{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,22]],"date-time":"2026-10-22T11:39:22Z","timestamp":1792669162050,"version":"4.5.0"},"reference-count":39,"publisher":"SAGE Publications","issue":"13","license":[{"start":{"date-parts":[[2026,3,9]],"date-time":"2026-03-09T00:00:00Z","timestamp":1773014400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["J Health Psychol"],"published-print":{"date-parts":[[2026,11]]},"abstract":"<jats:p>\n                    Amyotrophic Lateral Sclerosis (ALS) is a rare, incurable neurodegenerative disease that leads to death within 5\u2009years of diagnosis and greatly impacts patients\u2019 and caregivers\u2019 quality of life (QoL). Typically leading to death within 5\u2009years, ALS underscores the need for emotional and psychological support. This study analyzes 118 testimonies from patients (\n                    <jats:italic toggle=\"yes\">n<\/jats:italic>\n                    \u2009=\u200967), informal caregivers (\n                    <jats:italic toggle=\"yes\">n<\/jats:italic>\n                    \u2009=\u200941), and formal caregivers (\n                    <jats:italic toggle=\"yes\">n<\/jats:italic>\n                    \u2009=\u200910), with a gender-balanced sample (\n                    <jats:italic toggle=\"yes\">n<\/jats:italic>\n                    \u2009=\u200967 women), using discourse analysis. Narratives reveal a complex emotional landscape of suffering and resilience, showing ALS as a disruptive force that prompts reevaluation of roles and life stories. Shared support is crucial within families and social settings. Many testimonies express a desire to raise awareness and fund research. Understanding ALS through these stories offers insights into the psychological, emotional, cultural, and social challenges, essential for developing tailored interventions to support psychological well-being.\n                  <\/jats:p>","DOI":"10.1177\/13591053261424031","type":"journal-article","created":{"date-parts":[[2026,3,11]],"date-time":"2026-03-11T17:03:17Z","timestamp":1773248597000},"page":"5311-5326","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":1,"title":["\u201c\n                    <i>A rough and swirling sea<\/i>\n                    \u201d: Voicing Amyotrophic Lateral Sclerosis through discourse analysis"],"prefix":"10.1177","volume":"31","author":[{"ORCID":"https:\/\/orcid.org\/0009-0001-5487-3507","authenticated-orcid":false,"given":"Elisa","family":"Zambetti","sequence":"first","affiliation":[{"name":"Universit\u00e0 degli studi di Bergamo, Dipartimento di Scienze Umane e Sociali, Bergamo, Italia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8086-2801","authenticated-orcid":false,"given":"Andrea","family":"Greco","sequence":"additional","affiliation":[{"name":"Universit\u00e0 degli studi di Bergamo, Dipartimento di Scienze Umane e Sociali, Bergamo, Italia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Clara","family":"Mucci","sequence":"additional","affiliation":[{"name":"Universit\u00e0 degli studi di Bergamo, Dipartimento di Scienze Umane e Sociali, Bergamo, Italia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8934-7569","authenticated-orcid":false,"given":"Simone","family":"Belli","sequence":"additional","affiliation":[{"name":"Universidad Complutense de Madrid, Facultad de Ciencias Pol\u00edticas y Sociolog\u00eda, Madrid, Espa\u00f1a"},{"name":"Universidad Ecotec, Samborondon, Ecuador"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2026,3,9]]},"reference":[{"key":"e_1_3_3_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.neurobiolaging.2014.05.035"},{"key":"e_1_3_3_3_1","doi-asserted-by":"publisher","DOI":"10.5465\/amr.2007.26586822"},{"key":"e_1_3_3_4_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2648.2001.01767.x"},{"key":"e_1_3_3_5_1","doi-asserted-by":"publisher","DOI":"10.1097\/NCC.0b013e31824afadf"},{"key":"e_1_3_3_6_1","first-page":"61","article-title":"La medicina narrativa nella formazione dei professionisti sanitari","volume":"9","author":"Bert G","year":"2009","unstructured":"Bert G (2009) La medicina narrativa nella formazione dei professionisti sanitari. 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