title: 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.
authors.affiliation: Specialist Palliative Care Team, Coventry and Warwickshire Partnership NHS Trust.
authors.forename: Susan
authors.initials: S
authors.lastname: Bergin
authors.affiliation: Senior Research Fellow, Warwick Medical School, University of Warwick.
authors.forename: Carole
authors.initials: C
authors.lastname: Mockford
mesh_terms: D017028:Caregivers; D006301:Health Services Needs and Demand; D006701:Home Nursing; D006801:Humans; D016472:Motor Neuron Disease / Q000451:nursing*; D011788:Quality of Life; D012944:Social Support
keywords: amyotrophic lateral sclerosis; caregivers; informal carers; motor neurone disease; support services; systematic review