The aim of this study was to investigate the views and experiences of people living with motor neurone disease (MND) creating a video based digital legacy to pass on to a family member. The study consisted of 4 people living with the disease, and 3 young people who had been bereaved and had access to the legacy. The study found the creation of the legacy provided a sense of purpose for people with MND and for the bereaved family member a sense of comfort, once they had reached an appropriate place within their grief journey.
Clabburn, O. et al. 2019. The use of digital legacies with people affected by motor neurone disease for continuing bonds: an interpretive phenomenological analysis study.
Available online
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Showing posts with label Motor Neurone disease. Show all posts
Showing posts with label Motor Neurone disease. Show all posts
Thursday, 19 September 2019
Thursday, 2 May 2019
Article: Palliative care for patients with motor neurone disease and their bereaved carers
This study examined the end of life care for people with motor neurone disease (MND) in Northern Ireland and the role of specialist and general palliative care. 13 bereaved carers of patients who had died 3 - 24 months previously with a diagnosis of MND were recruited to the study. The study found variations in the levels of holistic care provided, with unmanaged respiratory and psychological symptoms causing the most distress. Many patients had shown great reluctance to engage with specialist palliative care services, although for those who did, it was felt to be of great benefit.
McVeigh, C. 2019. Palliative care for patients with motor neurone disease and their bereaved carers. BMC Palliative Care, online,
Available to download
McVeigh, C. 2019. Palliative care for patients with motor neurone disease and their bereaved carers. BMC Palliative Care, online,
Available to download
Saturday, 16 March 2019
Article: Palliative care in motor neurone disease: where are we now?
The article discusses the role of palliative care in motor neurone disease. Guidance includes the telling of the diagnosis to the patient and family, assessment and management of symptoms, consideration of interventions, such as gastrostomy and ventilatory support and care at the end of life.
Oliver, David. 2019. Palliative care in motor neurone disease: where are we now? Palliative Care: Research and Treatment, p 1- 14 online.
Access article here
Oliver, David. 2019. Palliative care in motor neurone disease: where are we now? Palliative Care: Research and Treatment, p 1- 14 online.
Access article here
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