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Motor Neurone Disease (MND) is a neurodegenerative disease with a sudden onset, a rapid progression, a profile of complex disabilities and fatal consequences. Caring for a person with MND is an unremitting commitment, yet little research has examined the experiences and needs of carers for palliative care and bereavement care.

This study explored the experiences of MND family carers, both during their time as carers and following bereavement. Particular attention was paid to the carers’ prolonged grief status and to the implications for service delivery, including palliative care.

A qualitative approach consisted of interviews with 16 bereaved family carers. The Prolonged Grief tool (PG-13) measured the carers’ prolonged grief.

sixteen family carers participated in the study, between one and four years after the death of their spouse from MND in Western Australia.