Literature DB >> 20920020

Actively involving people with dementia in qualitative research.

Jane McKeown1, Amanda Clarke, Christine Ingleton, Julie Repper.   

Abstract

AIMS AND
OBJECTIVES: This paper aims to: • Consider the major challenges to involving people with dementia in qualitative research. • Critique a process consent framework. • Demonstrate the need for nurses and researchers to explore these issues in research and practice with people with dementia. • Consider the impact of the Mental Capacity Act 2005 on research with people with dementia. To achieve its aims, the authors will draw on current literature and use examples which explores the use of life story work with people with dementia by taking a qualitative approach.
BACKGROUND: There is acceptance that researchers should consider ways of actively involving people with dementia in research as participants where appropriate to answering specific research questions. Process consent methods have been advocated as an ethical way forward in recruiting and gaining consent for people with dementia, the Mental Capacity Act offers guidance to both practitioners and researchers. DESIGN AND
METHOD: This paper does not seek to be a comprehensive review of the current literature but is a discussion paper appraising a process consent framework against current literature and drawing on the lead author's PhD study, exploring life story work with older people with dementia. RESULTS AND
CONCLUSIONS: The Mental Capacity Act and process consent frameworks compliment one another, and their use should be considered when researching issues affecting older people with dementia. Researchers and practitioners should work more closely to ensure that the principles of process consent are achieved. Process consent models can equally be applied to everyday nursing practice. RELEVANCE TO CLINICAL PRACTICE: Process consent models can provide an ethical and practical framework to ensure that consent is continually assessed in people with dementia with all clinical interventions. The paper also draws on literature exploring practical ways of involving people with dementia in evaluating service delivery.
© 2010 The Authors. Journal compilation © 2010 Blackwell Publishing Ltd.

Entities:  

Mesh:

Year:  2010        PMID: 20920020     DOI: 10.1111/j.1365-2702.2009.03136.x

Source DB:  PubMed          Journal:  J Clin Nurs        ISSN: 0962-1067            Impact factor:   3.036


  21 in total

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4.  Visiting Out-of-Home Places When Living With Dementia: A Cross-Sectional Observational Study: Visiter des lieux hors du domicile lorsque l'on vit avec une démence: étude transversale observationnelle.

Authors:  Isabel Margot-Cattin; Catherine Ludwig; Nicolas Kühne; Gunilla Eriksson; André Berchtold; Louise Nygard; Anders Kottorp
Journal:  Can J Occup Ther       Date:  2021-03-22       Impact factor: 1.614

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Authors:  Samantha Dequanter; Maaike Fobelets; Iris Steenhout; Marie-Pierre Gagnon; Anne Bourbonnais; Samira Rahimi; Ronald Buyl; Ellen Gorus
Journal:  BMC Geriatr       Date:  2022-04-28       Impact factor: 4.070

6.  Disruption, control and coping: responses of and to the person with dementia in hospital.

Authors:  Davina Porock; Philip Clissett; Rowan H Harwood; John R F Gladman
Journal:  Ageing Soc       Date:  2013-09-19

7.  A protocol to evaluate the impact of involvement of older people with dementia and age-related hearing and/or vision impairment in a multi-site European research study.

Authors:  Jahanara Miah; Piers Dawes; Iracema Leroi; Suzanne Parsons; Bella Starling
Journal:  Res Involv Engagem       Date:  2018-11-22

8.  Dualities of dementia illness narratives and their role in a narrative economy.

Authors:  Alexandra Hillman; Ian Rees Jones; Catherine Quinn; Sharon M Nelis; Linda Clare
Journal:  Sociol Health Illn       Date:  2018-04-16

9.  Journeying through Dementia, a community-based self-management intervention for people aged 65 years and over: a feasibility study to inform a future trial.

Authors:  Kirsty Sprange; Gail A Mountain; Katy Shortland; Claire Craig; Daniel Blackburn; Peter Bowie; Kirsty Harkness; Maggie Spencer
Journal:  Pilot Feasibility Stud       Date:  2015-11-30

10.  Behavioural activation written self-help to improve mood, wellbeing and quality of life in people with dementia supported by informal carers (PROMOTE): a study protocol for a single-arm feasibility study.

Authors:  Paul Farrand; Joanne Woodford; David Llewellyn; Martin Anderson; Shanker Venkatasubramanian; Obioha C Ukoumunne; Anna Adlam; Chris Dickens
Journal:  Pilot Feasibility Stud       Date:  2016-08-04
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