Health-Related Quality of Life

Abstract

Background: Motor neurone disease (MND) remains universally fatal despite the introduction of disease-modifying therapy in the form of the glutamate inhibitor, riluzole. Caring for people with MND presents enormous challenges, many of which are particular to the disease complex. An understanding of the carer burden is required in order to inform the delivery of palliative care to MND patients and their carers.

Aim: To explore the experiences and perceptions of carers and former carers of people with MND with emphasis on the later stages of the disease.

Participants and Methods: Focus groups were conducted with two groups of former carers and one group of current carers recruited through the Motor Neurone Disease Association of NSW. Recruitment continued until no new themes emerged. The discussions were taped, transcribed verbatim and content analysed.

Results: There was a clear thematic trajectory from diagnosis through to death and bereavement with ramifications evident for the delivery of palliative care. Unmet emotional needs and the unremitting and all-encompassing nature of care were emphasised, as was the importance of love in sustaining the carer.

Conclusions: The experience of caring for a person with MND has a lasting psychological impact which may outweigh the physical and financial costs of care. This relatively unexplored area of enquiry lacks adequate models on which to base quantitative investigation. This qualitative study provides a starting point for future research.