Please use this identifier to cite or link to this item: https://ahro.austin.org.au/austinjspui/handle/1/23098
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dc.contributor.authorLee, Joanna Y T-
dc.contributor.authorTikellis, Gabriella-
dc.contributor.authorCorte, Tamera J-
dc.contributor.authorGoh, Nicole S L-
dc.contributor.authorKeir, Gregory J-
dc.contributor.authorSpencer, Lissa-
dc.contributor.authorSandford, Debra-
dc.contributor.authorKhor, Yet H-
dc.contributor.authorGlaspole, Ian-
dc.contributor.authorPrice, John-
dc.contributor.authorHey-Cunningham, Alison J-
dc.contributor.authorMaloney, Jamie-
dc.contributor.authorTeoh, Alan K Y-
dc.contributor.authorWatson, Alice L-
dc.contributor.authorHolland, Anne E-
dc.date2020-04-
dc.date.accessioned2020-05-05T23:59:24Z-
dc.date.available2020-05-05T23:59:24Z-
dc.date.issued2020-06-30-
dc.identifier.citationEuropean Respiratory Review 2020; 29(156): 190125en_US
dc.identifier.urihttps://ahro.austin.org.au/austinjspui/handle/1/23098-
dc.description.abstractPeople 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. 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. 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. 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.en_US
dc.language.isoeng-
dc.titleThe supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review.en_US
dc.typeJournal Articleen_US
dc.identifier.journaltitleEuropean Respiratory Reviewen_US
dc.identifier.affiliationPhysiotherapy, La Trobe University, Melbourne, Australiaen_US
dc.identifier.affiliationRoyal Prince Alfred Hospital, Camperdown, Australiaen_US
dc.identifier.affiliationAllergy, Immunology and Respiratory Medicine, Monash University, Melbourne, Australiaen_US
dc.identifier.affiliationPhysiotherapy, La Trobe University, Melbourne, Australiaen_US
dc.identifier.affiliationNHMRC Centre of Research Excellence in Pulmonary Fibrosis, Sydney, Australiaen_US
dc.identifier.affiliationRespiratory Medicine, Royal Prince Alfred Hospital, Camperdown, Australiaen_US
dc.identifier.affiliationAllergy, Immunology and Respiratory Medicine, Monash University, Melbourne, Australiaen_US
dc.identifier.affiliationPrincess Alexandra Hospital, Woolloongabba, Australiaen_US
dc.identifier.affiliationLung Foundation Australia, Brisbane, Australiaen_US
dc.identifier.affiliationInstitute for Respiratory Health, Nedlands, Australiaen_US
dc.identifier.affiliationAustin Healthen_US
dc.identifier.affiliationInstitute for Breathing and Sleepen_US
dc.identifier.affiliationAlfred Health, Melbourne, Australiaen_US
dc.identifier.affiliationUniversity of Melbourne, Melbourne, Australiaen_US
dc.identifier.affiliationRoyal Adelaide Hospital, Adelaide, Australiaen_US
dc.identifier.affiliationThe University of Adelaide, Adelaide, Australiaen_US
dc.identifier.affiliationThe University of Sydney, Sydney, Australiaen_US
dc.identifier.doi10.1183/16000617.0125-2019en_US
dc.type.contentTexten_US
dc.identifier.orcid0000-0003-2567-6990en_US
dc.identifier.orcid0000-0002-5434-9342en_US
dc.identifier.orcid0000-0002-5118-2890en_US
dc.identifier.orcid0000-0003-2065-4346en_US
dc.identifier.orcid0000-0003-2061-845Xen_US
dc.identifier.pubmedid32350085-
dc.type.austinJournal Article-
dc.type.austinReview-
local.name.researcherGoh, Nicole S L
item.languageiso639-1en-
item.fulltextNo Fulltext-
item.grantfulltextnone-
item.openairecristypehttp://purl.org/coar/resource_type/c_18cf-
item.cerifentitytypePublications-
item.openairetypeJournal Article-
crisitem.author.deptRespiratory and Sleep Medicine-
crisitem.author.deptInstitute for Breathing and Sleep-
crisitem.author.deptRespiratory and Sleep Medicine-
crisitem.author.deptInstitute for Breathing and Sleep-
crisitem.author.deptMedicine (University of Melbourne)-
crisitem.author.deptInstitute for Breathing and Sleep-
crisitem.author.deptPhysiotherapy-
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