Recommendations to support informal carers of people living with motor neurone disease

Abstract

Informal carers are increasingly providing specialist care at home for people living with motor neurone disease. The carers may experience significant deterioration in their quality of life as a result of the physical and psychological burden they undertake. This systematic review seeks to provide evidence-based recommendations to enable healthcare professionals to support carers appropriately to maintain their wellbeing and to continue providing care at home. Inclusion criteria included articles focusing on the experience of informal carers of people with motor neurone disease, particularly when reporting on their perspective of professional services. Twenty-three studies were included and a thematic analysis was undertaken. Four key recommendations were identified: providing support, early access to palliative care, information regarding availability of services, and offering carers training for using specialist equipment. These recommendations offer healthcare professionals practical, cost-effective suggestions to improve existing services.