TY - JOUR

T1 - Notes from the hospital bedside

T2 - reflections on researcher roles and responsibilities at the end of life in dementia

AU - Swarbrick, Caroline

AU - Sampson, Elizabeth

AU - Keady, John

N1 - 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.

PY - 2017/8/1

Y1 - 2017/8/1

N2 - 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.

AB - 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.

KW - Ethics

KW - Pain

KW - Dementia

KW - Researcher reflexivity

KW - End of life

KW - Life review

U2 - 10.1108/QAOA-09-2016-0038

DO - 10.1108/QAOA-09-2016-0038

M3 - Journal article

VL - 18

SP - 201

EP - 211

JO - Quality in Ageing and Older Adults

JF - Quality in Ageing and Older Adults

SN - 2044-1827

IS - 3

ER -