Experience of long-term use of non-invasive ventilation in motor neuron disease: an interpretative phenomenological analysis

Ando, Hikari; Chakrabarti, Biswajit; Angus, Robert; Thornton, Everard W.; Young, Carolyn A

doi:10.1136/bmjspcare-2013-000494

Cited by 21 publications

(22 citation statements)

References 28 publications

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“…This investigation is a part of a larger prospective study (Ando et al, 2014;Cousins et al, 2013). The aim of the larger study was to explore the experience of NIV treatment over time in patients with MND and their caregivers, which is being undertaken at two National Health Service foundation trusts in North West England, United Kingdom.…”

Section: Methodsmentioning

confidence: 99%

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

Ando

Williams

Angus

et al. 2014

British J Health Psychol

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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.

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Section: Methodsmentioning

confidence: 99%

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

Ando

Williams

Angus

et al. 2014

British J Health Psychol

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“…Despite these benefits, it is clear that most of the studies' findings identified and focused on problematic experiences of adult people undergoing NIV treatment [22,24,27,30,33,34,50,51]. These problematic experiences were common themes across the studies and they are explored in the next sections.…”

Section: Benefits Of Nivmentioning

confidence: 98%

“…This may suggest that the majority of NIV treatment studies are performed with most of the participants recruited from community centres across the world. There was also variance in the representation of men and women: four studies included men only [28][29][30][31] and one study included females only [32]. The age ranges varied from 27-85 years.…”

Section: Studies Includedmentioning

confidence: 99%

“…A number of studies highlighted that most of patients with acute respiratory failure usually have a fear of technology, how it works and possible adverse effects [22,23,29,39,40,43,47]. Fear of technology was highlighted in the study by INGADÓTTIR and JONSDOTTIR [43], in which most of the participants experienced fear of the ventilation machine.…”

Section: Fear Of Technologymentioning

confidence: 99%

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Experiences of noninvasive ventilation in adults with hypercapnic respiratory failure: a review of evidence

2016

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Noninvasive ventilation (NIV) has been shown to be beneficial for patients with respiratory failure; however, many patients fail to tolerate it and require other interventions. The objective of this thematic synthesis was to describe the nature of NIV experiences in adults with hypercapnic respiratory failure. A systematic, computerised literature search of English-language databases was undertaken with no restriction on date of publication. A total of 99 papers was identified and screened for eligibility from databases including CINAHL, Medline and PsycINFO, and some were hand searched. 45 papers were critically appraised and 32 met our inclusion criteria. Thematic analysis identified six key themes: benefits of NIV; fear (of various categories, namely, fear of technology/mask, fear of death and dying, and fear of pain and suffering); adaptation to NIV machine; decision making; need for information; and relationship with healthcare professionals. For people using NIV treatment, the experience of being on the NIV machine is unexpected and can be stressful. Findings from this review offer healthcare professionals insights and understanding into the patient experience of NIV. Healthcare professionals may use these findings to implement new strategies in NIV provision and the exploration of the applicability of age-specific supportive care NIV guidelines.

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“…In most cases, children on LTV, both via tracheostomy and mask interfaces, report the burden of care as mild or moderate 19. While adult qualitative studies suggest acceptance among patients in whom LTV offers symptomatic relief or is essential for survival,20 some patients with neuromuscular disease have expressed hopelessness, related to their diagnosis rather than to the burden of LTV 21…”

Section: Patient and Family Considerationsmentioning

confidence: 99%

Towards developing an ethical framework for decision making in long-term ventilation in children

et al. 2018

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The use of long-term ventilation (LTV) in children is growing in the UK and worldwide. This reflects the improvement in technology to provide LTV, the growing number of indications in which it can be successfully delivered and the acceptability of LTV to families and children. In this article, we discuss the various considerations to be made when deciding to initiate or continue LTV, describe the process that be followed, as decided by a consensus of experienced physicians, and outline the options available for resolution of conflict around LTV decision making. We recognise the uncertainty and hope provided by novel and evolving therapies for potential disease modification. This raises the question of whether LTV should be offered to allow time for a therapy to be trialled, or whether the therapy is unlikely to be effective, LTV would simply prolong suffering. We put this consensus view forward as an ethical framework for decision making in children requiring LTV.

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Experience of long-term use of non-invasive ventilation in motor neuron disease: an interpretative phenomenological analysis

Abstract: This exploratory study suggests that a positive coping style, adaptation and hope are key factors for psychological well-being and better adherence to NIV. More studies are needed to determine these relationships.

Cited by 21 publications

References 28 publications

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

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

Experiences of noninvasive ventilation in adults with hypercapnic respiratory failure: a review of evidence

Towards developing an ethical framework for decision making in long-term ventilation in children

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