Notes from the hospital bedside : reflections on researcher roles and responsibilities at the end of life in dementia

Swarbrick, Caroline and Sampson, Elizabeth and Keady, John (2017) Notes from the hospital bedside : reflections on researcher roles and responsibilities at the end of life in dementia. Quality in Ageing and Older Adults, 18 (3). pp. 201-211. ISSN 2044-1827

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PurposeThis study explores some of the ethical and practical dilemmas faced by an experienced researcher in undertaking research with a person with dementia [whom we have called Amy]. Amy died shortly after a period of observation had ended and the family subsequently consented to the data being shared. Design/methodology/approachThis individual case study presentation was nested within a larger study conducted in England and Scotland between 2013 - 2014. The overall aim of the main study was to investigate how health care professionals and informal carers recognised, assessed and managed pain in patients living with dementia in a range of acute settings.FindingsThe presented case study of Amy raises three critical reflection points: i) Researcher providing care, i.e. the place and positioning of compassion in research observation; ii) What do the stories mean? i.e. the reframing of Amy’s words, gestures and behaviours as (end of) life review, potentially highlights unresolved personal conflicts and reflections on loss; and iii) Communication is embodied i.e. the need to move beyond the recording of words to represent lived experience and into more multi-sensory methods of data capture. Originality/valueResearcher guidance and training about end of life observations in dementia is presently absent in the literature and this case study stimulates debate in a much overlooked area, including the role of ethics committees.

Item Type:
Journal Article
Journal or Publication Title:
Quality in Ageing and Older Adults
Additional Information:
This article is (c) Emerald Group Publishing and permission has been granted for this version to appear here. Emerald does not grant permission for this article to be further copied/distributed or hosted elsewhere without the express permission from Emerald Group Publishing Limited.
Uncontrolled Keywords:
?? ethicspaindementiaresearcher reflexivityend of lifelife reviewgerontologycommunity and home carecare planning ??
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Deposited On:
29 Mar 2019 14:10
Last Modified:
16 Jul 2024 11:01