Prognostication in Poststroke Aphasia: Perspectives of Significant Others of People With Aphasia on Receiving Information About Recovery.

Cheng, BBY; Ryan, BJ; Copland, DA; Wallace, SJ

Prognostication in Poststroke Aphasia: Perspectives of Significant Others of People With Aphasia on Receiving Information About Recovery.

Cheng, BBY Ryan, BJ Copland, DA Wallace, SJ

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Publisher:: American Speech Language Hearing Association
Publication Type:: Journal Article
Citation:: Am J Speech Lang Pathol, 2022, 31, (2), pp. 896-911
Issue Date:: 2022-03-10

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Field	Value	Language
dc.contributor.author	Cheng, BBY
dc.contributor.author	Ryan, BJ
dc.contributor.author	Copland, DA
dc.contributor.author	Wallace, SJ
dc.date.accessioned	2023-07-07T20:47:32Z
dc.date.available	2023-07-07T20:47:32Z
dc.date.issued	2022-03-10
dc.identifier.citation	Am J Speech Lang Pathol, 2022, 31, (2), pp. 896-911
dc.identifier.issn	1058-0360
dc.identifier.issn	1558-9110
dc.identifier.uri	http://hdl.handle.net/10453/171317
dc.description.abstract	PURPOSE: Knowing what to expect poststroke is important for many significant others of people with aphasia, yet an understanding of their perceptions and preferences in receiving prognostic information is limited. This knowledge is needed to inform the formulation and delivery of aphasia prognoses as conversations about prognosis can be harmful or helpful depending on their alignment with key stakeholder perspectives. Our preliminary study sought insight into the perspectives of significant others of people with aphasia on receiving prognostic information, with an aim toward informing evidence-based practice in aphasia prognostication. METHOD: We interviewed seven significant others of people with aphasia, 3-12 months poststroke. The interviews were semistructured, conducted one-to-one, and analyzed qualitatively using reflexive thematic analysis. RESULTS: Five themes were drawn from the interviews: (a) You don't know what you don't know. (b) Having them alive is the best you can ask for. (c) Recovery in the eye of the beholder. (d) Outcomes don't matter unless they help me help them. (e) It's my prognosis too if I'm living with aphasia. CONCLUSIONS: A significant other's prognosis-related perceptions and preferences are products of their poststroke reality and may inadvertently shape that of the person with aphasia. In order to facilitate recovery, prognostication practices need to consider the needs of significant others both as providers of care and as requiring care themselves for their first-hand experiences of third-party disability.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	American Speech Language Hearing Association
dc.relation.ispartof	Am J Speech Lang Pathol
dc.relation.isbasedon	10.1044/2021_AJSLP-21-00170
dc.rights	info:eu-repo/semantics/closedAccess
dc.subject	1103 Clinical Sciences, 1702 Cognitive Sciences, 2004 Linguistics
dc.subject.classification	Speech-Language Pathology & Audiology
dc.subject.classification	3903 Education systems
dc.subject.classification	4201 Allied health and rehabilitation science
dc.subject.classification	4704 Linguistics
dc.subject.mesh	Aphasia
dc.subject.mesh	Communication
dc.subject.mesh	Disabled Persons
dc.subject.mesh	Humans
dc.subject.mesh	Surveys and Questionnaires
dc.subject.mesh	Humans
dc.subject.mesh	Aphasia
dc.subject.mesh	Communication
dc.subject.mesh	Disabled Persons
dc.subject.mesh	Surveys and Questionnaires
dc.subject.mesh	Aphasia
dc.subject.mesh	Communication
dc.subject.mesh	Disabled Persons
dc.subject.mesh	Humans
dc.subject.mesh	Surveys and Questionnaires
dc.title	Prognostication in Poststroke Aphasia: Perspectives of Significant Others of People With Aphasia on Receiving Information About Recovery.
dc.type	Journal Article
utslib.citation.volume	31
utslib.location.activity	United States
utslib.for	1103 Clinical Sciences
utslib.for	1702 Cognitive Sciences
utslib.for	2004 Linguistics
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
utslib.copyright.status	closed_access	*
dc.date.updated	2023-07-07T20:47:32Z
pubs.issue	2
pubs.publication-status	Published
pubs.volume	31
utslib.citation.issue	2

Abstract:

PURPOSE: Knowing what to expect poststroke is important for many significant others of people with aphasia, yet an understanding of their perceptions and preferences in receiving prognostic information is limited. This knowledge is needed to inform the formulation and delivery of aphasia prognoses as conversations about prognosis can be harmful or helpful depending on their alignment with key stakeholder perspectives. Our preliminary study sought insight into the perspectives of significant others of people with aphasia on receiving prognostic information, with an aim toward informing evidence-based practice in aphasia prognostication. METHOD: We interviewed seven significant others of people with aphasia, 3-12 months poststroke. The interviews were semistructured, conducted one-to-one, and analyzed qualitatively using reflexive thematic analysis. RESULTS: Five themes were drawn from the interviews: (a) You don't know what you don't know. (b) Having them alive is the best you can ask for. (c) Recovery in the eye of the beholder. (d) Outcomes don't matter unless they help me help them. (e) It's my prognosis too if I'm living with aphasia. CONCLUSIONS: A significant other's prognosis-related perceptions and preferences are products of their poststroke reality and may inadvertently shape that of the person with aphasia. In order to facilitate recovery, prognostication practices need to consider the needs of significant others both as providers of care and as requiring care themselves for their first-hand experiences of third-party disability.

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http://hdl.handle.net/10453/171317