{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,11,24]],"date-time":"2025-11-24T12:42:24Z","timestamp":1763988144344,"version":"3.40.5"},"reference-count":27,"publisher":"Public Library of Science (PLoS)","issue":"2","license":[{"start":{"date-parts":[[2021,2,3]],"date-time":"2021-02-03T00:00:00Z","timestamp":1612310400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Guillain-Barr\u00e9 & Associated Inflammatory Neuropathies (GAIN) Charity"}],"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>Guillain-Barr\u00e9 syndrome (GBS) is an immune-mediated polyradiculoneuropathy, with an incidence of 1-2\/100,000 per year. Its severity is variable, ranging from very mild cases with brief weakness to severe paralysis, leading to inability to breathe independently, or even death. Currently there is limited evidence exploring the experiences of GBS patients. The aim of this study was to review patients\u2019 experiences and perceptions of GBS and its variants at diagnosis, discharge and during recovery, by conducting a systematic review and thematic meta-synthesis of qualitative studies of patients\u2019 experiences of GBS (and its variants).<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"sec002\">\n<jats:title>Methods<\/jats:title>\n<jats:p>We searched twelve electronic databases, supplemented with internet searches and forward and backward citation tracking from the included studies and review articles. Data were synthesised thematically following the Thomas and Harden approach. The CASP Qualitative Checklist was used to assess the quality of the included studies of this review.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"sec003\">\n<jats:title>Results<\/jats:title>\n<jats:p>Our search strategy identified a total of 5,282 citations and after removing duplicates and excluding citations based on title and abstract, and full-text screening, five studies were included in the review and meta-synthesis; all included studies were considered of acceptable quality. Through constant discussions and an iterative approach, we developed six analytical themes following a patient\u2019s journey from suspecting that they had a health problem, through to being hospitalised, experiencing ongoing difficulties, slowly recovering from GBS, adjusting to their new circumstances, and re-evaluating their lives.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"sec004\">\n<jats:title>Conclusions<\/jats:title>\n<jats:p>Despite the variety of experiences, it was evident from all included studies that being diagnosed with and surviving GBS was a life-changing experience for all participants.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"sec005\">\n<jats:title>Trial registration<\/jats:title>\n<jats:p>Protocol was registered (<jats:ext-link xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" ext-link-type=\"uri\" xlink:href=\"http:\/\/www.crd.york.ac.uk\/PROSPERO\/display_record.php?ID=CRD42019122199\" xlink:type=\"simple\">CRD42019122199<\/jats:ext-link>) on the International Prospective Register of Systematic Reviews (<jats:ext-link xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" ext-link-type=\"uri\" xlink:href=\"http:\/\/www.crd.york.ac.uk\/PROSPERO\" xlink:type=\"simple\">http:\/\/www.crd.york.ac.uk\/PROSPERO<\/jats:ext-link>).<\/jats:p>\n<\/jats:sec>","DOI":"10.1371\/journal.pone.0245826","type":"journal-article","created":{"date-parts":[[2021,2,3]],"date-time":"2021-02-03T19:12:15Z","timestamp":1612379535000},"page":"e0245826","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":6,"title":["Patients\u2019 experiences and perceptions of Guillain-Barr\u00e9 syndrome: A systematic review and meta-synthesis of qualitative research"],"prefix":"10.1371","volume":"16","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5427-7422","authenticated-orcid":true,"given":"Despina","family":"Laparidou","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6843-8568","authenticated-orcid":true,"given":"Ffion","family":"Curtis","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Joseph","family":"Akanuwe","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jennifer","family":"Jackson","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Timothy L.","family":"Hodgson","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"A. Niroshan","family":"Siriwardena","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"340","published-online":{"date-parts":[[2021,2,3]]},"reference":[{"issue":"2","key":"pone.0245826.ref001","doi-asserted-by":"crossref","first-page":"123","DOI":"10.1159\/000324710","article-title":"Population incidence of Guillain-Barre syndrome: a systematic review and meta-analysis","volume":"36","author":"JJ Sejvar","year":"2011","journal-title":"Neuroepidemiology"},{"key":"pone.0245826.ref002","unstructured":"National Institute of Neurological Disorders and Stroke. Guillain-Barr\u00e9 Syndrome Fact Sheet. 2018; Retrieved October 02, 2019, from https:\/\/www.ninds.nih.gov\/Disorders\/Patient-Caregiver-Education\/Fact-Sheets\/Guillain-Barr%C3%A9-Syndrome-Fact-Sheet"},{"key":"pone.0245826.ref003","doi-asserted-by":"crossref","first-page":"717","DOI":"10.1016\/S0140-6736(16)00339-1","article-title":"Guillain-Barr\u00e9 syndrome","volume":"388","author":"HJ Willison","year":"2016","journal-title":"Lancet"},{"key":"pone.0245826.ref004","doi-asserted-by":"crossref","first-page":"51","DOI":"10.1111\/j.1600-0404.2005.00429.x","article-title":"How Guillain\u2013Barre patients experience their functioning after 1 year","volume":"112","author":"RAJAM Bernsen","year":"2015","journal-title":"Acta Neurol Scand"},{"key":"pone.0245826.ref005","doi-asserted-by":"crossref","first-page":"121","DOI":"10.1111\/jns5.12068","article-title":"Long-term outcome of Guillain-Barr\u00e9 syndrome in children","volume":"19","author":"J Roodbol","year":"2014","journal-title":"J Peripher Nerv Syst"},{"key":"pone.0245826.ref006","doi-asserted-by":"crossref","first-page":"214","DOI":"10.1007\/s00415-005-0958-x","article-title":"Long term disability and social status change after Guillain-Barr\u00e9 syndrome","volume":"253","author":"A Bersano","year":"2006","journal-title":"J Neurol"},{"key":"pone.0245826.ref007","doi-asserted-by":"crossref","first-page":"2024","DOI":"10.1007\/s00415-010-5653-x","article-title":"Factors associated with long-term functional outcomes and psychological sequelae in Guillain\u2013Barre syndrome","volume":"257","author":"F Khan","year":"2010","journal-title":"J Neurol"},{"key":"pone.0245826.ref008","doi-asserted-by":"crossref","first-page":"230","DOI":"10.1080\/16501970600582997","article-title":"Use of healthcare, patient satisfaction and burden of care in Guillain-Barr\u00e9 syndrome","volume":"38","author":"A Forsberg","year":"2006","journal-title":"J Rehabil Med"},{"issue":"1","key":"pone.0245826.ref009","doi-asserted-by":"crossref","first-page":"24","DOI":"10.1111\/jns5.12051","article-title":"Health-related quality of life in Guillain-Barre syndrome patients: a systematic review","volume":"19","author":"SK Darweesh","year":"2014","journal-title":"J Peripher Nerv Syst"},{"issue":"3","key":"pone.0245826.ref010","first-page":"155","article-title":"A nursing model for chronic illness management based upon the Trajectory Framework","volume":"5","author":"JM Corbin","year":"1991","journal-title":"Sch Inq Nurs Pract"},{"issue":"11","key":"pone.0245826.ref011","doi-asserted-by":"crossref","first-page":"1161","DOI":"10.1037\/0003-066X.38.11.1161","article-title":"Adjustment to Threatening Events: A Theory of Cognitive Adaptation","volume":"38","author":"SE Taylor","year":"1983","journal-title":"Am Psychol"},{"key":"pone.0245826.ref012","doi-asserted-by":"crossref","first-page":"181","DOI":"10.1186\/1471-2288-12-181","article-title":"Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ","volume":"12","author":"A Tong","year":"2012","journal-title":"BMC Med Res Methodol"},{"key":"pone.0245826.ref013","article-title":"Patient experiences and perceptions of Guillain-Barre Syndrome and associated inflammatory neuropathies following discharge from hospital","author":"F Curtis","year":"2019","journal-title":"PROSPERO 2019 CRD42019122199"},{"key":"pone.0245826.ref014","doi-asserted-by":"crossref","first-page":"45","DOI":"10.1186\/1471-2288-8-45","article-title":"Methods for the thematic synthesis of qualitative research in systematic reviews","volume":"8","author":"J Thomas","year":"2008","journal-title":"BMC Med Res Methodol"},{"key":"pone.0245826.ref015","unstructured":"Critical Appraisal Skills Programme. CASP Qualitative Checklist. 2019. [Online] Available at: https:\/\/casp-uk.net\/casp-tools-checklists\/ Accessed: 21\/01\/2019."},{"issue":"4","key":"pone.0245826.ref016","doi-asserted-by":"crossref","first-page":"105","DOI":"10.1002\/j.2048-7940.2003.tb01726.x","article-title":"The recovery phase in Guillain-Barre syndrome: moving from dependency to independence","volume":"28","author":"JF Cooke","year":"2003","journal-title":"Rehabil Nurs"},{"issue":"2","key":"pone.0245826.ref017","doi-asserted-by":"crossref","first-page":"220","DOI":"10.1111\/j.1471-6712.2007.00517.x","article-title":"Falling ill with Guillain-Barre syndrome: patients' experiences during the initial phase.","volume":"22","author":"A Forsberg","year":"2008","journal-title":"Scand J Caring Sci"},{"issue":"6","key":"pone.0245826.ref018","doi-asserted-by":"crossref","first-page":"601","DOI":"10.1177\/0269215514549564","article-title":"Balancing everyday life two years after falling ill with Guillain-Barre syndrome: a qualitative study","volume":"29","author":"A Forsberg","year":"2015","journal-title":"Clin Rehabil"},{"issue":"22","key":"pone.0245826.ref019","doi-asserted-by":"crossref","first-page":"1817","DOI":"10.1080\/09638280902822294","article-title":"What are the experiences of adults returning to work following recovery from Guillain-Barre syndrome? An interpretative phenomenological analysis","volume":"31","author":"E Royal","year":"2009","journal-title":"Disabil Rehabil"},{"key":"pone.0245826.ref020","unstructured":"*Hooks JD. Understanding the patient\u2019s recalled experience of an acute episode of Guillain-Barre syndrome: a qualitative descriptive study (Unpublished doctoral dissertation). 2015. University of Kansas, Kansas, USA."},{"key":"pone.0245826.ref021","doi-asserted-by":"crossref","first-page":"384","DOI":"10.1002\/mus.24772","article-title":"Factors contributing to delay in diagnosis of Guillain-Barr\u00e9 syndrome and impact on clinical outcome","volume":"53","author":"D Dubey","year":"2015","journal-title":"Muscle Nerve"},{"key":"pone.0245826.ref022","doi-asserted-by":"crossref","first-page":"123","DOI":"10.1016\/0266-612X(87)90105-2","article-title":"Guillain-Barr\u00e9 syndrome- patients\u2019 and nurses\u2019 perspectives","volume":"2","author":"E Uprichard","year":"1987","journal-title":"Intensive Care Nursing"},{"key":"pone.0245826.ref023","doi-asserted-by":"crossref","first-page":"74","DOI":"10.1159\/000047956","article-title":"Psychotic Symptoms and Emotional Distress in Patients with Guillain-Barr\u00e9 Syndrome","volume":"47","author":"H Weiss","year":"2002","journal-title":"Eur Neurol"},{"issue":"3","key":"pone.0245826.ref024","first-page":"143","article-title":"Perceived Benefits of Peer Support Groups for Stroke Survivors and Caregivers in Rural North Carolina","volume":"80","author":"ER Christensen","year":"2019","journal-title":"N C Med J"},{"key":"pone.0245826.ref025","doi-asserted-by":"crossref","first-page":"256","DOI":"10.1186\/1472-6963-14-256","article-title":"Peer support for stroke survivors: a case study","volume":"14","author":"D Kessler","year":"2014","journal-title":"BMC Health Serv Res"},{"issue":"4","key":"pone.0245826.ref026","doi-asserted-by":"crossref","first-page":"262","DOI":"10.4103\/0972-2327.91942","article-title":"Mortality in mechanically ventilated patients of Guillain-Barr\u00e9 Syndrome","volume":"14","author":"AB Netto","year":"2011","journal-title":"Ann Indian Acad Neurol"},{"key":"pone.0245826.ref027","unstructured":"A Booth (personal communication, April 28, 2020)."}],"container-title":["PLOS ONE"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0245826","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2021,2,3]],"date-time":"2021-02-03T19:12:43Z","timestamp":1612379563000},"score":1,"resource":{"primary":{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0245826"}},"subtitle":[],"editor":[{"given":"Kathleen","family":"Finlayson","sequence":"first","affiliation":[],"role":[{"role":"editor","vocabulary":"crossref"}]}],"short-title":[],"issued":{"date-parts":[[2021,2,3]]},"references-count":27,"journal-issue":{"issue":"2","published-online":{"date-parts":[[2021,2,3]]}},"URL":"https:\/\/doi.org\/10.1371\/journal.pone.0245826","relation":{},"ISSN":["1932-6203"],"issn-type":[{"type":"electronic","value":"1932-6203"}],"subject":[],"published":{"date-parts":[[2021,2,3]]}}}