A processural consent methodology with people diagnosed with dementia

Article


Hughes, Tessa and Castro, M. 2015. A processural consent methodology with people diagnosed with dementia. Quality in Ageing and Older Adults. 16 (4), pp. 222-234. https://doi.org/10.1108/QAOA-03-2015-0012
AuthorsHughes, Tessa and Castro, M.
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.

JournalQuality in Ageing and Older Adults
Journal citation16 (4), pp. 222-234
ISSN1471-7794
Year2015
PublisherEmerald
Accepted author manuscript
Digital Object Identifier (DOI)https://doi.org/10.1108/QAOA-03-2015-0012
Web address (URL)https://doi.org/10.1108/QAOA-03-2015-0012
Publication dates
Online14 Dec 2015
Publication process dates
Deposited06 Dec 2018
Accepted19 Sep 2015
Accepted19 Sep 2015
Copyright information© 2015 Emerald
LicenseAll rights reserved
Permalink -

https://repository.uel.ac.uk/item/8538q

Download files


Accepted author manuscript
  • 148
    total views
  • 336
    total downloads
  • 3
    views this month
  • 4
    downloads this month

Export as

Related outputs

Clinical Psychology
Castro, M., Whiteley, Christopher and Boyle, Mary 2013. Clinical Psychology. in: Bayne, Rowan and Jinks, Gordon (ed.) Applied Psychology: Research, Training and Practice Second Edition SAGE Publications.
Are low-intensity CBT interventions effective and meaningful for the Latino community in the UK?
Lopez, Jose E., Rees, Melinda and Castro, M. 2013. Are low-intensity CBT interventions effective and meaningful for the Latino community in the UK? International Journal of Culture and Mental Health. 7 (4), pp. 410-425. https://doi.org/10.1080/17542863.2013.836237
Cuban internationalism – An alternative form of globalization
Castro, M., Melluish, Steve and Lorenzo, Alexis 2014. Cuban internationalism – An alternative form of globalization. International Review of Psychiatry. 26 (5), pp. 595-601. https://doi.org/10.3109/09540261.2014.920770
Teaching Ethics for Professional Practice
Castro, M. 2015. Teaching Ethics for Professional Practice. in: Tribe, Rachel and Morrissey, Jean (ed.) Handbook of Professional and Ethical Practice for Psychologists, Counsellors and Psychotherapists Routledge.
Teaching Liberation Psychology
Castro, M. and Afuape, Taiwo 2015. Teaching Liberation Psychology. in: Afuape, Taiwo and Hughes, Gillian (ed.) Liberation Practices: Towards Emotional Wellbeing Through Dialogue Routledge.
Liberatory praxis alongside elders
Castro, M. 2015. Liberatory praxis alongside elders. in: Afuape, Taiwo and Hughes, Gillian (ed.) Liberation Practices: Towards Emotional Wellbeing Through Dialogue Routledge.
Poetry Written from the Words of People Given a Diagnosis of Dementia: A Narrative Analysis
Castro, M. and Clark-McGhee, Kitty 2016. Poetry Written from the Words of People Given a Diagnosis of Dementia: A Narrative Analysis. in: Reid, Hazel and West, Linden (ed.) Constructing Narratives of Continuity and Change: A transdisciplinary approach to researching lives CRC Press.
Humanising Mental Health Contexts
Castro, M. 2017. Humanising Mental Health Contexts. in: Lane, Pauline and Tribe, Rachel (ed.) Anti-discriminatory Practice in Mental Health Care for Older People Jessica Kingsley Publishers. pp. 48-68
Constructing ‘the Psychopath’: A Discourse Analysis of Psychologists’ Understandings of Psychopathy
Clark-McGhee, Kitty and Castro, M. 2018. Constructing ‘the Psychopath’: A Discourse Analysis of Psychologists’ Understandings of Psychopathy. Asian Journal of Human Services. 14 (0), pp. 38-52. https://doi.org/10.14391/ajhs.14.38
Hearing the Unheard: An Interdisciplinary, Mixed Methodology Study of Women’s Experiences of Hearing Voices (Auditory Verbal Hallucinations)
McCarthy-Jones, Simon, Castro, M., McCarthy-Jones, Roseline, Dillon, Jacqui, Cooper-Rompato, Christine, Kieran, Kathryn, Kaufman, Milissa and Blackman, Lisa 2015. Hearing the Unheard: An Interdisciplinary, Mixed Methodology Study of Women’s Experiences of Hearing Voices (Auditory Verbal Hallucinations). Frontiers in Psychiatry. 6 (181).
A narrative analysis of poetry written from the words of people given a diagnosis of dementia
Clark-McGhee, K. and Castro, M. 2015. A narrative analysis of poetry written from the words of people given a diagnosis of dementia. Dementia. 14 (1), pp. 9-26. https://doi.org/10.1177/1471301213488116
Commentary: Psychology in Cuba as an example of Possibilities for Psychology in the UK
Castro, M. 2011. Commentary: Psychology in Cuba as an example of Possibilities for Psychology in the UK. InternatIonal Journal of Cuban Studies. 3 (4), pp. 357-360.