Methods for accessing the ‘voice’ of older people with dementia in research

Researchers: Katie Sworn, Gillian Parker (supervisor), Stuart Parker (supervisor, University of Sheffield)

Funder: Economic and Social Research Council

Duration: October 2011 to September 2014

Background

The project will look at the increasing numbers of people who live with impaired cognition or communication. These groups have traditionally been without ‘voice’ in research about their lives and needs, particularly in health services research. Yet policy formulation increasingly emphasises evidence and ‘what works’. Excluding groups from research about policy and intervention when they may be its main recipients is creating a new form of democratic deficit. One main group of methods to elicit views from people with impaired cognition or communication is the non-verbal techniques generally referred to as augmented and alternative communication (AAC). However, while a growing research literature describes the use of AAC methods in research, there is little methodological research about how these alternatives have been tested and applied, what approaches to analysis have been used with the material they generate, the extent to which messages from them are considered valid or reliable, and whether they do, indeed, increase ‘voice’.

Methodology

This project will explore the methodological contribution of alternative research methods for capturing and analysing the views of people with dementia. This studentship will systematically review the literatures on augmented and alternative communication (AAC) methods in research amongst diverse populations living with impaired cognition. The project will seek to understand more fully the lives and needs of these groups, who have traditionally been without voice in research.

Policy and practice aims

Greater understanding of the contribution of AAC methods, including how they have been tested and applied and the data generated, will lead to the creation of ‘good practice’ guidelines for the use of such methods in research.

 

If you require further information about the project, please contact Katie Sworn