Motor neurone disease: insight into experience of family carers

Abstract

Background Palliative care at home relies on family carers. Motor neurone disease (MND) is a progressive, degenerative disease that affects both the person with the condition and the family which provides care and support. Aim This study aimed to provide a qualitative insight into carers’ experience of living with and caring for a family member with MND. Methods Following ethical approval, nine current carers were purposively sampled from a regional MND clinic. Qualitative, semistructured interviews were audiotaped, transcribed verbatim and analysed thematically using Colaizzi’s framework. Findings Five themes were identified: (1) ‘MND: the specifics and differences’ (reflecting the specific nature and progression of the disease); (2) ‘normality vs reality’ (providing an insight into daily living); (3) ‘defining the total loss but holding onto hope’ (encompassing past, present and future losses, whilst maintaining a positive attitude); (4) ‘information needs and support — at whose pace?’ (recognising the differences in need between the carer and the person with MND); (5) ‘living with a tension of contradiction’ (this is an underpinning theme which runs throughout all the themes). Conclusion Understanding carers’ experience and its individual nature can act as a foundation upon which individual palliative assessment of need and support can begin. Conflicts of interest None