{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,2]],"date-time":"2026-07-02T08:28:49Z","timestamp":1782980929716,"version":"3.54.5"},"reference-count":46,"publisher":"Wiley","issue":"9-10","license":[{"start":{"date-parts":[[2018,4,19]],"date-time":"2018-04-19T00:00:00Z","timestamp":1524096000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100010014","name":"Manchester Metropolitan University","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100010014","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Journal of Clinical Nursing"],"published-print":{"date-parts":[[2018,5]]},"abstract":"<jats:sec><jats:title>Aims and objectives<\/jats:title><jats:p>To explore the meaning of living with uncertainty for people diagnosed with motor neurone disease (MND).<\/jats:p><\/jats:sec><jats:sec><jats:title>Background<\/jats:title><jats:p>Motor neurone disease is a progressive neurodegenerative condition resulting in multiple needs, arising from the complex nature of the disease trajectory. People with MND are often required to make decisions for symptom management and end\u2010of\u2010life care. Research into the lived experience of MND has previously highlighted the following: the shock of receiving such a diagnosis and prognosis; subsequent concerns relating to the future and loss; and the existential suffering for a person with MND. The lived experiences of MND accentuate the devastating nature of the disease, and this can impact upon how people respond to care.<\/jats:p><\/jats:sec><jats:sec><jats:title>Design<\/jats:title><jats:p>Hermeneutic (interpretive) phenomenology: suitable for studying lifeworld experiences.<\/jats:p><\/jats:sec><jats:sec><jats:title>Method<\/jats:title><jats:p>Life story interviews were conducted with four participants and subjected to interpretive analysis.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Three phases of the MND illness trajectory emerged: \u201cbody failing prematurely and searching for answers,\u201d \u201cbody deterioration and responses to care\u201d and \u201cbody nearing its end and needing to talk.\u201d These phases highlight the phenomenon under study, all relating to uncertainty for people living with MND.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>This study showed that people with MND are living with uncertainty and other concerns throughout their illness trajectory. People are having to turn to palliative care professionals who are more able to meet their concerns than those caring for other aspects of their disease.<\/jats:p><\/jats:sec><jats:sec><jats:title>Relevance to clinical practice<\/jats:title><jats:p>Motor neurone disease is a complex disease, and it is important that professionals continue to provide holistic care throughout the illness trajectory. The identification of three distinct phases of the MND illness trajectory will help nurses and other professionals to better understand the meaning of uncertainty and other concerns for people with MND.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jocn.14350","type":"journal-article","created":{"date-parts":[[2018,3,8]],"date-time":"2018-03-08T17:32:37Z","timestamp":1520530357000},"page":"2062-2071","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":20,"title":["The meaning of living with uncertainty for people with motor neurone disease"],"prefix":"10.1111","volume":"27","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-3827-3368","authenticated-orcid":false,"given":"Denise Andrea","family":"Harris","sequence":"first","affiliation":[{"name":"Faculty of Health, Psychology and Social Care Manchester Metropolitan University Manchester UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8560-9418","authenticated-orcid":false,"given":"Kirsten","family":"Jack","sequence":"additional","affiliation":[{"name":"Faculty of Health, Psychology and Social Care Manchester Metropolitan University Manchester UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christopher","family":"Wibberley","sequence":"additional","affiliation":[{"name":"Faculty of Health, Psychology and Social Care Manchester Metropolitan University Manchester UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2018,4,19]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1111\/1467-9566.12104"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jns.2016.06.033"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jns.2016.11.043"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1177\/0141076813511451"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1177\/082585970001600204"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1089\/109662101753381647"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1177\/030802260707000107"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1191\/1463423603pc151oa"},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2648.2007.04588.x"},{"key":"e_1_2_10_11_1","doi-asserted-by":"publisher","DOI":"10.12968\/bjnn.2005.1.5.20273"},{"key":"e_1_2_10_12_1","doi-asserted-by":"publisher","DOI":"10.1111\/jocn.14003"},{"key":"e_1_2_10_13_1","doi-asserted-by":"publisher","DOI":"10.4135\/9781446279878"},{"key":"e_1_2_10_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(14)70221-2"},{"key":"e_1_2_10_15_1","doi-asserted-by":"publisher","DOI":"10.1177\/082585970301900107"},{"issue":"1","key":"e_1_2_10_16_1","first-page":"18","article-title":"Timeliness of diagnosis in Motor Neurone Disease: A population\u2010based study","volume":"77","author":"Donaghy C.","year":"2008","journal-title":"Ulster Medical Journal"},{"key":"e_1_2_10_17_1","doi-asserted-by":"publisher","DOI":"10.1002\/9781119975144"},{"key":"e_1_2_10_18_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1440-1800.2003.00163.x"},{"key":"e_1_2_10_19_1","doi-asserted-by":"publisher","DOI":"10.3109\/17482968.2011.607500"},{"key":"e_1_2_10_20_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2013.11.003"},{"key":"e_1_2_10_21_1","volume-title":"Truth and method","author":"Gadamer H. G.","year":"1975"},{"key":"e_1_2_10_22_1","doi-asserted-by":"publisher","DOI":"10.12968\/ijpn.2015.21.5.251"},{"key":"e_1_2_10_23_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(13)70026-7"},{"key":"e_1_2_10_24_1","unstructured":"Harris D. A.(2014).\u2018Existential Loss\u2019 in the context of motor neurone disease: A hermeneutic phenomenological study. Unpublished Thesis Salford UK:University of Salford."},{"key":"e_1_2_10_25_1","doi-asserted-by":"publisher","DOI":"10.1017\/S1478951515000620"},{"key":"e_1_2_10_26_1","volume-title":"Being and time","author":"Heidegger M.","year":"1927"},{"key":"e_1_2_10_27_1","doi-asserted-by":"publisher","DOI":"10.1002\/pon.1424"},{"key":"e_1_2_10_28_1","doi-asserted-by":"publisher","DOI":"10.2147\/JMDH.S134992"},{"key":"e_1_2_10_29_1","doi-asserted-by":"publisher","DOI":"10.4135\/9781849209007"},{"key":"e_1_2_10_30_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2524.2005.00530.x"},{"key":"e_1_2_10_31_1","doi-asserted-by":"publisher","DOI":"10.1111\/1467-9566.12182"},{"key":"e_1_2_10_32_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1467-9566.2009.01176.x"},{"key":"e_1_2_10_33_1","doi-asserted-by":"publisher","DOI":"10.5750\/ejpch.v1i2.827"},{"key":"e_1_2_10_34_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(07)60944-1"},{"key":"e_1_2_10_35_1","unstructured":"Motor Neurone Disease Association (MNDA)(2013).Living with MND guide. Retrieved fromwww.mndassociation.org. December 16 2013."},{"key":"e_1_2_10_36_1","unstructured":"Motor Neurone Disease Association (MNDA)(2015).Motor neurone disease: a guide for GPs and primary care teams. Retrieved fromhttp:\/\/www.mndassociation.org. June 24th 2015."},{"key":"e_1_2_10_37_1","unstructured":"Motor Neurone Disease Association (MNDA)(2016).A professional's guide to end of life care in motor neurone disease (MND). Retrieved fromhttps:\/\/www.mndassociation.org. July 19th 2017."},{"key":"e_1_2_10_38_1","volume-title":"Commissioning end of life care","author":"National Council for Palliative Care (NCPC)","year":"2011"},{"key":"e_1_2_10_39_1","doi-asserted-by":"publisher","DOI":"10.3109\/17482968.2010.546414"},{"key":"e_1_2_10_40_1","unstructured":"O'Toole S.(2011).A narrative analysis of accounts of dying with motor neurone disease: Stories of suffering. Unpublished Thesis.Dublin Ireland:University College Dublin."},{"key":"e_1_2_10_41_1","doi-asserted-by":"publisher","DOI":"10.1111\/scs.12492"},{"key":"e_1_2_10_42_1","doi-asserted-by":"publisher","DOI":"10.1111\/jocn.12071"},{"key":"e_1_2_10_43_1","unstructured":"Sigrist D.(2009).Compassion and support at the end of life. Retrieved fromhttp:\/\/www.compassionandsupport.org\/index.php\/for_patients_families\/death_dying\/dying_process. October 11 2017."},{"key":"e_1_2_10_44_1","doi-asserted-by":"crossref","DOI":"10.1093\/oso\/9780199206919.001.0001","volume-title":"Motor neuron disease: The facts","author":"Talbot K.","year":"2008"},{"key":"e_1_2_10_45_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2524.2001.00320.x"},{"key":"e_1_2_10_46_1","doi-asserted-by":"publisher","DOI":"10.1177\/0269216311410900"},{"key":"e_1_2_10_47_1","unstructured":"WHO(2002).Definition of palliative care. World Health Organization. Retrieved fromhttp:\/\/www.who.int\/cancer\/palliative\/definition\/en\/. September 30th 2017."}],"container-title":["Journal of Clinical Nursing"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fjocn.14350","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jocn.14350","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,7,1]],"date-time":"2024-07-01T21:54:41Z","timestamp":1719870881000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/jocn.14350"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2018,4,19]]},"references-count":46,"journal-issue":{"issue":"9-10","published-print":{"date-parts":[[2018,5]]}},"alternative-id":["10.1111\/jocn.14350"],"URL":"https:\/\/doi.org\/10.1111\/jocn.14350","archive":["Portico"],"relation":{},"ISSN":["0962-1067","1365-2702"],"issn-type":[{"value":"0962-1067","type":"print"},{"value":"1365-2702","type":"electronic"}],"subject":[],"published":{"date-parts":[[2018,4,19]]},"assertion":[{"value":"2018-02-25","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2018-04-19","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}