill patients is called Dignity Therapy (DT). This is a brief psychotherapy which encourages people at the end of their lives to reflect and record their past experiences and memories. With the assistance of a therapist, a written legacy is created from audio-recorded transcripts to be passed onto their family for when the patient has died. This project is investigating the use of an alternative type of legacy; a digital legacy. An overview of the research and intended procedure will be outlined in this presentation.
Original languageEnglish
Publication statusAccepted/In press - 18 Jun 2015
EventFoHSC Post-Graduate Research Student Symposium - Edge Hill University, Ormskirk, United Kingdom
Duration: 18 Jun 2015 → …

Conference

ConferenceFoHSC Post-Graduate Research Student Symposium
CountryUnited Kingdom
CityOrmskirk
Period18/06/15 → …

Fingerprint

Motor Neuron Disease
Amyotrophic Lateral Sclerosis
Palliative Care
Brief Psychotherapy
Terminally Ill
Motor Neurons
Paralysis
Skeletal Muscle
Communication
Muscles
Survival
Research
Therapeutics

Cite this

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title = "Investigating the views and experiences of using a digital legacy with people affected by Motor Neurone Disease (MND) [Best Oral Presentation: Peer Reviewed]",
abstract = "Motor Neurone Disease (MND) also known as Amyotrophic Lateral Sclerosis (ALS) is a terminal neurological disease with no known cure and an average survival of 2-5 years from symptom onset. The disease is insidiously progressive causing degeneration of motor neurones and ultimately affecting voluntary muscle movement throughout the body. Often this includes paralysis of the muscles involved with articulation resulting in severe communication problems. Palliative care is therefore a crucial aspect for families and those diagnosed with MND/ALS. One palliative care intervention for terminally ill patients is called Dignity Therapy (DT). This is a brief psychotherapy which encourages people at the end of their lives to reflect and record their past experiences and memories. With the assistance of a therapist, a written legacy is created from audio-recorded transcripts to be passed onto their family for when the patient has died. This project is investigating the use of an alternative type of legacy; a digital legacy. An overview of the research and intended procedure will be outlined in this presentation.",
author = "Oliver Clabburn and Mary O'Brien and Barbara Jack and Katherine Knighting",
year = "2015",
month = "6",
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language = "English",
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Investigating the views and experiences of using a digital legacy with people affected by Motor Neurone Disease (MND) [Best Oral Presentation: Peer Reviewed]. / Clabburn, Oliver; O'Brien, Mary; Jack, Barbara; Knighting, Katherine.

2015. FoHSC Post-Graduate Research Student Symposium, Ormskirk, United Kingdom.

Research output: Contribution to conferenceLecture

TY - CONF

T1 - Investigating the views and experiences of using a digital legacy with people affected by Motor Neurone Disease (MND) [Best Oral Presentation: Peer Reviewed]

AU - Clabburn, Oliver

AU - O'Brien, Mary

AU - Jack, Barbara

AU - Knighting, Katherine

PY - 2015/6/18

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N2 - Motor Neurone Disease (MND) also known as Amyotrophic Lateral Sclerosis (ALS) is a terminal neurological disease with no known cure and an average survival of 2-5 years from symptom onset. The disease is insidiously progressive causing degeneration of motor neurones and ultimately affecting voluntary muscle movement throughout the body. Often this includes paralysis of the muscles involved with articulation resulting in severe communication problems. Palliative care is therefore a crucial aspect for families and those diagnosed with MND/ALS. One palliative care intervention for terminally ill patients is called Dignity Therapy (DT). This is a brief psychotherapy which encourages people at the end of their lives to reflect and record their past experiences and memories. With the assistance of a therapist, a written legacy is created from audio-recorded transcripts to be passed onto their family for when the patient has died. This project is investigating the use of an alternative type of legacy; a digital legacy. An overview of the research and intended procedure will be outlined in this presentation.

AB - Motor Neurone Disease (MND) also known as Amyotrophic Lateral Sclerosis (ALS) is a terminal neurological disease with no known cure and an average survival of 2-5 years from symptom onset. The disease is insidiously progressive causing degeneration of motor neurones and ultimately affecting voluntary muscle movement throughout the body. Often this includes paralysis of the muscles involved with articulation resulting in severe communication problems. Palliative care is therefore a crucial aspect for families and those diagnosed with MND/ALS. One palliative care intervention for terminally ill patients is called Dignity Therapy (DT). This is a brief psychotherapy which encourages people at the end of their lives to reflect and record their past experiences and memories. With the assistance of a therapist, a written legacy is created from audio-recorded transcripts to be passed onto their family for when the patient has died. This project is investigating the use of an alternative type of legacy; a digital legacy. An overview of the research and intended procedure will be outlined in this presentation.

M3 - Lecture

ER -