{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,23]],"date-time":"2026-09-23T11:43:03Z","timestamp":1790163783293,"version":"4.1.0"},"reference-count":44,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2014,5,5]],"date-time":"2014-05-05T00:00:00Z","timestamp":1399248000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/501100000406","name":"Motor Neurone Disease Association","doi-asserted-by":"crossref","award":["Young\/Mar07\/6026"],"award-info":[{"award-number":["Young\/Mar07\/6026"]}],"id":[{"id":"10.13039\/501100000406","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["British J Health Psychol"],"published-print":{"date-parts":[[2015,5]]},"abstract":"\n Objectives<\/jats:title>\n \n Although non\u2010invasive ventilation (\n NIV<\/jats:styled-content>\n ) can benefit survival and quality of life, it is rejected by a substantial proportion of people with motor neurone disease (\n MND<\/jats:styled-content>\n ). The aim of this study was to understand why some\n MND<\/jats:styled-content>\n patients decline or withdraw from\n NIV<\/jats:styled-content>\n .\n <\/jats:p>\n <\/jats:sec>\n \n Method<\/jats:title>\n \n Nine patients with\n MND<\/jats:styled-content>\n (male\u00a0=\u00a07, mean age\u00a0=\u00a067\u00a0years) participated in this study. These patients, from a cohort of 35 patients who were offered\n NIV<\/jats:styled-content>\n treatment to support respiratory muscle weakness, did not participate in\n NIV<\/jats:styled-content>\n treatment when it was clinically appropriate. Semi\u2010structured interviews and interpretative phenomenological analysis (\n IPA<\/jats:styled-content>\n ) were employed to explore these patient's experience of\n MND<\/jats:styled-content>\n and their thoughts and understanding of\n NIV<\/jats:styled-content>\n treatment.\n <\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n \n Using\n IPA<\/jats:styled-content>\n , four themes were identified: preservation of the self, negative perceptions of\n NIV<\/jats:styled-content>\n , negative experience with health care services, and not needing\n NIV<\/jats:styled-content>\n . Further analysis identified the fundamental issue to be the maintenance of perceived self, which was interpreted to consist of the sense of autonomy, dignity, and quality of life.\n <\/jats:p>\n <\/jats:sec>\n \n Conclusions<\/jats:title>\n \n The findings indicate psychological reasons for disengagement with\n NIV<\/jats:styled-content>\n . The threat to the self, the sense of loss of control, and negative views of\n NIV<\/jats:styled-content>\n 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\u2010making regarding uptake of\n NIV<\/jats:styled-content>\n and a need for sensitive holistic evaluation if\n NIV<\/jats:styled-content>\n is declined.\n <\/jats:p>\n <\/jats:sec>\n \n \n \n \n \n Statement of contribution<\/jats:title>\n <\/jats:caption>\n \n \n What is already known on this subject?<\/jats:bold>\n <\/jats:italic>\n <\/jats:p>\n \n \n \n \n Non\u2010invasive ventilation is widely used as an effective symptomatic therapy in\n MND<\/jats:styled-content>\n , yet about a third of patients decline the treatment.\n <\/jats:p>\n <\/jats:list-item>\n \n \n Psychological disturbance generated by\n NIV<\/jats:styled-content>\n use leads to negative experiences of the treatment.\n <\/jats:p>\n <\/jats:list-item>\n \n Decision\u2010making about treatment potentials is complex and unique to each individual affected by perceived impact of disease.<\/jats:p>\n <\/jats:list-item>\n <\/jats:list>\n <\/jats:p>\n \n \n What does this study add?<\/jats:bold>\n <\/jats:italic>\n <\/jats:p>\n \n \n \n \n A decision concerning\n NIV<\/jats:styled-content>\n uptake was influenced by perceived impact on individuals' sense of self.\n <\/jats:p>\n <\/jats:list-item>\n \n Sense of self was influenced by the maintenance of autonomy, dignity, and quality of life.<\/jats:p>\n <\/jats:list-item>\n \n \n Individuals' sense of self was identified to have been challenged by the disease,\n NIV<\/jats:styled-content>\n , and their experience of health care service.\n <\/jats:p>\n <\/jats:list-item>\n <\/jats:list>\n <\/jats:p>\n <\/jats:boxed-text>\n <\/jats:p>\n <\/jats:sec>","DOI":"10.1111\/bjhp.12104","type":"journal-article","created":{"date-parts":[[2014,5,5]],"date-time":"2014-05-05T02:06:41Z","timestamp":1399255601000},"page":"341-359","source":"Crossref","is-referenced-by-count":36,"title":["Why don't they accept non\u2010invasive ventilation?: Insight into the interpersonal perspectives of patients with motor neurone disease"],"prefix":"10.1111","volume":"20","author":[{"given":"Hikari","family":"Ando","sequence":"first","affiliation":[{"name":"Department of Psychology Liverpool Hope University UK"},{"name":"Chest Centre Aintree University Hospital Liverpool UK"},{"name":"The Walton Centre NHS Foundation Trust Liverpool UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carl","family":"Williams","sequence":"additional","affiliation":[{"name":"Department of Psychology Liverpool Hope University UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robert M.","family":"Angus","sequence":"additional","affiliation":[{"name":"Chest Centre Aintree University Hospital Liverpool UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Everard W.","family":"Thornton","sequence":"additional","affiliation":[{"name":"School of Psychology University of Liverpool UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Biswajit","family":"Chakrabarti","sequence":"additional","affiliation":[{"name":"Chest Centre Aintree University Hospital Liverpool UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rosanna","family":"Cousins","sequence":"additional","affiliation":[{"name":"Department of Psychology Liverpool Hope University UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lucy H.","family":"Piggin","sequence":"additional","affiliation":[{"name":"School of Psychology University of Liverpool UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carolyn A.","family":"Young","sequence":"additional","affiliation":[{"name":"The Walton Centre NHS Foundation Trust Liverpool 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