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“It Would Be Easier If She’d Died”: Young People With Parents With Dementia Articulating Inadmissible Stories

In the U.K. context where the emphasis is (quite rightly) on living well with dementia, on positivity and enabling approaches, it can be difficult for researchers to investigate and report negative experiences. Failing to re-present perceptions and experiences as they are lived, however, does a seri...

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Detalles Bibliográficos
Autores principales: Hall, Mel, Sikes, Pat
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2017
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5467781/
https://www.ncbi.nlm.nih.gov/pubmed/28682738
http://dx.doi.org/10.1177/1049732317697079
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author Hall, Mel
Sikes, Pat
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Sikes, Pat
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description In the U.K. context where the emphasis is (quite rightly) on living well with dementia, on positivity and enabling approaches, it can be difficult for researchers to investigate and report negative experiences. Failing to re-present perceptions and experiences as they are lived, however, does a serious disservice to the research endeavor and can prevent policy and service development and positive change. In this article, we present some stories told by participants in an Alzheimer’s Society (United Kingdom) Funded project uniquely investigating the perceptions and experiences of children and young people who have a parent with dementia. Sometimes the stories were not easy to hear, especially when they challenged dominant master narratives around dementia. We discuss our view that when the young people we spoke with told us how things were for them, we were ethically bound to respect and disseminate their accounts.
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spelling pubmed-54677812017-06-29 “It Would Be Easier If She’d Died”: Young People With Parents With Dementia Articulating Inadmissible Stories Hall, Mel Sikes, Pat Qual Health Res General In the U.K. context where the emphasis is (quite rightly) on living well with dementia, on positivity and enabling approaches, it can be difficult for researchers to investigate and report negative experiences. Failing to re-present perceptions and experiences as they are lived, however, does a serious disservice to the research endeavor and can prevent policy and service development and positive change. In this article, we present some stories told by participants in an Alzheimer’s Society (United Kingdom) Funded project uniquely investigating the perceptions and experiences of children and young people who have a parent with dementia. Sometimes the stories were not easy to hear, especially when they challenged dominant master narratives around dementia. We discuss our view that when the young people we spoke with told us how things were for them, we were ethically bound to respect and disseminate their accounts. SAGE Publications 2017-04-11 2017-07 /pmc/articles/PMC5467781/ /pubmed/28682738 http://dx.doi.org/10.1177/1049732317697079 Text en © The Author(s) 2017 http://creativecommons.org/licenses/by-nc/4.0/ This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (http://www.creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle General
Hall, Mel
Sikes, Pat
“It Would Be Easier If She’d Died”: Young People With Parents With Dementia Articulating Inadmissible Stories
title “It Would Be Easier If She’d Died”: Young People With Parents With Dementia Articulating Inadmissible Stories
title_full “It Would Be Easier If She’d Died”: Young People With Parents With Dementia Articulating Inadmissible Stories
title_fullStr “It Would Be Easier If She’d Died”: Young People With Parents With Dementia Articulating Inadmissible Stories
title_full_unstemmed “It Would Be Easier If She’d Died”: Young People With Parents With Dementia Articulating Inadmissible Stories
title_short “It Would Be Easier If She’d Died”: Young People With Parents With Dementia Articulating Inadmissible Stories
title_sort “it would be easier if she’d died”: young people with parents with dementia articulating inadmissible stories
topic General
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5467781/
https://www.ncbi.nlm.nih.gov/pubmed/28682738
http://dx.doi.org/10.1177/1049732317697079
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