Family carers’experiences of caring, palliative care and bereavement: An exploratory study in motor neurone disease

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’ grief and to the implications for service delivery, including palliative care.

Sixteen family carers participated in the study one to four years after the death of their spouse from MND in WA. Face to face interviews with the bereaved family carers were conducted and the Prolonged Grief tool (PG-13) was used to measure the carers’ prolonged grief.

The thematic analysis of the interview transcripts revealed five themes: the work of family carers, the change in relationship from spouse to family carer, family caring as a series of losses, coping mechanisms of family carers and supportive and palliative care experiences of family carers. The six participants who met the criteria for prolonged grief disorder accessed palliative care at a later stage in the disease trajectory.

The delivery of MND diagnosis in an empathetic and supportive manner, the provision of more consistent, tailored, earlier and responsive palliative care services, risk assessment for prolonged grief and a post-bereavement follow-up are all vital for better carer outcomes.