Experiences of living with motor neurone disease: a review of qualitative research

Abstract

Purpose: This review sought to answer the question “what is known about people’s experiences of living with MND?”. Methods: The review followed the guidelines of the Centre of Reviews and Dissemination. Twenty articles met the inclusion criteria and their results were analysed thematically. Data were managed and coded using the software package NVIVO and the analysis was performed in two stages, with the first stage aiming to develop descriptive themes offering an overview of the included data. During the second stage, analytical themes were developed with the explicit aim to answer the review question. Results: The themes that emerged point to the following: (a) people with motor neurone disease (MND) develop experiential knowledge that helps them to live with the disease and (b) while people with MND believe they do not have any control over the disease, they try to have control over their lives through active choices, e.g. how and when to use adaptive equipment. Conclusions: This review highlights the decision-making and knowledge generating processes used by people with MND. Further research is required to explore these processes and their implications for the care of people with MND.

Implications for Rehabilitation

• Decision-making process by MND patients regarding their care is complex and takes into account the social elements of the disease as well as the medical.

• Exploring the practical knowledge that patients develop can offer insights on appropriate care for MND patients.

• Care preferences
• illness experience
• motor neurone disease
• patient involvement

Acknowledgements

The authors are grateful to the two anonymous reviewers for their helpful comments and to Sarah Kantartzis and Margaret McGrath for offering feedback on earlier drafts of this article.