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Patients’ experiences of coping with Idiopathic Pulmonary Fibrosis and their recommendations for its clinical management

Sameera Senanayake, Kim Harrison, Michael Lewis, Melitta McNarry Orcid Logo, Joanne Hudson Orcid Logo

PLOS ONE, Volume: 13, Issue: 5, Start page: e0197660

Swansea University Authors: Michael Lewis, Melitta McNarry Orcid Logo, Joanne Hudson Orcid Logo

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DOI (Published version): 10.1371/journal.pone.0197660

Abstract

BackgroundIdiopathic Pulmonary Fibrosis (IPF) is a chronic, progressive and life-limiting condition. From a healthcare perspective it is vital to establish effective methods of improving the quality of remaining life in these patients. This requires a detailed understanding of the multiple impacts o...

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Published in: PLOS ONE
ISSN: 1932-6203
Published: Public Library of Science (PLoS) 2018
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URI: https://cronfa.swan.ac.uk/Record/cronfa40046
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From a healthcare perspective it is vital to establish effective methods of improving the quality of remaining life in these patients. This requires a detailed understanding of the multiple impacts of an IPF diagnosis on the individual.MethodsWe sought to understand how patients coped with their initial diagnosis, how they live with the disease day-to-day, and their experiences and opinions of the professional support they receive. A patient-centred approach was used to explore the social, psychological and physical impacts of IPF. Semi-structured interviews were conducted by an experienced academic. Interview questions were written by the researchers but guided by informal conversations with patients and clinicians. An inductive thematic approach was used to analyse the data, allowing us to identify common themes in the patients&#x2019; experiences.ResultsOf fifty invited participants, ten took part in the study (aged 53&#x2013;81 years; 9 male). Inductive analysis of interviews identified seven second-order themes and eleven first-order themes, represented by two General Dimensions: &#x2018;Patient experience with the condition&#x2019; and &#x2018;Patient-led recommendations for practice&#x2019;. The key message on &#x2018;coping&#x2019; in these patients was that acceptance of their condition led to a sense of optimism. Participants reported using appraisal-focused coping strategies to change their perspectives (thinking positively) and emotion-focused strategies to overcome depression (the main opportunity for emotional expression being an IPF support group). The support group also facilitated problem-focused coping: individuals exchanged knowledge and experience and gave one another tips on how to live with their condition.ConclusionsHealth professionals should provide patients with information that focuses on living with IPF, encouraging them to make lifestyle changes and adaptations to improve quality of life. Family members should receive education about IPF so that they can support such changes. Patients should be encouraged to join a support group and to participate in physical activity (again preferably group-based). This study offers novel findings that will help inform much-needed changes in the practice of supporting IPF patients to cope with their diagnosis and disease progression.</abstract><type>Journal Article</type><journal>PLOS ONE</journal><volume>13</volume><journalNumber>5</journalNumber><paginationStart>e0197660</paginationStart><publisher>Public Library of Science (PLoS)</publisher><issnElectronic>1932-6203</issnElectronic><keywords/><publishedDay>31</publishedDay><publishedMonth>12</publishedMonth><publishedYear>2018</publishedYear><publishedDate>2018-12-31</publishedDate><doi>10.1371/journal.pone.0197660</doi><url/><notes>Data from this study have been uploaded to the Zenodo repository and are available at the following address: doi.org/10.5281/zenodo.1218276</notes><college>COLLEGE NANME</college><department>Science and Engineering - Faculty</department><CollegeCode>COLLEGE CODE</CollegeCode><DepartmentCode>FGSEN</DepartmentCode><institution>Swansea University</institution><apcterm/><lastEdited>2020-10-22T18:12:15.6701350</lastEdited><Created>2018-05-09T11:06:44.2520922</Created><path><level id="1">Faculty of Science and Engineering</level><level id="2">School of Engineering and Applied Sciences - Uncategorised</level></path><authors><author><firstname>Sameera</firstname><surname>Senanayake</surname><order>1</order></author><author><firstname>Kim</firstname><surname>Harrison</surname><order>2</order></author><author><firstname>Michael</firstname><surname>Lewis</surname><order>3</order></author><author><firstname>Melitta</firstname><surname>McNarry</surname><orcid>0000-0003-0813-7477</orcid><order>4</order></author><author><firstname>Joanne</firstname><surname>Hudson</surname><orcid>0000-0003-4732-8356</orcid><order>5</order></author></authors><documents><document><filename>0040046-06082018103822.pdf</filename><originalFilename>Senanayake-2018-Patients-experiences-of-coping-with.pdf</originalFilename><uploaded>2018-08-06T10:38:22.9670000</uploaded><type>Output</type><contentLength>2373201</contentLength><contentType>application/pdf</contentType><version>Version of Record</version><cronfaStatus>true</cronfaStatus><embargoDate>2018-08-06T00:00:00.0000000</embargoDate><copyrightCorrect>true</copyrightCorrect><language>eng</language></document></documents><OutputDurs/></rfc1807>
spelling 2020-10-22T18:12:15.6701350 v2 40046 2018-05-09 Patients’ experiences of coping with Idiopathic Pulmonary Fibrosis and their recommendations for its clinical management b59c8f5c056bac7e6995385f22ad1639 Michael Lewis Michael Lewis true false 062f5697ff59f004bc8c713955988398 0000-0003-0813-7477 Melitta McNarry Melitta McNarry true false 304341cf2cd1bdb99d7d6ccf0f030d99 0000-0003-4732-8356 Joanne Hudson Joanne Hudson true false 2018-05-09 FGSEN BackgroundIdiopathic Pulmonary Fibrosis (IPF) is a chronic, progressive and life-limiting condition. From a healthcare perspective it is vital to establish effective methods of improving the quality of remaining life in these patients. This requires a detailed understanding of the multiple impacts of an IPF diagnosis on the individual.MethodsWe sought to understand how patients coped with their initial diagnosis, how they live with the disease day-to-day, and their experiences and opinions of the professional support they receive. A patient-centred approach was used to explore the social, psychological and physical impacts of IPF. Semi-structured interviews were conducted by an experienced academic. Interview questions were written by the researchers but guided by informal conversations with patients and clinicians. An inductive thematic approach was used to analyse the data, allowing us to identify common themes in the patients’ experiences.ResultsOf fifty invited participants, ten took part in the study (aged 53–81 years; 9 male). Inductive analysis of interviews identified seven second-order themes and eleven first-order themes, represented by two General Dimensions: ‘Patient experience with the condition’ and ‘Patient-led recommendations for practice’. The key message on ‘coping’ in these patients was that acceptance of their condition led to a sense of optimism. Participants reported using appraisal-focused coping strategies to change their perspectives (thinking positively) and emotion-focused strategies to overcome depression (the main opportunity for emotional expression being an IPF support group). The support group also facilitated problem-focused coping: individuals exchanged knowledge and experience and gave one another tips on how to live with their condition.ConclusionsHealth professionals should provide patients with information that focuses on living with IPF, encouraging them to make lifestyle changes and adaptations to improve quality of life. Family members should receive education about IPF so that they can support such changes. Patients should be encouraged to join a support group and to participate in physical activity (again preferably group-based). This study offers novel findings that will help inform much-needed changes in the practice of supporting IPF patients to cope with their diagnosis and disease progression. Journal Article PLOS ONE 13 5 e0197660 Public Library of Science (PLoS) 1932-6203 31 12 2018 2018-12-31 10.1371/journal.pone.0197660 Data from this study have been uploaded to the Zenodo repository and are available at the following address: doi.org/10.5281/zenodo.1218276 COLLEGE NANME Science and Engineering - Faculty COLLEGE CODE FGSEN Swansea University 2020-10-22T18:12:15.6701350 2018-05-09T11:06:44.2520922 Faculty of Science and Engineering School of Engineering and Applied Sciences - Uncategorised Sameera Senanayake 1 Kim Harrison 2 Michael Lewis 3 Melitta McNarry 0000-0003-0813-7477 4 Joanne Hudson 0000-0003-4732-8356 5 0040046-06082018103822.pdf Senanayake-2018-Patients-experiences-of-coping-with.pdf 2018-08-06T10:38:22.9670000 Output 2373201 application/pdf Version of Record true 2018-08-06T00:00:00.0000000 true eng
title Patients’ experiences of coping with Idiopathic Pulmonary Fibrosis and their recommendations for its clinical management
spellingShingle Patients’ experiences of coping with Idiopathic Pulmonary Fibrosis and their recommendations for its clinical management
Michael Lewis
Melitta McNarry
Joanne Hudson
title_short Patients’ experiences of coping with Idiopathic Pulmonary Fibrosis and their recommendations for its clinical management
title_full Patients’ experiences of coping with Idiopathic Pulmonary Fibrosis and their recommendations for its clinical management
title_fullStr Patients’ experiences of coping with Idiopathic Pulmonary Fibrosis and their recommendations for its clinical management
title_full_unstemmed Patients’ experiences of coping with Idiopathic Pulmonary Fibrosis and their recommendations for its clinical management
title_sort Patients’ experiences of coping with Idiopathic Pulmonary Fibrosis and their recommendations for its clinical management
author_id_str_mv b59c8f5c056bac7e6995385f22ad1639
062f5697ff59f004bc8c713955988398
304341cf2cd1bdb99d7d6ccf0f030d99
author_id_fullname_str_mv b59c8f5c056bac7e6995385f22ad1639_***_Michael Lewis
062f5697ff59f004bc8c713955988398_***_Melitta McNarry
304341cf2cd1bdb99d7d6ccf0f030d99_***_Joanne Hudson
author Michael Lewis
Melitta McNarry
Joanne Hudson
author2 Sameera Senanayake
Kim Harrison
Michael Lewis
Melitta McNarry
Joanne Hudson
format Journal article
container_title PLOS ONE
container_volume 13
container_issue 5
container_start_page e0197660
publishDate 2018
institution Swansea University
issn 1932-6203
doi_str_mv 10.1371/journal.pone.0197660
publisher Public Library of Science (PLoS)
college_str Faculty of Science and Engineering
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hierarchy_top_id facultyofscienceandengineering
hierarchy_top_title Faculty of Science and Engineering
hierarchy_parent_id facultyofscienceandengineering
hierarchy_parent_title Faculty of Science and Engineering
department_str School of Engineering and Applied Sciences - Uncategorised{{{_:::_}}}Faculty of Science and Engineering{{{_:::_}}}School of Engineering and Applied Sciences - Uncategorised
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description BackgroundIdiopathic Pulmonary Fibrosis (IPF) is a chronic, progressive and life-limiting condition. From a healthcare perspective it is vital to establish effective methods of improving the quality of remaining life in these patients. This requires a detailed understanding of the multiple impacts of an IPF diagnosis on the individual.MethodsWe sought to understand how patients coped with their initial diagnosis, how they live with the disease day-to-day, and their experiences and opinions of the professional support they receive. A patient-centred approach was used to explore the social, psychological and physical impacts of IPF. Semi-structured interviews were conducted by an experienced academic. Interview questions were written by the researchers but guided by informal conversations with patients and clinicians. An inductive thematic approach was used to analyse the data, allowing us to identify common themes in the patients’ experiences.ResultsOf fifty invited participants, ten took part in the study (aged 53–81 years; 9 male). Inductive analysis of interviews identified seven second-order themes and eleven first-order themes, represented by two General Dimensions: ‘Patient experience with the condition’ and ‘Patient-led recommendations for practice’. The key message on ‘coping’ in these patients was that acceptance of their condition led to a sense of optimism. Participants reported using appraisal-focused coping strategies to change their perspectives (thinking positively) and emotion-focused strategies to overcome depression (the main opportunity for emotional expression being an IPF support group). The support group also facilitated problem-focused coping: individuals exchanged knowledge and experience and gave one another tips on how to live with their condition.ConclusionsHealth professionals should provide patients with information that focuses on living with IPF, encouraging them to make lifestyle changes and adaptations to improve quality of life. Family members should receive education about IPF so that they can support such changes. Patients should be encouraged to join a support group and to participate in physical activity (again preferably group-based). This study offers novel findings that will help inform much-needed changes in the practice of supporting IPF patients to cope with their diagnosis and disease progression.
published_date 2018-12-31T03:50:56Z
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