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dc.contributor.authorLee, JYT
dc.contributor.authorTikellis, G
dc.contributor.authorCorte, TJ
dc.contributor.authorGoh, NS
dc.contributor.authorKeir, GJ
dc.contributor.authorSpencer, L
dc.contributor.authorSandford, D
dc.contributor.authorKhor, YH
dc.contributor.authorGlaspole, I
dc.contributor.authorPrice, J
dc.contributor.authorHey-Cunningham, AJ
dc.contributor.authorMaloney, J
dc.contributor.authorTeoh, AKY
dc.contributor.authorWatson, AL
dc.contributor.authorHolland, AE
dc.date.accessioned2020-11-26T23:11:46Z
dc.date.available2020-11-26T23:11:46Z
dc.date.issued2020-06-30
dc.identifierpii: 29/156/190125
dc.identifier.citationLee, J. Y. T., Tikellis, G., Corte, T. J., Goh, N. S., Keir, G. J., Spencer, L., Sandford, D., Khor, Y. H., Glaspole, I., Price, J., Hey-Cunningham, A. J., Maloney, J., Teoh, A. K. Y., Watson, A. L. & Holland, A. E. (2020). The supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review. EUROPEAN RESPIRATORY REVIEW, 29 (156), https://doi.org/10.1183/16000617.0125-2019.
dc.identifier.issn0905-9180
dc.identifier.urihttp://hdl.handle.net/11343/252143
dc.description.abstractBACKGROUND: People with pulmonary fibrosis often experience a protracted time to diagnosis, high symptom burden and limited disease information. This review aimed to identify the supportive care needs reported by people with pulmonary fibrosis and their caregivers. METHODS: A systematic review was conducted according to PRISMA guidelines. Studies that investigated the supportive care needs of people with pulmonary fibrosis or their caregivers were included. Supportive care needs were extracted and mapped to eight pre-specified domains using a framework synthesis method. RESULTS: A total of 35 studies were included. The most frequently reported needs were in the domain of information/education, including information on supplemental oxygen, disease progression and prognosis, pharmacological treatments and end-of-life planning. Psychosocial/emotional needs were also frequently reported, including management of anxiety, anger, sadness and fear. An additional domain of "access to care" was identified that had not been specified a priori; this included access to peer support, psychological support, specialist centres and support for families of people with pulmonary fibrosis. CONCLUSION: People with pulmonary fibrosis report many unmet needs for supportive care, particularly related to insufficient information and lack of psychosocial support. These data can inform the development of comprehensive care models for people with pulmonary fibrosis and their loved ones.
dc.languageEnglish
dc.publisherEUROPEAN RESPIRATORY SOC JOURNALS LTD
dc.rights.urihttps://creativecommons.org/licenses/by-nc/4.0
dc.titleThe supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review
dc.typeJournal Article
dc.identifier.doi10.1183/16000617.0125-2019
melbourne.affiliation.departmentPhysiotherapy
melbourne.affiliation.departmentMedicine (Austin & Northern Health)
melbourne.affiliation.facultyMedicine, Dentistry & Health Sciences
melbourne.source.titleEuropean Respiratory Review
melbourne.source.volume29
melbourne.source.issue156
dc.rights.licensecc-by-nc
melbourne.elementsid1460711
melbourne.contributor.authorKhor, Yet Hong
melbourne.contributor.authorGoh, Nicole Soo Leng
melbourne.contributor.authorHOLLAND, ANNE ELIZABETH
melbourne.contributor.authorHOLLAND, ANNE
dc.identifier.eissn1600-0617
melbourne.accessrightsOpen Access


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