{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,3]],"date-time":"2026-01-03T06:48:36Z","timestamp":1767422916036,"version":"3.41.2"},"reference-count":66,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2024,12,13]],"date-time":"2024-12-13T00:00:00Z","timestamp":1734048000000},"content-version":"vor","delay-in-days":12,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2024,12]]},"abstract":"<jats:title>ABSTRACT<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Disorders of consciousness (DoC) refers to a group of clinical conditions of altered consciousness. To improve their diagnosis and prognosis, multimodal assessment can be of great importance. Informal caregivers of people with DoC who are confronted with new technologies as such can benefit from interventions to expand their health literacy, i.e., the ability to use information to make health decisions for oneself and others.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>We developed an information brochure on multimodal assessment for DoC in a participatory process, with decisions made by a steering group. The process was based on a methodological framework for the development of patient decision aids that built on the International Patient Decision Aid Standards (IPDAS).<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>On the background of a broad variety of needs, the priority was to focus on the explanation of multimodal testing and provide information about its uncertainty. Its development aimed at enhancing informal caregivers' understanding of implications of results from multimodal assessment and its relevance for prognosis. It should avoid the portrayal of information that could lead to the impression of false hope or suboptimal rehabilitation care. Informal caregivers rated its usability and acceptability highly, though they preferred less technical language.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>The participatory process was crucial to the project. Future studies should investigate the effectiveness of the brochure in fostering informal caregivers' health literacy.<\/jats:p><\/jats:sec><jats:sec><jats:title>Patient or Public Contribution<\/jats:title><jats:p>Informal caregivers of people with DoC were deliberately included in the steering group and they participated in a field test of the prototype brochure.<\/jats:p><\/jats:sec>","DOI":"10.1111\/hex.70097","type":"journal-article","created":{"date-parts":[[2024,12,14]],"date-time":"2024-12-14T05:38:34Z","timestamp":1734154714000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Participatory Development of an International Information Brochure on the Multimodal Assessment of Disorders of Consciousness"],"prefix":"10.1111","volume":"27","author":[{"given":"Melissa","family":"Hohl","sequence":"first","affiliation":[{"name":"Institute for Medical Information Processing, Biometry, and Epidemiology \u2013 IBE, LMU Munich  Munich Germany"},{"name":"Chair of Public Health and Health Services Research, LMU Munich Pettenkofer School of Public Health  Munich Germany"},{"name":"Department of Neurology LMU University Hospital, LMU Munich  Munich Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6532-5725","authenticated-orcid":false,"given":"Lina","family":"Willacker","sequence":"additional","affiliation":[{"name":"Department of Neurology LMU University Hospital, LMU Munich  Munich Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Theresa Marie","family":"Raiser","sequence":"additional","affiliation":[{"name":"Department of Neurology LMU University Hospital, LMU Munich  Munich Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Martin Justinus","family":"Rosenfelder","sequence":"additional","affiliation":[{"name":"Department of Neurology LMU University Hospital, LMU Munich  Munich Germany"},{"name":"Therapiezentrum Burgau, Hospital for Neurological Rehabilitation Burgau Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Katja","family":"Kuehlmeyer","sequence":"additional","affiliation":[{"name":"Institute of Ethics, History and Theory of Medicine, LMU Munich  Munich Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Marta","family":"Bassi","sequence":"additional","affiliation":[{"name":"Department of Biomedical and Clinical Sciences University of Milano Milan Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Angela","family":"Comanducci","sequence":"additional","affiliation":[{"name":"IRCCS Fondazione Don Carlo Gnocchi ONLUS Milan Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Chiara","family":"Valota","sequence":"additional","affiliation":[{"name":"Department of Biomedical and Clinical Sciences University of Milano Milan Italy"},{"name":"IRCCS Fondazione Don Carlo Gnocchi ONLUS Milan Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jacobo Diego","family":"Sitt","sequence":"additional","affiliation":[{"name":"Institut du Cerveau \u2013 Paris Brain Institute \u2013 ICM Sorbonne Universit\u00e9, Inserm, CNRS Paris France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Andreas","family":"Bender","sequence":"additional","affiliation":[{"name":"Department of Neurology LMU University Hospital, LMU Munich  Munich Germany"},{"name":"Therapiezentrum Burgau, Hospital for Neurological Rehabilitation Burgau Germany"},{"name":"Department Neurorehabilitation Medical Faculty, University of Augsburg Augsburg German"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2024,12,13]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.1007\/978-3-642-18047-7_2"},{"key":"e_1_2_12_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/ene.12483"},{"key":"e_1_2_12_4_1","doi-asserted-by":"publisher","DOI":"10.1212\/wnl.58.3.349"},{"key":"e_1_2_12_5_1","doi-asserted-by":"publisher","DOI":"10.1002\/acn3.52061"},{"key":"e_1_2_12_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.clinph.2020.07.015"},{"key":"e_1_2_12_7_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000005926"},{"key":"e_1_2_12_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/ene.14151"},{"key":"e_1_2_12_9_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41586-020-2245-5"},{"key":"e_1_2_12_10_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMoa0905370"},{"key":"e_1_2_12_11_1","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2377-9-35"},{"key":"e_1_2_12_12_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12883-020-01924-9"},{"key":"e_1_2_12_13_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12883-022-02958-x"},{"key":"e_1_2_12_14_1","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2458-12-80"},{"key":"e_1_2_12_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jns.2022.120525"},{"key":"e_1_2_12_16_1","doi-asserted-by":"publisher","DOI":"10.1111\/hsc.12368"},{"key":"e_1_2_12_17_1","doi-asserted-by":"publisher","DOI":"10.2196\/jmir.7027"},{"key":"e_1_2_12_18_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.39246.581169.80"},{"key":"e_1_2_12_19_1","doi-asserted-by":"publisher","DOI":"10.1186\/1472-6947-13-S2-S2"},{"key":"e_1_2_12_20_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.38926.629329.AE"},{"key":"e_1_2_12_21_1","doi-asserted-by":"publisher","DOI":"10.1016\/B978-0-12-814449-7.00003-X"},{"key":"e_1_2_12_22_1","doi-asserted-by":"publisher","DOI":"10.1093\/pubmed\/fdr015"},{"key":"e_1_2_12_23_1","unstructured":"EBSCOhost\u2010Rechercheplattform | EBSCO accessed August 22 2024 https:\/\/www.ebsco.com\/de-de\/produkte\/ebscohost-rechercheplattform."},{"key":"e_1_2_12_24_1","unstructured":"\u201cIPC Health \u201dHealth Literacy Guide: Making Client Resources Easy to Use and Understand Published online2017 https:\/\/s0.whitepages.com.au\/e4eac853-40b9-431d-a994-5dd512ac8d25\/ipc-health-document.pdf."},{"key":"e_1_2_12_25_1","unstructured":"J.L\u00fchnen M.Albrecht I.M\u00fchlhauser andA.Steckelberg \u201cLeitlinie evidenzbasierte Gesundheitsinformation \u201dPublished online2017 https:\/\/www.ebm-netzwerk.de\/de\/medien\/pdf\/leitlinie-evidenzbasierte-gesundheitsinformation-fin.pdf."},{"key":"e_1_2_12_26_1","doi-asserted-by":"publisher","DOI":"10.1136\/fmch-2020-000351"},{"key":"e_1_2_12_27_1","unstructured":"M. Q.PattonQualitative Evaluation and Research Methods 2nd ed. (Thousand Oaks California:Sage Publications Inc. 1990)."},{"key":"e_1_2_12_28_1","doi-asserted-by":"publisher","DOI":"10.1093\/eurpub\/ckw229"},{"key":"e_1_2_12_29_1","doi-asserted-by":"publisher","DOI":"10.1037\/rep0000330"},{"key":"e_1_2_12_30_1","doi-asserted-by":"publisher","DOI":"10.4119\/UNIBI\/2950305"},{"key":"e_1_2_12_31_1","doi-asserted-by":"crossref","unstructured":"P.Mayring Qualitative Content Analysis: Theoretical Foundation Basic Procedures and Software Solution 2014 https:\/\/www.ssoar.info\/ssoar\/bitstream\/handle\/document\/39517\/ssoar-2014-mayring-Qualitative_content_analysis_theoretical_foundation.pdf.","DOI":"10.1007\/978-94-017-9181-6_13"},{"key":"e_1_2_12_32_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12152-022-09503-0"},{"key":"e_1_2_12_33_1","doi-asserted-by":"publisher","DOI":"10.1080\/02699052.2016.1225987"},{"key":"e_1_2_12_34_1","doi-asserted-by":"publisher","DOI":"10.3233\/NRE-2010-0577"},{"key":"e_1_2_12_35_1","doi-asserted-by":"publisher","DOI":"10.1097\/JTN.0b013e318275990d"},{"key":"e_1_2_12_36_1","doi-asserted-by":"publisher","DOI":"10.3109\/02699052.2012.667589"},{"key":"e_1_2_12_37_1","doi-asserted-by":"publisher","DOI":"10.1080\/02699050010025759"},{"key":"e_1_2_12_38_1","doi-asserted-by":"publisher","DOI":"10.3109\/17549507.2011.549240"},{"key":"e_1_2_12_39_1","doi-asserted-by":"publisher","DOI":"10.1188\/11.ONF.353-359"},{"key":"e_1_2_12_40_1","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2012.0046"},{"key":"e_1_2_12_41_1","doi-asserted-by":"publisher","DOI":"10.1080\/02699052.2017.1346291"},{"key":"e_1_2_12_42_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12207-019-09369-3"},{"issue":"3","key":"e_1_2_12_43_1","first-page":"228","article-title":"Factors Affecting Decisions Made by Family Members of Patients With Severe Head Injury","volume":"20","author":"Mirr M. P.","year":"1991","journal-title":"Heart & Lung: The Journal of Critical Care"},{"key":"e_1_2_12_44_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00103-009-0839-z"},{"key":"e_1_2_12_45_1","unstructured":"\u201cBrain Injury Association of America \u201dChallenges Changes and Choices: A Brain Injury Guide for Families and Caregivers https:\/\/www.biausa.org\/wp-content\/uploads\/Guide-for-Families-and-Caregivers-1.pdf."},{"key":"e_1_2_12_46_1","unstructured":"\u201cBundesverband Sch\u00e4del\u2010Hirnpatienten in Not e.V. Deutsche Wachkomagesellschaft \u201dErstinformation f\u00fcr Angeh\u00f6rige von Menschen mit Sch\u00e4del\u2010Hirnverletzungen im Koma oder Wachkoma und danach 2. Auflage."},{"key":"e_1_2_12_47_1","unstructured":"\u201cCalifornia Pacific Regional Rehabilitation Center and the CPMC Foundation \u201dBrain Injury Information Handbook: A Guide for Patients and Families from Hospital to Home Published online2014 https:\/\/schurigcenter.org\/wp-content\/uploads\/2017\/09\/Schurig-Center-BINBA-Brain-Injury-Handbook.pdf."},{"key":"e_1_2_12_48_1","unstructured":"\u201cDefense and Veterans Brain Injury Center \u201dTraumatic Brain Injury: A Guide for Caregivers of Service Members and Veterans Published online2010 https:\/\/www.brainline.org\/sites\/default\/files\/DVBICFamilyCaregiverCurriculum_Full.pdf."},{"key":"e_1_2_12_49_1","unstructured":"\u201cDelaware Health and Social Services Division of Services for Aging and Adults With Physical Disabilities Coma Task Force \u201dComa Guide for Caregivers https:\/\/www.dhss.delaware.gov\/dhss\/dsaapd\/files\/coma_guide.pdf."},{"key":"e_1_2_12_50_1","unstructured":"\u201cFachgruppe Sozialarbeit der Landesarbeitsgemeinschaft Phase F Sachsen \u201dLeitfaden der LAG Phase F Sachsen f\u00fcr Angeh\u00f6rige von Menschen im Wachkoma https:\/\/lag-wachkoma-sachsen.de\/dokument\/Leitfaden_der_LAG_Phase_F_Sachsen_1470220358_2853.pdf."},{"key":"e_1_2_12_51_1","unstructured":"\u201cFreie und Hansestadt Hamburg. Beh\u00f6rde f\u00fcr Gesundheit und Verbraucherschutz \u201dSchwerste Sch\u00e4del\u2010Hirnverletzungen und Wachkoma: Ein Ratgeber f\u00fcr Angeh\u00f6rige und Beratungseinrichtungen Published online2013."},{"key":"e_1_2_12_52_1","unstructured":"\u201cZNS\u2010 Hannelore Kohl Stiftung \u201dInformationen f\u00fcr Angeh\u00f6rige von Menschen im Koma und Wachkoma Published online2021 https:\/\/www.hannelore-kohl-stiftung.de\/uploads\/tx_ttproducts\/datasheet\/2-ZNS_Ratgeber_Wachkoma_2021.pdf."},{"key":"e_1_2_12_53_1","unstructured":"\u201cZNS\u2010 Hannelore Kohl Stiftung \u201dDas schwere Sch\u00e4delhirntrauma Published online2021 https:\/\/www.hannelore-kohl-stiftung.de\/uploads\/tx_ttproducts\/datasheet\/Das_schwere_Schaedelhirntrauma_01.pdf."},{"key":"e_1_2_12_54_1","unstructured":"M.Sherer M.Vaccaro J.Whyte andJ. T.Giacino Consciousness Consortium. Koma Wachkoma und Minimal Bewusster Zusand nach schweren Sch\u00e4del\u2010Hirn\u2010Verletzungen. Informationsbrosch\u00fcre f\u00fcr Angeh\u00f6rige Published online2007 https:\/\/www.brainline.org\/article\/facts-about-vegetative-and-minimally-conscious-states-after-severe-brain-injury."},{"key":"e_1_2_12_55_1","unstructured":"Lumia Stiftung ed. Schwere erworbene Hirnsch\u00e4digungen und Wachkoma bei Kindern und Jugendlichen Published online2022 https:\/\/ratgeber.lumiastiftung.de\/hirnschaedigung-wachkoma\/wachkoma\/bewusstseinsstoerung\/#bewusstseinsstoerung."},{"key":"e_1_2_12_56_1","unstructured":"A. M.Sander\u201cPicking Up the Pieces After TBI: A Guide for Family Members Published online \u201d2011 https:\/\/www.biausa.org\/public-affairs\/media\/picking-up-the-pieces-after-tbi-a-guide-for-family-members."},{"key":"e_1_2_12_57_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2010.04.034"},{"key":"e_1_2_12_58_1","doi-asserted-by":"publisher","DOI":"10.1080\/10749357.2023.2259177"},{"key":"e_1_2_12_59_1","unstructured":"Readable Reviews | Readability Checker. Readable accessed August 22 2024 https:\/\/readable.com\/reviews\/."},{"key":"e_1_2_12_60_1","doi-asserted-by":"publisher","DOI":"10.1136\/jnis-2023-021205"},{"key":"e_1_2_12_61_1","doi-asserted-by":"publisher","DOI":"10.3389\/fonc.2015.00001"},{"key":"e_1_2_12_62_1","doi-asserted-by":"publisher","DOI":"10.1164\/ajrccm.165.4.200108-006oc"},{"key":"e_1_2_12_63_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0964-3397(98)80363-7"},{"key":"e_1_2_12_64_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00134-016-4592-0"},{"key":"e_1_2_12_65_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10072-020-04394-6"},{"key":"e_1_2_12_66_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.joms.2023.01.005"},{"key":"e_1_2_12_67_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12152-019-09425-4"}],"container-title":["Health Expectations"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hex.70097","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,3,10]],"date-time":"2025-03-10T03:19:50Z","timestamp":1741576790000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/hex.70097"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,12]]},"references-count":66,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2024,12]]}},"alternative-id":["10.1111\/hex.70097"],"URL":"https:\/\/doi.org\/10.1111\/hex.70097","archive":["Portico"],"relation":{},"ISSN":["1369-6513","1369-7625"],"issn-type":[{"type":"print","value":"1369-6513"},{"type":"electronic","value":"1369-7625"}],"subject":[],"published":{"date-parts":[[2024,12]]},"assertion":[{"value":"2023-10-26","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2024-10-27","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2024-12-13","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e70097"}}