Involving people living with dementia in research: an accessible modified Delphi survey for core outcome set development

Trials

Faraz Ahmed¹  Andrew J. E. Harding¹  Hazel Morbey¹  Siobhan T. Reilly¹  Caroline Swarbrick²  Ruth Elvish²  John Keady²  Paula R. Williamson³ 

[1] Division of Health Research, Faculty of Health and Medicine, Furness College, Lancaster University;Division of Nursing, Midwifery and Social Work, School of Health Sciences, Faculty of Biology, Medicine and Health, The University of Manchester;MRC North West Hub for Trials Methodology Research, Department of Biostatistics, The University of Liverpool;

关键词: Co-research;    Dementia;    Delphi methods;    Inclusive research;    Public involvement;    Core outcome set;   

DOI  :  10.1186/s13063-018-3069-6

来源: DOAJ

【 摘 要 】

Abstract 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.

【 授权许可】

Unknown