Related Experiment Video

Updated: Sep 21, 2025

Repeated Measurement of Respiratory Muscle Activity and Ventilation in Mouse Models of Neuromuscular Disease

Repeated Measurement of Respiratory Muscle Activity and Ventilation in Mouse Models of Neuromuscular Disease

Published on: April 17, 2017

"Me and 'that' machine": the lived experiences of people with neuromuscular disorders using non-invasive ventilation

Meredith A Perry¹, Matthew Jenkins¹, Bernadette Jones^2,3

¹Centre for Health, Activity and Rehabilitation Research (CHARR), School of Physiotherapy, University of Otago, Dunedin, New Zealand.

Disability and Rehabilitation

|June 1, 2022

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 REHABILITATIONNeuromuscular 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 identity interpretive phenomenological analysis neuromuscular disorders non-invasive ventilation qualitative

More Related Videos

Author Spotlight: Unraveling the Impact of Mechanical Ventilation on Diaphragm Function and Patient Outcomes

Author Spotlight: Unraveling the Impact of Mechanical Ventilation on Diaphragm Function and Patient Outcomes

Published on: November 3, 2023

Evaluation of Respiratory Muscle Activation Using Respiratory Motor Control Assessment RMCA in Individuals with Chronic Spinal Cord Injury

Evaluation of Respiratory Muscle Activation Using Respiratory Motor Control Assessment RMCA in Individuals with Chronic Spinal Cord Injury

Published on: July 19, 2013

Related Concept Videos

Mechanical Ventilation III: Noninvasive Ventilation

Mechanical Ventilation III: Noninvasive Ventilation

Noninvasive positive-pressure ventilation (NIPPV), continuous positive airway pressure (CPAP), and bilevel positive airway pressure (BiPAP) are essential methods in respiratory care. These ventilation techniques offer unique benefits for patients with various respiratory conditions, providing adequate support without requiring intubation. Let's explore how each method is crucial in improving patient outcomes and enhancing respiratory therapy.
Noninvasive Positive-Pressure Ventilation...

Mechanical Ventilation II: Invasive Ventilation

Mechanical Ventilation II: Invasive Ventilation

Ventilators are essential medical equipment used to aid patients with respiratory difficulties. Their primary function is to assist or replace spontaneous breathing by providing mechanical ventilation. There are two general classes of mechanical ventilators: negative-pressure and positive-pressure ventilators.
Negative-Pressure Ventilators
Negative-pressure ventilators create a vacuum around the chest or body to draw air into the lungs, simulating breathing. This method does not require an...

Mechanical Ventilation I: Indication and Settings

Mechanical Ventilation I: Indication and Settings

Mechanical ventilation is a life-saving technique for managing acute respiratory failure and other respiratory complications. The process involves using a machine known as a ventilator to supply oxygen to the lungs and assist in removing carbon dioxide. It serves as a bridge to long-term mechanical ventilation or a temporary measure until ventilatory support is discontinued. The ventilator can maintain this function for a prolonged period, providing critical support for patients until they can...

Ventilatory Modes

Ventilatory Modes

Mechanical ventilators are life-saving devices that support or replace spontaneous breathing. They deliver breaths to patients through varying methods known as ventilator modes. Understanding these modes is critical for healthcare providers managing patients with respiratory failure.
There are three ventilatory modes: full support, partial support, and spontaneous. These are described below.
Full Support Modes
Full support modes include controlled mechanical ventilation, continuous mandatory...

Hyperpnea and Hyperventilation

Hyperpnea and Hyperventilation

Hyperventilation refers to a higher-than-normal rate and depth of breathing, often associated with anxiety attacks. This excessive breathing surpasses the body's need to expel CO2, leading to a condition known as hypocapnia - an unusually low level of carbon dioxide in the blood. Hypocapnia can constrict cerebral blood vessels, reducing blood flow to the brain, which may result in dizziness or fainting. Early signs include tingling and muscle spasms in the hands and face, caused by falling...

Assessment of Ventilation II: Respiratory Depth and Rhythm

Assessment of Ventilation II: Respiratory Depth and Rhythm

Respiratory Depth
Respiratory depth measures the volume of air inhaled or exhaled during a breath. It can vary from shallow to deep and typically remains consistent when a person is at rest or asleep. Occasionally, individuals will automatically inhale deeply, known as sighing, which inflates the lungs with more air than normal breathing.
To assess respiratory depth, observe the degree of chest excursion or movement:

Articles linked to this work by shared authors, journal, and citation graph.

A systematic review of African-centered school-based interventions.

School psychology (Washington, D.C.)·2026

Cardiac autonomic neuropathy predicts renal decline in type 1 diabetes mellitus: a 15 year follow-up study.

Diabetologia·2026

From topography to connectome: Towards an integrated understanding of the resting brain.

bioRxiv : the preprint server for biology·2026

Sex differences in the enjoyment of enrichment: affective bias testing confirms female rats prefer more playful and less vigorous tickling.

Biology letters·2026

PIK3CA mutant cervical cancer is selectively suppressed by PI3Kα inhibition (Alpelisib/BYL-719 and Inavolisib/GDC-0077) and cooperates with HPV directed T cell therapy.

Neoplasia (New York, N.Y.)·2026

Taunakitanga Takitini, Reframing Self-Management Support for All in Aotearoa New Zealand: Protocol for a Participatory Case Study Program of Research.

JMIR research protocols·2026

See all related articles