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A processural consent methodology with people diagnosed with dementia

A processural consent methodology with people diagnosed with dementia Purpose – The purpose of this paper is to develop an approach within the guidance of the Mental Capacity Act (2005) to meaningfully include people diagnosed with dementia (PDwD) in research endeavours. Design/methodology/approach – As part of a broader study of self-authored narratives of care experiences, PDwD were involved in the development and implementation of a process method of consent, in which consent conversations were contextual, responsive and ongoing, and were audited with the use of field diaries. Findings – Working within people’s relational contexts (i.e. care staff and family), eight participants with a range of dementia diagnoses and care needs made and verbally communicated research-related decisions. A desire to participate was consistently conveyed across research encounters, regardless of the extent of memory problems. Participants also demonstrated keen awareness of the links between memory problems, rights and inclusion, alongside a sense of personal identity and the capacities to clearly communicate this. Research limitations/implications – A process model of consent encouraged formal reflection upon ethical and pragmatic complexities, and is relevant to persons diagnosed with dementia making both care- and research-related decisions. Further work is needed to include people with a broader range of communication support needs. Originality/value – This research demonstrates substantial possibilities for eliciting and responding to the views of people with dementia diagnoses (previously excluded from research). Results open opportunities for genuine long-term research and care partnerships with PDwD for practice, service and policy development. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Quality in Ageing and Older Adults Emerald Publishing

A processural consent methodology with people diagnosed with dementia

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Publisher
Emerald Publishing
Copyright
Copyright © Emerald Group Publishing Limited
ISSN
1471-7794
DOI
10.1108/QAOA-03-2015-0012
Publisher site
See Article on Publisher Site

Abstract

Purpose – The purpose of this paper is to develop an approach within the guidance of the Mental Capacity Act (2005) to meaningfully include people diagnosed with dementia (PDwD) in research endeavours. Design/methodology/approach – As part of a broader study of self-authored narratives of care experiences, PDwD were involved in the development and implementation of a process method of consent, in which consent conversations were contextual, responsive and ongoing, and were audited with the use of field diaries. Findings – Working within people’s relational contexts (i.e. care staff and family), eight participants with a range of dementia diagnoses and care needs made and verbally communicated research-related decisions. A desire to participate was consistently conveyed across research encounters, regardless of the extent of memory problems. Participants also demonstrated keen awareness of the links between memory problems, rights and inclusion, alongside a sense of personal identity and the capacities to clearly communicate this. Research limitations/implications – A process model of consent encouraged formal reflection upon ethical and pragmatic complexities, and is relevant to persons diagnosed with dementia making both care- and research-related decisions. Further work is needed to include people with a broader range of communication support needs. Originality/value – This research demonstrates substantial possibilities for eliciting and responding to the views of people with dementia diagnoses (previously excluded from research). Results open opportunities for genuine long-term research and care partnerships with PDwD for practice, service and policy development.

Journal

Quality in Ageing and Older AdultsEmerald Publishing

Published: Dec 14, 2015

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