Sikes, P. and Hall, M. (2018) "It'd Be Easier If She'd Died'': Researching and Reporting "Taboo'' Issues. In: International Journal of Qualitative Methods. Qualitative Health Research Conference, 2017, 17-19 Oct 2017, Quebec City, QC. Sage Publications , p. 50.
Abstract
In the UK 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 of both those with dementia and of their family members. Failing to represent 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. This presentation draws on stories told by twenty-two, 6- to 30-year-old participants in an Alzheimer’s Society (UK) Funded project that took a narrative and auto/biographical approach to investigate the perceptions and experiences of children and young people who have a parent with young onset dementia. Sometimes the stories were not easy to hear, especially when they challenged dominant master narratives around dementia. When these stories were reported in the national media, there was some vociferous criticism. Having asked the young people to share how life was for them, the researchers felt ethically bound to respect and disseminate their accounts. Researching and representing ‘‘taboo’’ and sensitive topics and views raise a myriad of issues that will be explored here.
Metadata
Item Type: | Proceedings Paper |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | 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 pages (https://us.sagepub.com/en-us/nam/open-access-at-sage). |
Dates: |
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Institution: | The University of Sheffield |
Academic Units: | The University of Sheffield > Faculty of Social Sciences (Sheffield) > School of Education (Sheffield) |
Funding Information: | Funder Grant number ALZHEIMER'S SOCIETY 203 (AS-PG-2013-038) |
Depositing User: | Symplectic Sheffield |
Date Deposited: | 24 Apr 2018 14:54 |
Last Modified: | 19 Dec 2022 13:49 |
Published Version: | https://doi.org/10.1177/1609406917748701 |
Status: | Published |
Publisher: | Sage Publications |
Refereed: | Yes |
Identification Number: | 10.1177/1609406917748701 |
Related URLs: | |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:129732 |