“Me and ‘that’ machine”: the lived experiences of people with neuromuscular disorders using non-invasive ventilation

Abstract

Purpose

Neuromuscular disorders (NMD) encompasses a wide range of conditions, with respiratory weakness a common feature. Respiratory care can involve non-invasive ventilation (NIV) resulting in fewer hospital admissions, a lower mortality rate and improved quality of life. The aim of this study was to explore the ‘lived experience’ of NIV by people with NMD.

Methods

Interpretive Phenomenological Analysis (IPA) with semi-structured, face to face interviews with 11 people with NMD, using bi-level positive airway pressure for NIV for more than 12 months.

Results

Three themes were interpreted: (i) Alive, with a life; (ii) Me and ‘that’ machine; and (iii) Precariousness of this life. NIV enabled hope, independence and the opportunity to explore previously perceived unattainable life experiences. Yet, participants felt dependent on the machine. Furthermore, practical considerations and fear of NIV failure created a sense of precariousness to life and a reframing of personal identity.

Conclusion

The findings highlight the broad ranging positive and negative effects that may occur for people with NMD when using this important therapy. Ongoing non-judgemental support and empathy are required from health professionals as the use of NIV challenged concepts such as ‘living life well’ for people with NMD.

IMPLICATIONS FOR REHABILITATION

• Neuromuscular disorders may result in respiratory weakness requiring non-invasive ventilation (NIV).

• When prescribed early, NIV can results in fewer hospital admissions, a lower mortality rate and improved quality of life.

• The relationship of people with NMD with their NIV machine is complex and impacts on and requires adjustment to their identity.

• NIV users acknowledged that NIV provided hope but simultaneously recognised the precariousness of NIV on their life.

• In order to better support people with NMD healthcare professionals need to better understand how the physical, psychological and social implications of NIV affect an individual’s life.

Keywords:

• Lived experience
• neuromuscular disorders
• non-invasive ventilation
• qualitative
• interpretive phenomenological analysis
• identity

Acknowledgements

The authors would like to thank the participants, their caregivers and families for giving their time generously to speak with us. Thank you to the University of Otago library staff for their time and efforts in assisting with the retrieval of material relating to this research. Finally, thank you to Mandy Wilkinson for assisting with final preparation of the manuscript for publication.

Disclosure statement

The authors have no conflicts of interest to declare. The principal investigator, co-investigators and direct members of their families have no commercial interest in the interventions being studied, nor did they have any financial relationship to the funder that may inappropriately influence his or her conduct in the study. Principal investigator and co-investigators will, in no way, be remunerated for their involvement in a way that may inappropriately influence his or her conduct in the study. No other researchers involved face other conflicts of interest.

Additional information

Funding

The research was funded by a University of Otago Research Grant (UORG).