{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,22]],"date-time":"2026-06-22T06:23:54Z","timestamp":1782109434688,"version":"3.54.5"},"reference-count":71,"publisher":"Public Library of Science (PLoS)","issue":"12","license":[{"start":{"date-parts":[[2024,12,2]],"date-time":"2024-12-02T00:00:00Z","timestamp":1733097600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS ONE"],"abstract":"<jats:sec id=\"sec001\">\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Amyotrophic Lateral Sclerosis (ALS), an incurable motor neuron disease, primarily affects those between the ages of 60\u201379, and has an approximate post-diagnosis life-expectancy of only two to five years. The condition has an unpredictable but ultimately terminal trajectory that poses challenges for patients, caregivers and healthcare providers. While the diagnosis and disclosure are critical periods for intervention and support, knowledge regarding the relational, communicational and psychodynamic forces that occur within the process of diagnostic disclosure is relatively limited.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec002\">\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>The purpose of this study was to explore the experiences of persons living with ALS in the diagnosis and disclosure of the condition, with the support of their caregivers.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec003\">\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We conducted a focus group and in-depth individual interviews with people living with ALS (n = 9), and caregivers (n = 9). The interviews were transcribed, cleaned, and anonymized, and then entered into NVivo 11 for thematic analysis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec004\">\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Participants discussed the diagnostic process, including inklings and subtle changes prior to diagnosis, attempts at self-diagnosis, and the lengthy assessment process. Time was also a consideration in the diagnostic disclosure process, in which participants shared how the disclosure was the product of longstanding conversations with their care providers. It was described as rarely a shock to finally have confirmation. Participants shared their information seeking strategies and needs for a diagnosis that, for them, typically came with insufficient information on the disease, prognosis, and next steps.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec005\">\n                    <jats:title>Significance<\/jats:title>\n                    <jats:p>This project serves as a step in bridging the relevant gaps in our knowledge and understanding towards improved person-centered care practices in the diagnosis and disclosure of ALS.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1371\/journal.pone.0301249","type":"journal-article","created":{"date-parts":[[2024,12,2]],"date-time":"2024-12-02T13:43:31Z","timestamp":1733147011000},"page":"e0301249","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":3,"title":["\u201c\u2026but I know something\u2019s not right here\u201d: Exploring the diagnosis and disclosure experiences of persons living with ALS"],"prefix":"10.1371","volume":"19","author":[{"given":"Kathleen M.","family":"Foldvari","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5685-0843","authenticated-orcid":true,"given":"Paul","family":"Stolee","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elena","family":"Neiterman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Veronique","family":"Boscart","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Catherine","family":"Tong","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"340","published-online":{"date-parts":[[2024,12,2]]},"reference":[{"key":"pone.0301249.ref001","volume-title":"A guide to ALS patient care for primary care physicians","author":"ALS Society of Canada","year":"2024"},{"issue":"4","key":"pone.0301249.ref002","doi-asserted-by":"crossref","first-page":"411","DOI":"10.1017\/S1478951515001066","article-title":"Advance care planning in motor neuron disease: a systematic review","volume":"14","author":"L Murray","year":"2016","journal-title":"Palliat Support Care"},{"key":"pone.0301249.ref003","doi-asserted-by":"crossref","DOI":"10.1093\/acprof:oso\/9780199686025.001.0001","volume-title":"Palliative care in amyotrophic lateral sclerosis: from diagnosis to bereavement","author":"D Oliver","year":"2014","edition":"3"},{"issue":"1","key":"pone.0301249.ref004","doi-asserted-by":"crossref","first-page":"231","DOI":"10.1177\/0269216317709965","article-title":"Caregiver burden in amyotrophic lateral sclerosis: a systematic review","volume":"32","author":"J de Wit","year":"2017","journal-title":"Palliat Med"},{"issue":"4","key":"pone.0301249.ref005","doi-asserted-by":"crossref","first-page":"327","DOI":"10.1191\/0269216303pm754oa","article-title":"Burden of care in amyotrophic lateral sclerosis","volume":"17","author":"MJLGE Hecht","year":"2003","journal-title":"Palliat Med"},{"issue":"6","key":"pone.0301249.ref006","doi-asserted-by":"crossref","first-page":"685","DOI":"10.1080\/13548506.2010.507773","article-title":"Burden, depression, and anxiety in caregivers of people with amyotrophic lateral sclerosis","volume":"15","author":"F Pagnini","year":"2010","journal-title":"Psychol Health Med"},{"key":"pone.0301249.ref007","unstructured":"ALS Canada. About ALS. [Internet]. Toronto: ALS Society of Canada; c2024 [cited 2024 Nov 15] Available from: https:\/\/als.ca\/what-is-als\/about-als\/."},{"key":"pone.0301249.ref008","doi-asserted-by":"crossref","first-page":"12408","DOI":"10.1038\/ncomms12408","article-title":"Projected increased in amyotrophic lateral sclerosis from 2015\u20132040","volume":"7","author":"KC Arthur","year":"2016","journal-title":"Nat Commun"},{"key":"pone.0301249.ref009","volume-title":"Ageing and health","author":"World Health Organization","year":"2024"},{"issue":"2","key":"pone.0301249.ref010","doi-asserted-by":"crossref","first-page":"142","DOI":"10.1007\/s13670-015-0127-8","article-title":"Amyotrophic lateral sclerosis: an aging related disease","volume":"4","author":"G Logroscino","year":"2015","journal-title":"Curr Geriatr Rep"},{"key":"pone.0301249.ref011","doi-asserted-by":"crossref","first-page":"15","DOI":"10.36255\/exonpublications.amyotrophiclateralsclerosis.diagnosticdelay.2021","volume-title":"Amyotrophic Lateral Sclerosis","author":"D Richards","year":"2021"},{"key":"pone.0301249.ref012","doi-asserted-by":"crossref","first-page":"691","DOI":"10.2147\/PPA.S36759","article-title":"Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis: the views of health professionals","volume":"6","author":"A Hogden","year":"2012","journal-title":"Patient Prefer Adherence"},{"key":"pone.0301249.ref013","doi-asserted-by":"crossref","first-page":"745","DOI":"10.3389\/fpsyg.2015.00745","article-title":"Communication of diagnosis in amyotrophic lateral sclerosis: stratification of patients for estimation of individual needs","volume":"6","author":"A Pizzimenti","year":"2015","journal-title":"Front Psychol"},{"issue":"3","key":"pone.0301249.ref014","doi-asserted-by":"crossref","first-page":"161","DOI":"10.1080\/14660820600601051","article-title":"How does current care practice influence the experience of a new diagnosis of motor neuron disease? 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