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      Misfitting the Research Process: Shaping Qualitative Research “in the Field” to Fit People Living With Dementia

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          Abstract

          It is increasingly recognized that people living with dementia should be included in qualitative research that foregrounds their voices, but traditional research approaches can leave less room for flexibility than is necessary. This article builds on others who have examined the challenges and rewards of the qualitative research process with people living with dementia. With reference to a specific project on communication and dementia, the research design adaptations needed at each step to turn a “misfit” into a “fit” are examined. Misfitting, as a concept related to social practice theories, is used to argue the need for a coproduced and flexible approach to research design and data collection. Recommendations include being willing to adapt research methods, data collection locations, and aims of the project to fit participants’ competencies, preferences, and realities; spending sufficient time getting to get to know staff and potential participants to build relationships; working round care practices and routines to minimize disruption; and using observational/visual methods can help include people living with dementia at each stage. People with dementia require researchers in the field to be creative in their methods, reflexive in their approach, and person-centered in their goals. Those adaptations can fundamentally change the ways in which the social practice of research is shaped.

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          Most cited references42

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          Toward a Theory of Social Practices: A Development in Culturalist Theorizing

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            Changing the Social Relations of Research Production?

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              Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement).

              This paper reflects Alzheimer Europe's position on PPI (patient and public involvement) in the context of dementia research and highlights some of the challenges and potential risks and benefits associated with such meaningful involvement. The paper was drafted by Alzheimer Europe in collaboration with members of INTERDEM and the European Working Group of People with Dementia. It has been formally adopted by the Board of Alzheimer Europe and endorsed by the Board of INTERDEM and by the JPND working group 'Dementia Outcome Measures - Charting New Territory'. Alzheimer Europe is keen to promote the involvement of people with dementia in research, not only as participants but also in the context of PPI, by generating ideas for research, advising researchers, being involved in consultations and being directly involved in research activities. This position paper is in keeping with this objective. Topics covered include, amongst others, planning involvement, establishing roles and responsibilities, training and support, managing information and input from PPI, recognising the contribution of people with dementia involved in research in this way, promoting and protecting the rights and well-being of people with dementia, training and support, and promoting an inclusive approach and the necessary infrastructure for PPI in dementia research.
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                Author and article information

                Journal
                International Journal of Qualitative Methods
                International Journal of Qualitative Methods
                SAGE Publications
                1609-4069
                1609-4069
                January 01 2020
                January 10 2020
                January 01 2020
                : 19
                : 160940691989592
                Affiliations
                [1 ]School for Policy Studies, University of Bristol, United Kingdom
                [2 ]School for Education, University of Bristol, United Kingdom
                Article
                10.1177/1609406919895926
                2654a850-4e53-42d3-8bc2-5fed8006916c
                © 2020

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

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