A qualitative study of patient and carer experiences with home respiratory therapies: long-term oxygen therapy and home mechanical ventilation
| Autor(a) principal: | |
|---|---|
| Data de Publicação: | 2022 |
| Outros Autores: | , , , , , , , , , |
| Tipo de documento: | Artigo |
| Idioma: | eng |
| Título da fonte: | Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
| Texto Completo: | http://hdl.handle.net/10451/53317 |
Resumo: | © 2021 Sociedade Portuguesa de Pneumologia. Published by Elsevier España, S.L.U. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/) |
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A qualitative study of patient and carer experiences with home respiratory therapies: long-term oxygen therapy and home mechanical ventilationChronic care modelFocus groupsHome mechanical ventilationLong-term oxygen therapyPatient experienceQuality of care© 2021 Sociedade Portuguesa de Pneumologia. Published by Elsevier España, S.L.U. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/)Studies exploring the experience of patients receiving home respiratory therapies (HRT), such as long-term oxygen therapy (LTOT) and home mechanical ventilation (HMV), are still limited. This study focused on patients' and carers' experience with LTOT and HMV. An exploratory, cross-sectional qualitative study, using semi-structured focus groups, was carried out with 18 patients receiving HRT (median 71y, 78% male, 56% on both LTOT and HMV) and 6 carers (median age 67y, 67% female). Three focus groups were conducted in three regions of Portugal. Thematic analysis was performed by two independent researchers. Patients' and carers' experience was reflected in seven major topics, linked to specific time points and settings of the treatment: Initial symptoms/circumstances (n = 41), Prescription (n = 232), Implementation (n = 184), Carer involvement (n = 34), Quality of life impact (n = 301), Health care support/navigability (n = 173) and Suggestions (n = 14). Our findings demonstrate a general good perception of the HRT by patients and carers recognizing a significative quality of life impact improvement, while identifying specific points where improvements in healthcare are needed, particularly about navigability issues, articulation between the hospital, primary care and homecare teams, especially regardingprescriptionrenewal. This knowledge is crucial to promote a long-term HRT adherence and to optimize HRT delivery in line with patients' experience, needs, and values. Moreover, these key points can inform the development of a specific patient-reported experience measure (PREM) for patients on HRT, which is not currently available, and foster a more integrated respiratory care model.ElsevierRepositório da Universidade de LisboaCaneiras, CatiaJácome, CristinaMoreira, EmíliaOliveira, DanielaDias, Cláudia CamilaMendonça, LilianeMayoralas-Alises, SagrarioFonseca, João AlmeidaDiaz-Lobato, SalvadorEscarrabill, JoanWinck, João Carlos2022-06-07T14:59:13Z20222022-01-01T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10451/53317engPulmonology. Jul-Aug 2022;28(4):268-27510.1016/j.pulmoe.2021.05.0102531-0437info:eu-repo/semantics/openAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2023-11-08T16:59:01Zoai:repositorio.ul.pt:10451/53317Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-19T22:04:16.910942Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãofalse |
| dc.title.none.fl_str_mv |
A qualitative study of patient and carer experiences with home respiratory therapies: long-term oxygen therapy and home mechanical ventilation |
| title |
A qualitative study of patient and carer experiences with home respiratory therapies: long-term oxygen therapy and home mechanical ventilation |
| spellingShingle |
A qualitative study of patient and carer experiences with home respiratory therapies: long-term oxygen therapy and home mechanical ventilation Caneiras, Catia Chronic care model Focus groups Home mechanical ventilation Long-term oxygen therapy Patient experience Quality of care |
| title_short |
A qualitative study of patient and carer experiences with home respiratory therapies: long-term oxygen therapy and home mechanical ventilation |
| title_full |
A qualitative study of patient and carer experiences with home respiratory therapies: long-term oxygen therapy and home mechanical ventilation |
| title_fullStr |
A qualitative study of patient and carer experiences with home respiratory therapies: long-term oxygen therapy and home mechanical ventilation |
| title_full_unstemmed |
A qualitative study of patient and carer experiences with home respiratory therapies: long-term oxygen therapy and home mechanical ventilation |
| title_sort |
A qualitative study of patient and carer experiences with home respiratory therapies: long-term oxygen therapy and home mechanical ventilation |
| author |
Caneiras, Catia |
| author_facet |
Caneiras, Catia Jácome, Cristina Moreira, Emília Oliveira, Daniela Dias, Cláudia Camila Mendonça, Liliane Mayoralas-Alises, Sagrario Fonseca, João Almeida Diaz-Lobato, Salvador Escarrabill, Joan Winck, João Carlos |
| author_role |
author |
| author2 |
Jácome, Cristina Moreira, Emília Oliveira, Daniela Dias, Cláudia Camila Mendonça, Liliane Mayoralas-Alises, Sagrario Fonseca, João Almeida Diaz-Lobato, Salvador Escarrabill, Joan Winck, João Carlos |
| author2_role |
author author author author author author author author author author |
| dc.contributor.none.fl_str_mv |
Repositório da Universidade de Lisboa |
| dc.contributor.author.fl_str_mv |
Caneiras, Catia Jácome, Cristina Moreira, Emília Oliveira, Daniela Dias, Cláudia Camila Mendonça, Liliane Mayoralas-Alises, Sagrario Fonseca, João Almeida Diaz-Lobato, Salvador Escarrabill, Joan Winck, João Carlos |
| dc.subject.por.fl_str_mv |
Chronic care model Focus groups Home mechanical ventilation Long-term oxygen therapy Patient experience Quality of care |
| topic |
Chronic care model Focus groups Home mechanical ventilation Long-term oxygen therapy Patient experience Quality of care |
| description |
© 2021 Sociedade Portuguesa de Pneumologia. Published by Elsevier España, S.L.U. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/) |
| publishDate |
2022 |
| dc.date.none.fl_str_mv |
2022-06-07T14:59:13Z 2022 2022-01-01T00:00:00Z |
| dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
| dc.type.driver.fl_str_mv |
info:eu-repo/semantics/article |
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article |
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publishedVersion |
| dc.identifier.uri.fl_str_mv |
http://hdl.handle.net/10451/53317 |
| url |
http://hdl.handle.net/10451/53317 |
| dc.language.iso.fl_str_mv |
eng |
| language |
eng |
| dc.relation.none.fl_str_mv |
Pulmonology. Jul-Aug 2022;28(4):268-275 10.1016/j.pulmoe.2021.05.010 2531-0437 |
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info:eu-repo/semantics/openAccess |
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openAccess |
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application/pdf |
| dc.publisher.none.fl_str_mv |
Elsevier |
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Elsevier |
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reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação instacron:RCAAP |
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Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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RCAAP |
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RCAAP |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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