Why don't they accept non‐invasive ventilation?: Insight into the interpersonal perspectives of patients with motor neurone disease

Abstract

The findings indicate psychological reasons for disengagement with NIV. The threat to the self, the sense of loss of control, and negative views of NIV resulting from anxiety were more important to these patients than prolonging life in its current form. These findings suggest the importance of understanding the psychological dimension involved in decision-making regarding uptake of NIV and a need for sensitive holistic evaluation if NIV is declined. Statement of contribution What is already known on this subject? Non-invasive ventilation is widely used as an effective symptomatic therapy in MND, yet about a third of patients decline the treatment. Psychological disturbance generated by NIV use leads to negative experiences of the treatment. Decision-making about treatment potentials is complex and unique to each individual affected by perceived impact of disease. What does this study add? A decision concerning NIV uptake was influenced by perceived impact on individuals' sense of self. Sense of self was influenced by the maintenance of autonomy, dignity, and quality of life. Individuals' sense of self was identified to have been challenged by the disease, NIV, and their experience of health care service.

Health care professionals’ views on psychological factors affecting nutritional behaviour in people with motor neuron disease: A thematic analysis

“…Indeed, while avoidance may be seen as a means to retain control during the early phase of psychological adjustment to the disease, most HCPs believed that giving patients the chance to discuss assessments and being directly responsible for nutritional actions early on had the potential to be a more empowering alternative approach to coping and control. At a more general level, this also resonates with a large body of evidence on the influence of perceived control and illness perceptions in people with neurological and neurodegenerative disorders, including Huntington's disease (Arran, Craufurd, & Simpson, 2014;Zarotti, Simpson, & Fletcher, 2017), Parkinson's disease (Hurt et al, 2014;Simpson, Chatzidamianos, Fletcher, Perpetuo, & Eccles, 2018), Alzheimer's disease and mild cognitive impairment (Matchwick, Domone, Leroi, & Simpson, 2014;McIlvane, Popa, Robinson, Houseweart, & Haley, 2008), and MND (Ando et al, 2015;Eccles & Simpson, 2011;. This observation is in line with current theorizations around the psychological adaptation to chronic illness.…”

Effects of non-invasive ventilation on objective sleep and nocturnal respiration in patients with amyotrophic lateral sclerosis

“…We consider this meaningful in both clinical and ethical terms. Since patients and caregivers in particular may be reluctant to start NIV at all or as early as subtle SDB has been detected [3,10], the data we present here may be helpful in patient counseling and informed decision making, respectively. …”

A qualitative study of experiences of health and social care in home mechanical ventilation

“…During the past 20 years, HMV has been implemented in an increasing number of countries, but the care arrangements which support HMV, vary greatly between and within countries (Ando et al, ; Hannan et al, ; Lloyd‐Owen et al, ; Nasiłowski et al, ; Stuart & Weinrich, ). Individuals using HMV require an organized care structure to facilitate a good quality of life (Stuart & Weinrich, ).…”