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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Abstract

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.
Subjects:
Departments: Faculty of Health and Medicine > Health Research
ID Code: 132224
Deposited By: ep_importer_pure
Deposited On: 29 Mar 2019 14:10
Refereed?: Yes
Published?: Published
Last Modified: 10 Jun 2019 17:47
URI: https://eprints.lancs.ac.uk/id/eprint/132224

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