What is the current state of the research literature examining the impact of the motor neurone disease journey on the couple's relationship? A scoping review.

Abstract

Background: Motor neurone disease (MND) results in complex and disabling symptoms that give rise to significant and challenging care needs. While much of the care required is typically provided by the partner of the individual who has been diagnosed with MND, there are few studies that have investigated the impact of MND on the couple's relationship.

Objectives: To establish the current state of the research literature examining the impact of MND on the couple's relationship.

Methods: A scoping review was undertaken with thematic analysis used to synthesize the data.

Results: The scoping review identified 15 studies that were thematically analyzed to identify prominent themes. The following 5 themes were identified: adjusting to new roles; changes in communication and values; spouse well-being and health; and changes to social relationships and intimacy changes.

Significance of results: This scoping review highlighted the impact of the MND trajectory on the couple's relationship overall and on key areas of couple communication and functioning. These areas can be used to guide the development of interventions and services that are tailored to the needs of couple relationships. Further understanding of the factors impacting the couple's relationship on the MND journey and how to navigate these factors is critically warranted.