{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,5]],"date-time":"2026-03-05T15:42:21Z","timestamp":1772725341979,"version":"3.50.1"},"reference-count":86,"publisher":"Cambridge University Press (CUP)","license":[{"start":{"date-parts":[[2026,3,5]],"date-time":"2026-03-05T00:00:00Z","timestamp":1772668800000},"content-version":"unspecified","delay-in-days":63,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["cambridge.org"],"crossmark-restriction":true},"short-container-title":["Pall Supp Care"],"published-print":{"date-parts":[[2026]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec id=\"S1478951526101965_sec1a\">\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>Narrative-based approaches have been utilized in medicine to better understand the illness experiences of individuals living with chronic conditions. In particular, people with amyotrophic lateral sclerosis (pALS) may benefit from use of narrative-based approaches, given the potential impact of progressive decline on identity of self. This review explores the use of narrative-based approaches in studies involving pALS to provide further insight to the experiences and psychosocial needs of this population.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"S1478951526101965_sec2b\">\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>A search was conducted utilizing EMBASE, CINAHL, PsycInfo, and Google Scholar with several terms related to amyotrophic lateral sclerosis (ALS) and narrative-based approaches. Studies were included if they were written in English, incorporated methods that promoted the production of narratives, and reported data that could be clearly isolated to pALS.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"S1478951526101965_sec3c\">\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>The search revealed a total of 154 articles for title and abstract screening. Fifty-two articles were selected for full-text review. Thirty-two articles met the criteria for data extraction. Four descriptive categories emerged upon examination of the narrative-based approaches implemented across the studies: psychosocial intervention, illness experience, intervention targeting specific needs, and secondary analysis of data. Some of the common themes identified across studies included: loss of physical and communicative function, adaptation to life changes, shifts in identity, and tension with the healthcare system.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"S1478951526101965_sec4d\">\n                    <jats:title>Significance of results<\/jats:title>\n                    <jats:p>Despite the communication challenges that often coincide with disease progression, narrative-based approaches can be utilized in pALS. These approaches should be implemented to gain insight on the disease experiences of pALS, providing opportunity for patient-centered interventions to address the psychosocial needs of this population.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1017\/s1478951526101965","type":"journal-article","created":{"date-parts":[[2026,3,5]],"date-time":"2026-03-05T14:44:16Z","timestamp":1772721856000},"update-policy":"https:\/\/doi.org\/10.1017\/policypage","source":"Crossref","is-referenced-by-count":0,"title":["Exploring the use of narrative-based approaches in individuals with amyotrophic lateral sclerosis: A narrative review"],"prefix":"10.1017","volume":"24","author":[{"ORCID":"https:\/\/orcid.org\/0009-0007-7449-3361","authenticated-orcid":false,"given":"Kristie","family":"Calix, Kannaley","sequence":"first","affiliation":[{"name":"University of Maryland Baltimore Graduate Studies in Palliative Care"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"56","published-online":{"date-parts":[[2026,3,5]]},"reference":[{"key":"S1478951526101965_ref50","doi-asserted-by":"publisher","DOI":"10.1177\/0269216316665562"},{"key":"S1478951526101965_ref33","doi-asserted-by":"publisher","DOI":"10.7812\/TPP\/09.996"},{"key":"S1478951526101965_ref55","doi-asserted-by":"publisher","DOI":"10.5116\/ijme.4f7e.e332"},{"key":"S1478951526101965_ref61","doi-asserted-by":"publisher","DOI":"10.3109\/17482968.2010.546414"},{"key":"S1478951526101965_ref22","first-page":"42","volume-title":"New Meanings of Death","author":"Feifel","year":"1977"},{"key":"S1478951526101965_ref65","doi-asserted-by":"publisher","DOI":"10.1111\/1467-9566.t01-1-00337"},{"key":"S1478951526101965_ref12","first-page":"23","volume-title":"Psychoanalysis and Narrative Medicine","author":"Charon","year":"2008"},{"key":"S1478951526101965_ref86","doi-asserted-by":"publisher","DOI":"10.1111\/jocn.15697"},{"key":"S1478951526101965_ref54","doi-asserted-by":"publisher","DOI":"10.1017\/S1478951523001888"},{"key":"S1478951526101965_ref6","first-page":"424","article-title":"Photovoice: A review of the literature in health and public health","volume":"37","author":"Catalani","year":"2010","journal-title":"Health Educ Behav Off Publ Soc Public Health Educ"},{"key":"S1478951526101965_ref8","first-page":"283","article-title":"Struggling for a self: Identity levels of the chronically ill","volume":"6","author":"Charmaz","year":"1987","journal-title":"Research in the Sociology of Health Care"},{"key":"S1478951526101965_ref41","doi-asserted-by":"publisher","DOI":"10.1097\/00129191-200310000-00014"},{"key":"S1478951526101965_ref19","first-page":"1277","article-title":"From suffering to transcendence. Narratives in palliative care","volume":"53","author":"De Benedetto","year":"2007","journal-title":"Can Fam Physician"},{"key":"S1478951526101965_ref35","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2019-1030"},{"key":"S1478951526101965_ref60","doi-asserted-by":"publisher","DOI":"10.12968\/bjnn.2006.2.8.22040"},{"key":"S1478951526101965_ref67","doi-asserted-by":"publisher","DOI":"10.1016\/j.iccn.2011.11.005"},{"key":"S1478951526101965_ref17","doi-asserted-by":"publisher","DOI":"10.2147\/AMEP.S13241"},{"key":"S1478951526101965_ref85","doi-asserted-by":"publisher","DOI":"10.1055\/s-2001-19074"},{"key":"S1478951526101965_ref46","doi-asserted-by":"publisher","DOI":"10.1353\/book.1841"},{"key":"S1478951526101965_ref13","doi-asserted-by":"publisher","DOI":"10.1080\/00909880902792248"},{"key":"S1478951526101965_ref9","doi-asserted-by":"publisher","DOI":"10.1001\/jama.286.15.1897"},{"key":"S1478951526101965_ref29","doi-asserted-by":"publisher","DOI":"10.1037\/neu0000291"},{"key":"S1478951526101965_ref59","doi-asserted-by":"publisher","DOI":"10.1007\/s12152-018-9375-6"},{"key":"S1478951526101965_ref48","doi-asserted-by":"publisher","DOI":"10.1111\/j.1467-9566.2009.01176.x"},{"key":"S1478951526101965_ref66","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2020-044724"},{"key":"S1478951526101965_ref76","doi-asserted-by":"publisher","DOI":"10.1007\/s11060-017-2542-5"},{"key":"S1478951526101965_ref79","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0306102"},{"key":"S1478951526101965_ref27","doi-asserted-by":"publisher","DOI":"10.3233\/JND-200537"},{"key":"S1478951526101965_ref83","doi-asserted-by":"publisher","DOI":"10.15766\/mep_2374-8265.10493"},{"key":"S1478951526101965_ref43","doi-asserted-by":"publisher","DOI":"10.1007\/978-1-4614-6812-7_8"},{"key":"S1478951526101965_ref44","doi-asserted-by":"publisher","DOI":"10.1016\/S0079-6123(05)50034-7"},{"key":"S1478951526101965_ref47","doi-asserted-by":"publisher","DOI":"10.1177\/1742395312443390"},{"key":"S1478951526101965_ref57","doi-asserted-by":"publisher","DOI":"10.7812\/TPP\/07-088"},{"key":"S1478951526101965_ref28","first-page":"225","article-title":"Subjective experience and coping in ALS","volume":"3","author":"Hecht","year":"2002","journal-title":"ALS and Other Motor Neuron Disorders"},{"key":"S1478951526101965_ref38","doi-asserted-by":"publisher","DOI":"10.1007\/978-3-031-17650-0_14"},{"key":"S1478951526101965_ref68","doi-asserted-by":"publisher","DOI":"10.1016\/j.colegn.2019.02.002"},{"key":"S1478951526101965_ref20","first-page":"203","article-title":"Stories for life: Introduction to narrative medicine","volume":"53","author":"Divinsky","year":"2007","journal-title":"Can Fam Physician"},{"key":"S1478951526101965_ref71","doi-asserted-by":"publisher","DOI":"10.1177\/1049732315584744"},{"key":"S1478951526101965_ref34","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2022-056862"},{"key":"S1478951526101965_ref84","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2017.0007"},{"key":"S1478951526101965_ref62","doi-asserted-by":"publisher","DOI":"10.1177\/0269216311398697"},{"key":"S1478951526101965_ref36","unstructured":"Kheirbek, R , Marr, B , and Herr, D (2019) Listening to their heart: A randomized trial of narrative medicine. Abstract of the American Heart Association's Scientific Sessions 2019 . Circulation 140(s1)."},{"key":"S1478951526101965_ref24","doi-asserted-by":"publisher","DOI":"10.1111\/jasp.12717"},{"key":"S1478951526101965_ref63","doi-asserted-by":"publisher","DOI":"10.1097\/JNN.0000000000000054"},{"key":"S1478951526101965_ref70","doi-asserted-by":"publisher","DOI":"10.1080\/01459740.2015.1012614"},{"key":"S1478951526101965_ref78","volume-title":"The Health of Informal Carers","author":"Spackman","year":"1991"},{"key":"S1478951526101965_ref45","doi-asserted-by":"crossref","first-page":"23","DOI":"10.1111\/1467-9566.00338","article-title":"Lay experiences of health and illness: Past research and future agendas","volume":"25","author":"Lawton","year":"2003","journal-title":"Sociology of Health and Illness"},{"key":"S1478951526101965_ref82","doi-asserted-by":"publisher","DOI":"10.1111\/1467-9566.00191"},{"key":"S1478951526101965_ref23","doi-asserted-by":"publisher","DOI":"10.3109\/21678421.2016.1143512"},{"key":"S1478951526101965_ref64","doi-asserted-by":"publisher","DOI":"10.1186\/s12913-024-11530-x"},{"key":"S1478951526101965_ref40","volume-title":"Dying with Dignity","author":"Krant","year":"1974"},{"key":"S1478951526101965_ref53","doi-asserted-by":"publisher","DOI":"10.1089\/acm.2020.0449"},{"key":"S1478951526101965_ref42","volume-title":"Narrative-based Primary Care","author":"Launer","year":"2002"},{"key":"S1478951526101965_ref14","doi-asserted-by":"publisher","DOI":"10.1097\/ACM.0000000000000827"},{"key":"S1478951526101965_ref2","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0096888"},{"key":"S1478951526101965_ref49","doi-asserted-by":"publisher","DOI":"10.7812\/TPP\/23.116"},{"key":"S1478951526101965_ref69","doi-asserted-by":"publisher","DOI":"10.1056\/NEJM200105313442207"},{"key":"S1478951526101965_ref1","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2014.0213"},{"key":"S1478951526101965_ref11","first-page":"1265","article-title":"What to do with stories: The sciences of narrative medicine","volume":"53","author":"Charon","year":"2007","journal-title":"Canadian Family Physician"},{"key":"S1478951526101965_ref37","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2702.2008.02671.x"},{"key":"S1478951526101965_ref52","doi-asserted-by":"publisher","DOI":"10.1007\/978-0-387-89825-4"},{"key":"S1478951526101965_ref5","doi-asserted-by":"publisher","DOI":"10.1111\/1467-9566.00252"},{"key":"S1478951526101965_ref10","doi-asserted-by":"publisher","DOI":"10.1093\/oso\/9780195166750.001.0001"},{"key":"S1478951526101965_ref3","doi-asserted-by":"publisher","DOI":"10.1177\/082585970101700403"},{"key":"S1478951526101965_ref7","unstructured":"Centers for Disease Control and Prevention (CDC) (2024) About amyotrophic lateral sclerosis (ALS). https:\/\/www.cdc.gov\/als\/abouttheregistrymain\/about-amyotrophic-lateral-sclerosis-als.html (accessed 11 May 2025 )."},{"key":"S1478951526101965_ref30","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2524.2005.00530.x"},{"key":"S1478951526101965_ref58","unstructured":"National Institute of Neurological Disorders and Stroke (NINDS) (2024) Amyotrophic lateral sclerosis (ALS). Available at https:\/\/www.ninds.nih.gov\/health-information\/disorders\/amyotrophic-lateral-sclerosis-als#:\u223c:text=Amyotrophic%20lateral%20sclerosis%20(ALS)%2C,voluntary%20muscle%20movement%20and%20breathing. (Accessed 4 May 2025 )."},{"key":"S1478951526101965_ref32","unstructured":"Jones, P (2020) For your information: Epidemiology of ALS and suspected clusters. Available at https:\/\/www.als.org\/navigating-als\/resources\/fyi-epidemiology-als-and-suspected-clusters. (accessed 11 May 2025 )."},{"key":"S1478951526101965_ref15","doi-asserted-by":"publisher","DOI":"10.1001\/jama.287.17.2253"},{"key":"S1478951526101965_ref21","doi-asserted-by":"publisher","DOI":"10.1038\/s41598-022-19651-1"},{"key":"S1478951526101965_ref26","first-page":"3","volume-title":"Narrative Based Medicine: Dialogue and Discourse in Clinical Practice","author":"Greenhalgh","year":"1998"},{"key":"S1478951526101965_ref81","doi-asserted-by":"publisher","DOI":"10.1177\/0269216311410900"},{"key":"S1478951526101965_ref18","doi-asserted-by":"publisher","DOI":"10.1016\/0277-9536(86)90111-5"},{"key":"S1478951526101965_ref75","doi-asserted-by":"publisher","DOI":"10.1016\/j.hrtlng.2018.09.013"},{"key":"S1478951526101965_ref73","doi-asserted-by":"publisher","DOI":"10.3167\/cja.2021.390210"},{"key":"S1478951526101965_ref4","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2648.2007.04588.x"},{"key":"S1478951526101965_ref72","doi-asserted-by":"publisher","DOI":"10.1177\/1049732313508014"},{"key":"S1478951526101965_ref77","doi-asserted-by":"publisher","DOI":"10.1016\/j.seizure.2021.01.017"},{"key":"S1478951526101965_ref80","doi-asserted-by":"publisher","DOI":"10.7812\/TPP\/19.056"},{"key":"S1478951526101965_ref31","doi-asserted-by":"publisher","DOI":"10.1007\/s40271-014-0088-6"},{"key":"S1478951526101965_ref74","doi-asserted-by":"publisher","DOI":"10.1016\/j.rehab.2016.07.337"},{"key":"S1478951526101965_ref25","unstructured":"Gibson, L (2021) Notes on doctoring. Harvard Magazine , 7 December. https:\/\/www.harvardmagazine.com\/2021\/12\/alumni-michael-stanley (accessed 23 February 2026)."},{"key":"S1478951526101965_ref16","doi-asserted-by":"publisher","DOI":"10.1097\/PHM.0000000000000978"},{"key":"S1478951526101965_ref51","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2011.10.036"},{"key":"S1478951526101965_ref56","doi-asserted-by":"publisher","DOI":"10.1080\/08870446.2013.770513"},{"key":"S1478951526101965_ref39","first-page":"32","volume-title":"The Dying Patient","author":"Knutson","year":"1970"}],"container-title":["Palliative and Supportive Care"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.cambridge.org\/core\/services\/aop-cambridge-core\/content\/view\/S1478951526101965","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,3,5]],"date-time":"2026-03-05T14:44:24Z","timestamp":1772721864000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.cambridge.org\/core\/product\/identifier\/S1478951526101965\/type\/journal_article"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026]]},"references-count":86,"alternative-id":["S1478951526101965"],"URL":"https:\/\/doi.org\/10.1017\/s1478951526101965","relation":{},"ISSN":["1478-9515","1478-9523"],"issn-type":[{"value":"1478-9515","type":"print"},{"value":"1478-9523","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026]]},"assertion":[{"value":"\u00a9 The Author(s), 2026. Published by Cambridge University Press.","name":"copyright","label":"Copyright","group":{"name":"copyright_and_licensing","label":"Copyright and Licensing"}},{"value":"This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http:\/\/creativecommons.org\/licenses\/by\/4.0), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited.","name":"license","label":"License","group":{"name":"copyright_and_licensing","label":"Copyright and Licensing"}},{"value":"This content has been made available to all.","name":"free","label":"Free to read"}],"article-number":"e81"}}