The palliative care needs of people with motor neurone disease (MND) and their informal care givers

Motor neurone disease (MND) or Amyotrophic Lateral Sclerosis (ALS) is a neurodegenerative disease which has a sudden onset, rapid progression and brings with it the potential for complex and disabling symptoms and care needs. It is currently without cure, with the average time between diagnosis and death being two to three years. The progression of symptoms and subsequent onset of disability are likely to occur over weeks and months rather than years. A need for palliative care arises early in the disease trajectory. Historically, however, whilst a palliative care approach has been routinely adopted for care of patients with primary brain tumours and brain metastases, it has been less recognised as an approach relevant for patients with MND or other neurodegenerative disorders. This picture is now changing and the rapid progressive nature of MND, the need for anticipatory planning, regular re-evaluation of symptoms and the central role of carers are being seen as highly relevant to the specialism of palliative care. With this comes recognition that palliative care should be initiated early in the disease process rather than waiting until near the end of life, with the involvement of palliative care specialists to help with advanced planning and symptom control.

Given the emphasis on the importance of palliative care for people with MND, it is vital to understand the palliative care needs of patients and their carers in order that services can be configured to reflect these needs. There is currently an identified gap in synthesised knowledge in this area. The methodologies associated with qualitative research enable individuals’ perceptions and experiences about their illness and their care needs to be established. Systematic reviews of qualitative research enable an existing body of qualitative research to be bought together to develop new insights and identify research gaps. The approach is particularly relevant to a palliative care population, as synthesising qualitative research allows maximum value to be gained from primary studies that have overcome problems in accessing and researching vulnerable groups.

The review will identify the palliative care needs of patients who have MND and their carers, as a result of bringing together existing qualitative research in this area in a systematic way.

Funding

Funders: 

Marie Curie

Motor Neurone Disease Association

Start Date: June 2017
End Date: August 2018

Members

Internal Staff

External collaborators

Public Health and Society Research in the Department of Health Sciences