End of life care for patients with Motor Neurone Disease (MND)
Research type
Research Study
Full title
Examining the impact of specialist palliative care services in end of life care for individuals with Motor Neurone Disease; A Qualitative Study.
IRAS ID
145156
Contact name
Colette Donaghy
Contact email
Sponsor organisation
Belfast Health and Social Care Trust
Research summary
Motor Neurone Disease (MND) is a progressive, neurodegenerative disease characterised by degeneration of the upper and lower motor neurones resulting in weakness and wasting of muscles. This typically leads to loss of mobility as well as difficulties with speech, swallowing and breathing. Survival is generally between 3-5 years. There is some evidence to suggest that good palliative care improves quality of life for patients with MND and their carer’s. Our principal aim is to establish the effect of specialist palliative care (SPC) input on end of life care in MND to ensure the needs of patients and their carers are appropriately addressed. We plan to use semi structured, audio recorded interviews with 2 groups of bereaved carers. Ten of the deceased will have received SPC input and 10 will have had no SPC input.
REC name
HSC REC A
REC reference
14/NI/1034
Date of REC Opinion
8 Sep 2014
REC opinion
Further Information Favourable Opinion