The personal experience of partners of individuals with motor neuron disease

Abstract

Most research on partners’ experiences of living with a person with MND is questionnaire-based with no qualitative study focusing on the period between diagnosis and end-of-life care. This study aimed to provide an in-depth qualitative exploration of the experience of living with, and caring for, a partner with MND.

Semi-structured interviews were conducted with eight individuals, and transcripts analysed from an interpretative phenomenological perspective. Two main themes were derived. ‘Impact on life’ included having concern for partner's safety, having social restrictions, being continually tired, struggling with anger and frustration, loss of intimacy and uncertainty around the future; while ‘Adjusting to the situation’ included trying to be strong, retaining a sense of normality, appreciation of specialist services, adopting a problem-solving approach, living day to day and ability to remain positive. In conclusion, experiences of stress and loss are illustrated in this sample of partners of those with MND, and it is suggested both these aspects should be integrated into understanding of carers’ experiences. Carers appear to inhibit their grief in order to appear strong. Greater understanding of the consequences of this would help in providing appropriate emotional support.

Key words::

• Motor neuron disease
• chronic illness
• caregiving
• spouse
• interpretive phenomenology
• qualitative
• grief
• stress

Acknowledgements

We thank the staff at the MND Clinic, Queen Elizabeth Hospital, Birmingham, for their support and contribution. We are also extremely grateful to the research participants for volunteering their time and telling their stories.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.