A qualitative investigation of the factors influencing the uptake of noninvasive ventilation among Australians with motor neurone disease.

Abstract summary

Non-invasive ventilation (NIV) improves quality of life and extends survival for people with motor neurone disease (pwMND); however, uptake in Australia remains modest. This study explored the factors that influence the uptake of NIV from the perspectives of pwMND, caregivers, and healthcare professionals. Thirty-nine semi-structured interviews were conducted with pwMND (n = 8), family caregivers of pwMND (n = 4), and healthcare professionals (n = 27). A two-stage deductive-inductive analysis was performed to identify common themes that influence the uptake of NIV in MND. Twenty-six key influencing factors were identified, relating to three major themes: influences on the pwMND's decision to trial NIV; healthcare professional knowledge, beliefs and behaviors; and inequity and lack of responsiveness in the healthcare system. Inductive analysis also identified a fourth theme, disparities in NIV uptake. Within this theme, women, older people, and First Nations Australians were acknowledged as demographic groups experiencing challenges to NIV uptake that warrant further investigation. This research identified multiple modifiable factors influencing the uptake of NIV that can inform the design of targeted interventions to reduce inequitable access to NIV, increase uptake, and optimize quality of life for pwMND. For people living with motor neurone disease (MND), non-invasive ventilation (NIV) effectively improves quality of life and increases survival.Despite the well-established benefits, the uptake of NIV by people with MND is highly variable.This study found that the barriers to accessing NIV outweighed the barriers to accepting NIV when it is offered.Strategies that empower people with MND with knowledge about NIV, skills to proactively manage their health, and connections with the MND community are crucial to improving NIV uptakeInterventions targeting healthcare professionals’ knowledge, skills, and attitudes regarding NIV are also needed, particularly for healthcare professionals who do not specialize in MND.

Evidence labels

Therapeutic relevance

Pending review