Masefield, Sarah orcid.org/0000-0002-3286-0721, Cassidy, Nicola, Ross, Derek et al. (2 more authors) (2019) Communication difficulties reported by patients diagnosed with idiopathic pulmonary fibrosis and their carers:a European focus group study. ERJ open research. ISSN 2312-0541
Abstract
This paper explores commonalities in the experience and unmet needs of idiopathic pulmonary fibrosis (IPF) patients and carers in Europe throughout the care pathway, focusing specifically on the unmet communication needs of patients and carers. Four patient organisations/groups in Europe held focus groups (Italy (seven patients and four carers); Belgium (six patients); Ireland (23 patients and 10 carers); and England, UK (five patients and three carers)). A focus group schedule was provided and translated into the language of each focus group by the European Lung Foundation (ELF). Content analysis was conducted by the ELF and verified by the authors of the paper. Three main themes emerged: professional-patient, professional-professional and patient-patient communication. Within these themes, eight priority areas were highlighted by two or more of the focus groups. In addition, 17 suggested action points were identified. Patients and carers in Europe have unmet communication needs, which could be met by specialist physicians and specialist centres providing more effective information and signposting to support services, including support groups and patient organisations.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © ERS 2019. This is an author-produced version of the published paper. Uploaded in accordance with the publisher’s self-archiving policy. |
Dates: |
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Institution: | The University of York |
Academic Units: | The University of York > Faculty of Social Sciences (York) > Politics (York) |
Depositing User: | Pure (York) |
Date Deposited: | 13 Feb 2020 12:10 |
Last Modified: | 27 Nov 2024 00:37 |
Published Version: | https://doi.org/10.1183/23120541.00055-2019 |
Status: | Published |
Refereed: | Yes |
Identification Number: | 10.1183/23120541.00055-2019 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:157042 |
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Filename: 00055_2019.full.pdf
Description: Communication difficulties reported by patients diagnosed with idiopathic pulmonary fibrosis and their carers: a European focus group study
Licence: CC-BY-NC 2.5