Please use this identifier to cite or link to this item: http://hdl.handle.net/1942/34102
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dc.contributor.authorHouben-Wilke, Sarah-
dc.contributor.authorDelbressine, Jeannet-
dc.contributor.authorVaes, Anouk-
dc.contributor.authorGoërtz, Yvonne-
dc.contributor.authorMeys, Roy-
dc.contributor.authorMachado, Felipe-
dc.contributor.authorVAN HERCK, Maarten-
dc.contributor.authorBURTIN, Chris-
dc.contributor.authorPosthuma, Rein-
dc.contributor.authorFranssen, Frits-
dc.contributor.authorvan Loon, Nicole-
dc.contributor.authorHajian, Bita-
dc.contributor.authorVijlbrief, Herman-
dc.contributor.authorSpies, Yvonne-
dc.contributor.authorvan 't Hul, Alex-
dc.contributor.authorJanssen, Daisy-
dc.contributor.authorSPRUIT, Martijn A.-
dc.date.accessioned2021-05-27T11:44:45Z-
dc.date.available2021-05-27T11:44:45Z-
dc.date.issued2021-
dc.date.submitted2021-05-19T14:37:17Z-
dc.identifier.citationJournal of Patient Experience, 8-
dc.identifier.urihttp://hdl.handle.net/1942/34102-
dc.description.abstractTo become a proactive and informed partner in postacute coronavirus disease 2019 (COVID-19) management, patients need to have the knowledge, skills, and confidence to self-manage COVID-19-related health challenges. Due to several restrictions and consequently social isolation, online platforms and forums where people can share information and experiences became more popular and influential. Therefore, this study aimed to identify perceived information needs and care needs of members of 2 Facebook groups for patients with COVID-19 and persistent complaints in the Netherlands and Belgium and patients with COVID-19 who registered at a website of the Lung Foundation Netherlands. Besides demographics and clinical characteristics , the degree of satisfaction with care during and after the infection as well as satisfaction with available information were assessed. Open text fields revealed specific information needs which were summarized. Patients with confirmed or suspected COVID-19 perceive various unmet needs varying from specific information needs (eg, information about permanent lung damage) to general needs (eg, being heard and understood). These data lead to several recommendations to improve care for patients with COVID-19 and justify further development of online platforms specifically addressing these unmet needs.-
dc.description.sponsorshipThe research team acknowledges the valuable input from the patient representatives to develop the survey, and the technical support by ASolutions’ Martijn Briejers and Oscar Wagemakers. The scientific work of YMJG is financially supported by Lung Foundation Netherlands grant 4.1.16.085, RM is financially supported by Lung Foundation Netherlands grant 5.1.18.232, and FVCM is financially supported by EU-grant ZonMw ERACoSysMed 90030355.-
dc.language.isoen-
dc.publisherSAGE Publications-
dc.rightsThis article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).-
dc.subject.otherCOVID-19-
dc.subject.othercorona-
dc.subject.otherunmet needs-
dc.subject.otherinformation needs-
dc.subject.otherlong-term symptoms-
dc.subject.othersocial support-
dc.titleUnderstanding and Being Understood: Information and Care Needs of 2113 Patients With Confirmed or Suspected COVID-19-
dc.typeJournal Contribution-
dc.identifier.volume8-
local.bibliographicCitation.jcatA1-
local.publisher.place2455 TELLER RD, THOUSAND OAKS, CA 91320 USA-
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local.type.refereedRefereed-
local.type.specifiedArticle-
dc.identifier.doi10.1177/2374373521997222-
dc.identifier.pmid34179387-
dc.identifier.isiWOS:000649149900001-
dc.identifier.eissn2374-3743-
local.provider.typePdf-
local.uhasselt.uhpubyes-
local.dataset.citationMEC2020/041 and METC2020-1978-
local.uhasselt.internationalyes-
item.accessRightsOpen Access-
item.validationvabb 2023-
item.contributorHouben-Wilke, Sarah-
item.contributorDelbressine, Jeannet-
item.contributorVaes, Anouk-
item.contributorGoërtz, Yvonne-
item.contributorMeys, Roy-
item.contributorMachado, Felipe-
item.contributorVAN HERCK, Maarten-
item.contributorBURTIN, Chris-
item.contributorPosthuma, Rein-
item.contributorFranssen, Frits-
item.contributorvan Loon, Nicole-
item.contributorHajian, Bita-
item.contributorVijlbrief, Herman-
item.contributorSpies, Yvonne-
item.contributorvan 't Hul, Alex-
item.contributorJanssen, Daisy-
item.contributorSPRUIT, Martijn A.-
item.fulltextWith Fulltext-
item.fullcitationHouben-Wilke, Sarah; Delbressine, Jeannet; Vaes, Anouk; Goërtz, Yvonne; Meys, Roy; Machado, Felipe; VAN HERCK, Maarten; BURTIN, Chris; Posthuma, Rein; Franssen, Frits; van Loon, Nicole; Hajian, Bita; Vijlbrief, Herman; Spies, Yvonne; van 't Hul, Alex; Janssen, Daisy & SPRUIT, Martijn A. (2021) Understanding and Being Understood: Information and Care Needs of 2113 Patients With Confirmed or Suspected COVID-19. In: Journal of Patient Experience, 8.-
crisitem.journal.issn2374-3743-
crisitem.journal.eissn2374-3735-
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