Design and pilot of a PREM for people with moderate-advanced dementia
Research type
Research Study
Full title
Design and pilot of a patient-reported experience measure for people with moderate-advanced dementia
IRAS ID
170826
Contact name
Annette Lock
Contact email
Sponsor organisation
Royal Holloway, University of London
Duration of Study in the UK
0 years, 10 months, 1 days
Research summary
Dementia is associated with progressive impairments in cognition and communication which can lead to difficulties in interaction (Clare, 2008). This may make it difficult for people with dementia to express their views about their own care, which could mean that their views are neglected and their environment is not responsive to their needs. Services tend to used patient-reported experience measures (PREMs) to get feedback from service users in order to facilitate person-centred care, but these tend to be questionnaires which are too complex for people with moderate-advanced dementia to complete.
This project will aim to produce a PREM that is suitable for use with service users with moderate-advanced dementia and trial with patients. Staff in an older peoples’ community mental health service will be interviewed about their experiences of using the PREM with patients. Focus groups and cognitive interviews will be used to consult service users/carers and professionals about adapting an existing PREM from services for people with learning disabilities (PLD) for use with people with dementia (PWD). The CMHT staff will then be trained to use the PREM and to each trial it with at least three service users. Semi-structured interviews will be conducted with staff to find out about obstacles in using the PREM to gather meaningful feedback from service users about their care. Thematic analysis will be used to analyse interview transcripts. The results will be shared with service users, carers and professionals so that they can provide a commentary which can inform further refinement of the measure. The results of the analysis will be reviewed to explore how the PREM can be further refined. At the final stage, the PREM will be presented in a form which is ready to be subjected to further formal procedures to develop it for use in services.
REC name
London - Harrow Research Ethics Committee
REC reference
15/LO/1369
Date of REC Opinion
22 Oct 2015
REC opinion
Further Information Favourable Opinion