Please use this identifier to cite or link to this item: http://ahro.austin.org.au/austinjspui/handle/1/23098
Title: The supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review.
Authors: Lee, Joanna Y T;Tikellis, Gabriella;Corte, Tamera J;Goh, Nicole S L;Keir, Gregory J;Spencer, Lissa;Sandford, Debra;Khor, Yet H;Glaspole, Ian;Price, John;Hey-Cunningham, Alison J;Maloney, Jamie;Teoh, Alan K Y;Watson, Alice L;Holland, Anne E
Affiliation: Allergy, Immunology and Respiratory Medicine, Monash University, Melbourne, Australia
Physiotherapy, La Trobe University, Melbourne, Australia
Royal Prince Alfred Hospital, Camperdown, Australia
Physiotherapy, La Trobe University, Melbourne, Australia
NHMRC Centre of Research Excellence in Pulmonary Fibrosis, Sydney, Australia
Respiratory Medicine, Royal Prince Alfred Hospital, Camperdown, Australia
Allergy, Immunology and Respiratory Medicine, Monash University, Melbourne, Australia
Princess Alexandra Hospital, Woolloongabba, Australia
Lung Foundation Australia, Brisbane, Australia
Institute for Respiratory Health, Nedlands, Australia
Austin Health, Heidelberg, Victoria, Australia
Institute for Breathing and Sleep, Austin Health, Heidelberg, Victoria, Australia
Alfred Health, Melbourne, Australia
University of Melbourne, Melbourne, Australia
Royal Adelaide Hospital, Adelaide, Australia
The University of Adelaide, Adelaide, Australia
The University of Sydney, Sydney, Australia
Issue Date: 30-Jun-2020
EDate: 2020-04
Citation: European respiratory review : an official journal of the European Respiratory Society 2020; 29(156): 190125
Abstract: 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. 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.
URI: http://ahro.austin.org.au/austinjspui/handle/1/23098
DOI: 10.1183/16000617.0125-2019
ORCID: 0000-0003-2567-6990
0000-0002-5118-2890
0000-0003-2065-4346
0000-0002-5434-9342
0000-0003-2061-845X
PubMed URL: 32350085
Type: Journal Article
Review
Appears in Collections:Journal articles

Files in This Item:
There are no files associated with this item.


Items in AHRO are protected by copyright, with all rights reserved, unless otherwise indicated.