‘I hated being ghosted’ – The relevance of social participation for living well with post‐stroke aphasia: Qualitative interviews with working aged adults
Background In the context of increasing incidence of stroke in working aged adults, there is a specific need to explore the views of working aged adults with post‐stroke aphasia, whose communication difficulties may result in restricted social participation, loss of employment and changed relationsh...
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| Veröffentlicht in: | Health expectations : an international journal of public participation in health care and health policy 2021-08, Vol.24 (4), p.1504-1515 |
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| container_title | Health expectations : an international journal of public participation in health care and health policy |
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| creator | Manning, Molly MacFarlane, Anne Hickey, Anne Galvin, Rose Franklin, Sue |
| description | Background
In the context of increasing incidence of stroke in working aged adults, there is a specific need to explore the views of working aged adults with post‐stroke aphasia, whose communication difficulties may result in restricted social participation, loss of employment and changed relationship and parenting roles. This study aimed to explore the perspectives of working aged adults with post‐stroke aphasia in relation to social participation and living well with aphasia (LWA).
Design and participants
We conducted qualitative interviews with 14 people with post‐stroke aphasia (PWA). Data were analysed following principles of reflexive, thematic analysis.
Patient or Public Contribution: A Public and Patient Involvement aphasia advisory group inputted into the study design and interpretation of data.
Results
Social participation spanned 5 themes: Relationships and roles; Social support; Peer network, Aphasia awareness; and Employment and training. Meaningful, interesting social participation for LWA is individually defined. Working aged PWA may require flexible support with parenting, accessing a diverse social network and finding opportunities for meaningful social connection, training and employment.
Conclusions
The findings extend knowledge of social participation in the context of LWA for working aged adults by elucidating the individually defined nature of meaningful participation and how PWA may need flexible support with parenting, accessing a diverse social network and training and employment. For aphasia research, policy and services to be relevant, it is crucial that working aged PWA are meaningfully involved in setting the aphasia agenda. |
| doi_str_mv | 10.1111/hex.13291 |
| format | Article |
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In the context of increasing incidence of stroke in working aged adults, there is a specific need to explore the views of working aged adults with post‐stroke aphasia, whose communication difficulties may result in restricted social participation, loss of employment and changed relationship and parenting roles. This study aimed to explore the perspectives of working aged adults with post‐stroke aphasia in relation to social participation and living well with aphasia (LWA).
Design and participants
We conducted qualitative interviews with 14 people with post‐stroke aphasia (PWA). Data were analysed following principles of reflexive, thematic analysis.
Patient or Public Contribution: A Public and Patient Involvement aphasia advisory group inputted into the study design and interpretation of data.
Results
Social participation spanned 5 themes: Relationships and roles; Social support; Peer network, Aphasia awareness; and Employment and training. Meaningful, interesting social participation for LWA is individually defined. Working aged PWA may require flexible support with parenting, accessing a diverse social network and finding opportunities for meaningful social connection, training and employment.
Conclusions
The findings extend knowledge of social participation in the context of LWA for working aged adults by elucidating the individually defined nature of meaningful participation and how PWA may need flexible support with parenting, accessing a diverse social network and training and employment. For aphasia research, policy and services to be relevant, it is crucial that working aged PWA are meaningfully involved in setting the aphasia agenda.</description><identifier>ISSN: 1369-6513</identifier><identifier>EISSN: 1369-7625</identifier><identifier>DOI: 10.1111/hex.13291</identifier><identifier>PMID: 34132006</identifier><language>eng</language><publisher>HOBOKEN: Wiley</publisher><subject><![CDATA[Adults ; Advisory groups ; Age ; Aphasia ; Communication ; Consent ; Context ; Employment ; Health Care Sciences & Services ; Health Policy & Services ; Interviews ; Life Sciences & Biomedicine ; Original ; Parents & parenting ; Participation ; patient involvement ; Patient participation ; Patient satisfaction ; Public, Environmental & Occupational Health ; Qualitative analysis ; Qualitative research ; rehabilitation ; Science & Technology ; Social education ; Social interactions ; Social networks ; Social organization ; Social participation ; Social support ; Stroke ; Training ; Traumatic brain injury]]></subject><ispartof>Health expectations : an international journal of public participation in health care and health policy, 2021-08, Vol.24 (4), p.1504-1515</ispartof><rights>2021 The Authors. published by John Wiley & Sons Ltd.</rights><rights>2021. This work is published under http://creativecommons.org/licenses/by/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>true</woscitedreferencessubscribed><woscitedreferencescount>18</woscitedreferencescount><woscitedreferencesoriginalsourcerecordid>wos000661666800001</woscitedreferencesoriginalsourcerecordid><citedby>FETCH-LOGICAL-c4861-39698c4d40ed484dacfd54ab496a6d8aa00391615aaab62299990467a7ecd7cf3</citedby><cites>FETCH-LOGICAL-c4861-39698c4d40ed484dacfd54ab496a6d8aa00391615aaab62299990467a7ecd7cf3</cites><orcidid>0000-0002-2798-2695</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC8369109/pdf/$$EPDF$$P50$$Gpubmedcentral$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC8369109/$$EHTML$$P50$$Gpubmedcentral$$Hfree_for_read</linktohtml><link.rule.ids>230,315,728,781,785,865,886,1418,2103,2115,11567,12851,27929,27930,31004,39262,39263,45579,45580,46057,46481,53796,53798</link.rule.ids></links><search><creatorcontrib>Manning, Molly</creatorcontrib><creatorcontrib>MacFarlane, Anne</creatorcontrib><creatorcontrib>Hickey, Anne</creatorcontrib><creatorcontrib>Galvin, Rose</creatorcontrib><creatorcontrib>Franklin, Sue</creatorcontrib><title>‘I hated being ghosted’ – The relevance of social participation for living well with post‐stroke aphasia: Qualitative interviews with working aged adults</title><title>Health expectations : an international journal of public participation in health care and health policy</title><addtitle>HEALTH EXPECT</addtitle><description>Background
In the context of increasing incidence of stroke in working aged adults, there is a specific need to explore the views of working aged adults with post‐stroke aphasia, whose communication difficulties may result in restricted social participation, loss of employment and changed relationship and parenting roles. This study aimed to explore the perspectives of working aged adults with post‐stroke aphasia in relation to social participation and living well with aphasia (LWA).
Design and participants
We conducted qualitative interviews with 14 people with post‐stroke aphasia (PWA). Data were analysed following principles of reflexive, thematic analysis.
Patient or Public Contribution: A Public and Patient Involvement aphasia advisory group inputted into the study design and interpretation of data.
Results
Social participation spanned 5 themes: Relationships and roles; Social support; Peer network, Aphasia awareness; and Employment and training. Meaningful, interesting social participation for LWA is individually defined. Working aged PWA may require flexible support with parenting, accessing a diverse social network and finding opportunities for meaningful social connection, training and employment.
Conclusions
The findings extend knowledge of social participation in the context of LWA for working aged adults by elucidating the individually defined nature of meaningful participation and how PWA may need flexible support with parenting, accessing a diverse social network and training and employment. For aphasia research, policy and services to be relevant, it is crucial that working aged PWA are meaningfully involved in setting the aphasia agenda.</description><subject>Adults</subject><subject>Advisory groups</subject><subject>Age</subject><subject>Aphasia</subject><subject>Communication</subject><subject>Consent</subject><subject>Context</subject><subject>Employment</subject><subject>Health Care Sciences & Services</subject><subject>Health Policy & Services</subject><subject>Interviews</subject><subject>Life Sciences & Biomedicine</subject><subject>Original</subject><subject>Parents & parenting</subject><subject>Participation</subject><subject>patient involvement</subject><subject>Patient participation</subject><subject>Patient satisfaction</subject><subject>Public, Environmental & Occupational Health</subject><subject>Qualitative analysis</subject><subject>Qualitative research</subject><subject>rehabilitation</subject><subject>Science & Technology</subject><subject>Social 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Molly</creator><creator>MacFarlane, Anne</creator><creator>Hickey, Anne</creator><creator>Galvin, Rose</creator><creator>Franklin, Sue</creator><general>Wiley</general><general>John Wiley & Sons, Inc</general><general>John Wiley and Sons 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Sue</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>‘I hated being ghosted’ – The relevance of social participation for living well with post‐stroke aphasia: Qualitative interviews with working aged adults</atitle><jtitle>Health expectations : an international journal of public participation in health care and health policy</jtitle><stitle>HEALTH EXPECT</stitle><date>2021-08</date><risdate>2021</risdate><volume>24</volume><issue>4</issue><spage>1504</spage><epage>1515</epage><pages>1504-1515</pages><issn>1369-6513</issn><eissn>1369-7625</eissn><abstract>Background
In the context of increasing incidence of stroke in working aged adults, there is a specific need to explore the views of working aged adults with post‐stroke aphasia, whose communication difficulties may result in restricted social participation, loss of employment and changed relationship and parenting roles. This study aimed to explore the perspectives of working aged adults with post‐stroke aphasia in relation to social participation and living well with aphasia (LWA).
Design and participants
We conducted qualitative interviews with 14 people with post‐stroke aphasia (PWA). Data were analysed following principles of reflexive, thematic analysis.
Patient or Public Contribution: A Public and Patient Involvement aphasia advisory group inputted into the study design and interpretation of data.
Results
Social participation spanned 5 themes: Relationships and roles; Social support; Peer network, Aphasia awareness; and Employment and training. Meaningful, interesting social participation for LWA is individually defined. Working aged PWA may require flexible support with parenting, accessing a diverse social network and finding opportunities for meaningful social connection, training and employment.
Conclusions
The findings extend knowledge of social participation in the context of LWA for working aged adults by elucidating the individually defined nature of meaningful participation and how PWA may need flexible support with parenting, accessing a diverse social network and training and employment. For aphasia research, policy and services to be relevant, it is crucial that working aged PWA are meaningfully involved in setting the aphasia agenda.</abstract><cop>HOBOKEN</cop><pub>Wiley</pub><pmid>34132006</pmid><doi>10.1111/hex.13291</doi><tpages>12</tpages><orcidid>https://orcid.org/0000-0002-2798-2695</orcidid><oa>free_for_read</oa></addata></record> |
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| ispartof | Health expectations : an international journal of public participation in health care and health policy, 2021-08, Vol.24 (4), p.1504-1515 |
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| language | eng |
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| source | DOAJ Directory of Open Access Journals; Access via Wiley Online Library; Applied Social Sciences Index & Abstracts (ASSIA); Web of Science - Science Citation Index Expanded - 2021<img src="https://exlibris-pub.s3.amazonaws.com/fromwos-v2.jpg" />; EZB-FREE-00999 freely available EZB journals; Wiley Online Library (Open Access Collection); PubMed Central; Web of Science - Social Sciences Citation Index – 2021<img src="https://exlibris-pub.s3.amazonaws.com/fromwos-v2.jpg" /> |
| subjects | Adults Advisory groups Age Aphasia Communication Consent Context Employment Health Care Sciences & Services Health Policy & Services Interviews Life Sciences & Biomedicine Original Parents & parenting Participation patient involvement Patient participation Patient satisfaction Public, Environmental & Occupational Health Qualitative analysis Qualitative research rehabilitation Science & Technology Social education Social interactions Social networks Social organization Social participation Social support Stroke Training Traumatic brain injury |
| title | ‘I hated being ghosted’ – The relevance of social participation for living well with post‐stroke aphasia: Qualitative interviews with working aged adults |
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