{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,14]],"date-time":"2026-09-14T12:33:44Z","timestamp":1789389224926,"version":"build-2803163510"},"reference-count":24,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2017,9,4]],"date-time":"2017-09-04T00:00:00Z","timestamp":1504483200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"name":"Ulla-Carin Lindquist Foundation"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Scandinavian Caring Sciences"],"published-print":{"date-parts":[[2018,6]]},"abstract":"<jats:sec><jats:title>Background<\/jats:title><jats:p>Previous studies have examined manageability and meaningfulness in amyotrophic lateral sclerosis (<jats:styled-content style=\"fixed-case\">ALS<\/jats:styled-content>), but there is a lack of studies examining the comprehensibility of<jats:styled-content style=\"fixed-case\">ALS<\/jats:styled-content>among patients and their spouses.<\/jats:p><\/jats:sec><jats:sec><jats:title>Aim<\/jats:title><jats:p>This qualitative retrospective study aimed to illuminate patients\u2019 and spouses\u2019 experiences of comprehensibility in<jats:styled-content style=\"fixed-case\">ALS<\/jats:styled-content>from a long\u2010term perspective, when symptoms appeared before diagnosis, and when the diagnosis was given and in life after diagnosis.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Individual semi\u2010structured interviews with 14 patients and 13 spouses were performed. The transcribed interviews were subjected to qualitative content analysis.<\/jats:p><\/jats:sec><jats:sec><jats:title>Findings<\/jats:title><jats:p>Through the whole disease process, patients and spouses feared the unknown regardless of whether they comprehended the disease or not. They described that they before diagnosis felt uncertainty. It was problematic to comprehend what was wrong and what the deterioration implied. At the diagnosis, they described feelings of losing their foothold. Long\u2010term after diagnosis, they still lived in fear and looked for reasons why they were afflicted.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Findings of similar experiences in comprehensibility between patients and spouses strengthen the importance of support and information to both parties. Since they hovered between comprehensibility and incomprehensibility during the whole disease process, it is important that their questions, fears and worries are met, from the first visit at hospital and through the whole process. Multiprofessional teams, such as<jats:styled-content style=\"fixed-case\">ALS<\/jats:styled-content>teams and palliative teams can from a holistic perspective increase the possibility of meeting their needs in their unique situation.<\/jats:p><\/jats:sec>","DOI":"10.1111\/scs.12492","type":"journal-article","created":{"date-parts":[[2017,9,4]],"date-time":"2017-09-04T14:52:38Z","timestamp":1504536758000},"page":"663-671","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":26,"title":["Understanding the incomprehensible \u2013 patients\u2019 and spouses\u2019 experiences of comprehensibility before, at and after diagnosis of amyotrophic lateral sclerosis"],"prefix":"10.1111","volume":"32","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-1737-3359","authenticated-orcid":false,"given":"Anneli","family":"Ozanne","sequence":"first","affiliation":[{"name":"Institute of Health and Care Sciences Sahlgrenska Academy University of Gothenburg Gothenburg Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ulla H.","family":"Graneheim","sequence":"additional","affiliation":[{"name":"Department of Nursing Ume\u00e5 University Ume\u00e5 Sweden"},{"name":"Department of Health Sciences University West Trollh\u00e4ttan Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2017,9,4]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1186\/1750-1172-4-3"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.3109\/17482968.2010.546414"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.5153\/sro.2927"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.3109\/21678421.2013.843711"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1080\/14660820310017326"},{"key":"e_1_2_10_7_1","doi-asserted-by":"crossref","first-page":"463","DOI":"10.3233\/NRE-2007-22609","article-title":"Amyotrophic Lateral Sclerosis: ethical issues from diagnosis to end of life","volume":"22","author":"McCluskey L","year":"2007","journal-title":"NeuroRehabilitation"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.2147\/PPA.S37851"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2702.2011.03809.x"},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.1111\/jocn.12071"},{"key":"e_1_2_10_11_1","doi-asserted-by":"publisher","DOI":"10.1017\/S1478951514000625"},{"key":"e_1_2_10_12_1","volume-title":"Unraveling the Mystery of Health: How People Manage Stress and Stay Well","author":"Antonovsky A","year":"1987"},{"key":"e_1_2_10_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.nedt.2003.10.001"},{"key":"e_1_2_10_14_1","first-page":"187","volume-title":"Till\u00e4mpad kvalitativ forskning inom h\u00e4lso\u2010 och sjukv\u00e5rd","author":"Lundman, H\u00e4llgren Graneheim","year":"2012"},{"key":"e_1_2_10_15_1","doi-asserted-by":"publisher","DOI":"10.1111\/jpm.12053"},{"key":"e_1_2_10_16_1","doi-asserted-by":"crossref","DOI":"10.4135\/9781529682571","volume-title":"Qualitative Content Analysis in Practice","author":"Schreier M","year":"2012"},{"key":"e_1_2_10_17_1","first-page":"96","article-title":"El, Escorial World Federation of Neurology criteria for the diagnosis of amyotrophic lateral sclerosis. 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