Involving people living with dementia in research: an accessible modified Delphi survey for core outcome set development
Autor: | Faraz Ahmed, Ruth Elvish, Andrew Harding, Hazel Morbey, Caroline Swarbrick, Siobhan Reilly, Paula R Williamson, John Keady |
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Rok vydání: | 2019 |
Předmět: |
Delphi Technique
Delphi method Medicine (miscellaneous) Inclusive research 03 medical and health sciences 0302 clinical medicine Co-research medicine Humans Dementia Pharmacology (medical) 030212 general & internal medicine 10. No inequality Set (psychology) Referral and Consultation Neighbourhood (mathematics) lcsh:R5-920 Medical education Data collection business.industry Methodology Stakeholder Core outcome set medicine.disease Delphi methods Public involvement Research Design Scale (social sciences) Patient Participation Neighbourhood lcsh:Medicine (General) business Inclusion (education) 030217 neurology & neurosurgery |
Zdroj: | Trials, Vol 20, Iss 1, Pp 1-10 (2019) Trials |
ISSN: | 1745-6215 |
DOI: | 10.1186/s13063-018-3069-6 |
Popis: | Background Recent recommendations promote the inclusion of people living with dementia beyond the role of ‘participant’ to involvement in all areas of the research process. This reflects shifts in dementia studies from ‘research on’ to ‘research with’ people living with the condition. In this paper, we describe the design process and features of a modified Delphi survey devised through consultation with people living with dementia. Methods This article focusses on consultation with people living with dementia and care partners to design an accessible Delphi survey to facilitate participation in core outcome set development. We used the COINED model of co-research developed through the ESRC/NIHR Neighbourhoods and Dementia Study to structure consultation on three features of modified Delphi design. Consultation was achieved through 1:1 and group sessions with a total of 28 individuals (18 people living with dementia and seven care partners). Results A flexible, responsive and adaptive approach to ongoing consultation with people living with dementia and care partners through 1:1 face-to-face sessions facilitated: (1) the development of a 3-point non-categorical importance scale; (2) the translation of 54 outcome areas into ‘accessible statements’ for a two-round Delphi survey administered to five stakeholder groups (people living with dementia, care partners, health and social care professionals, policy-makers and researchers); and (3) the delivery of a Delphi survey. These features of core outcome set development facilitated the involvement of people living with dementia in study design and as research participants in the data collection phase. Conclusions Involvement of people living with dementia as a key stakeholder group is not reflected in studies using Delphi survey methods for core outcome set development. Time, resources, researcher expertise and support, underpinned through targeted funding facilitate meaningful and productive inclusive approaches, now an expectation of dementia research. Trial registration The study is registered on the COMET Initiative. |
Databáze: | OpenAIRE |
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