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dc.contributor.authorLyu, Yang
dc.contributor.authorJia, Yanrui
dc.contributor.authorGao, Fengli
dc.contributor.authorHuang, Ya-Ling
dc.contributor.authorLin, Frances
dc.date.accessioned2021-03-09T02:56:21Z
dc.date.available2021-03-09T02:56:21Z
dc.date.issued2021
dc.identifier.issn2352-0132
dc.identifier.doi10.1016/j.ijnss.2021.02.004
dc.identifier.urihttp://hdl.handle.net/10072/402983
dc.description.abstractObjective: This study aimed to explore the lived experiences of the disease journey and patients’ care needs with idiopathic pulmonary fibrosis (IPF). Methods: Face-to-face semi-structured interviews were conducted with a purposive sampling of IPF patients admitted to the department of respiratory medicine in a tertiary hospital in Beijing. Interview data were analyzed using the thematic analysis method. In the end, 16 patients were interviewed. Results: Four themes emerged from the qualitative data included the long and confusing journey to reach a diagnosis, living with the disease, understanding the disease and treatment and desire for continuity of care. A series of subthemes were also identified, including uncertainty of diagnosis, delaying the process, living with physical symptoms, living with emotional distress, loss of independence, uncertainty with the prognosis, questioning the cause of the disease, concerning the side effects of treatments, lacking continuity of care, and wanting a better quality of healthcare in community hospitals. Conclusions: Based on the findings, there is an urgent need to improve the care delivery to this vulnerable population in China. To meet their health needs, it is of paramount importance to develop effective education programs for health professionals and IPF patients and improve care models of healthcare systems, especially in remote areas, to enhance care continuity in the communities.
dc.description.peerreviewedYes
dc.languageen
dc.publisherElsevier BV
dc.relation.ispartofjournalInternational Journal of Nursing Sciences
dc.subject.fieldofresearchCardiovascular medicine and haematology
dc.subject.fieldofresearchNursing
dc.subject.fieldofresearchcode3201
dc.subject.fieldofresearchcode4205
dc.titleLived experiences of the disease journey among patients with idiopathic pulmonary fibrosis
dc.typeJournal article
dc.type.descriptionC1 - Articles
dcterms.bibliographicCitationLyu, Y; Jia, Y; Gao, F; Huang, Y-L; Lin, F, Lived experiences of the disease journey among patients with idiopathic pulmonary fibrosis, International Journal of Nursing Sciences, 2021
dcterms.licensehttps://creativecommons.org/licenses/by-nc-nd/4.0/
dc.date.updated2021-03-08T22:27:07Z
dc.description.versionAccepted Manuscript (AM)
gro.description.notepublicThis publication has been entered into Griffith Research Online as an Advanced Online Version.
gro.rights.copyright© 2021 The Authors. Published by Elsevier B.V. on behalf of the Chinese Nursing Association. Licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International Licence, which permits unrestricted, non-commercial use, distribution and reproduction in any medium, providing that the work is properly cited.
gro.hasfulltextFull Text
gro.griffith.authorLin, Frances F.
gro.griffith.authorHuang, Ya-Ling


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