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      Visioning change: Co-producing a model of involvement and engagement in research (Innovative Practice)

      Author(s): 1 , 2 , 3 , 1 , 4 , Scottish Dementia Working Group
      Publication date Created:
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      Journal: Dementia
      Publisher: SAGE Publications

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          Abstract

          The involvement of people living with dementia in research has traditionally been located in the realms of ‘subject’ or ‘participant’. However, there has been an increase in demand for greater transparency by academic bidding teams (particularly within the UK) in demonstrating how people with a lived experience have been and will be involved in the research process. Located within the Economic and Social Research Council/National Institute for Health Research (ESRC/NIHR)-funded Neighbourhoods and Dementia Study (2014–2019), led by The University of Manchester (UK), this paper outlines the development of the CO-researcher INvolvement and Engagement in Dementia (COINED) Model, which was co-produced alongside three independent groups of people living with dementia: Open Doors, the Scottish Dementia Working Group and EDUCATE.

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          Actively involving people with dementia in qualitative research.

          Jane McKeown, Amanda Clarke, Christine Ingleton … (2010)
          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.
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            Participatory action research with older adults: key principles in practice.

            Meredith Minkler, Thomas Blair (2009)
            Although participatory action research (PAR) is increasingly viewed as an important complement to traditional investigator-driven research, relatively little PAR has taken place in which older adults have been prominent partners. This article provides a review of the literature on PAR in gerontology, highlighting key studies and their implications.
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              Critical appraisal guidelines for assessing the quality and impact of user involvement in research.

              David Wright, Claire Foster, Ziv Amir … (2010)
              The involvement of service users in the design and conduct of health research has developed significantly in the UK in recent years. Involving service users is now seen as a core component of good research practice for all forms of health research. Given the important role that users have in health research, it is necessary to develop guidelines for their effective involvement. Whilst guidelines are currently being formulated, there remain no criteria with which to assess user involvement in published studies and funding applications. This study offers guidelines for appraising the quality and impact of user involvement in published papers and grant applications. Appraisal guidelines for user involvement have been developed on the basis of available literature and experiences from studies involving cancer patients and carers in the design and conduct of research. Nine appraisal criteria have been developed. Criteria include issues such as 'Is the rationale for involving users clearly demonstrated?', 'Is the level of user involvement appropriate?', 'Is the recruitment strategy appropriate?', and 'Is the nature of training appropriate?' Generating and applying guidelines is vital if the impact of user involvement agenda in health research is to be understood. © 2010 University of Southampton. Health Expectations © 2010 Blackwell Publishing Ltd.
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                Author and article information

                Journal
                Title: Dementia
                Abbreviated Title: Dementia
                Publisher: SAGE Publications
                ISSN (Print): 1471-3012
                ISSN (Electronic): 1741-2684
                Publication date Created: April 13 2018
                Publication date Created: November 2019
                Publication date (Electronic): October 16 2016
                Publication date (Print): November 2019
                Volume: 18
                Issue: 7-8
                Pages: 3165-3172
                Affiliations
                [1 ]Division of Nursing, Midwifery and Social Work, University of Manchester, UK
                [2 ]Greater Manchester West Mental Health NHS Foundation Trust, UK
                [3 ]Pennine Care NHS Foundation Trust, UK
                [4 ]Division of Nursing, Midwifery and Social Work, University of Manchester, UK; Greater Manchester West Mental Health NHS Foundation Trust, UK
                Article
                DOI: 10.1177/1471301216674559
                PubMed ID: 27753612
                SO-VID: a6839c13-ad3e-4248-bb4c-65469f565b4d
                Copyright © © 2019
                License:

                http://journals.sagepub.com/page/policies/text-and-data-mining-license

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