The 'Forget Me Not' approach: Coproducing guidance videos v1.0
Research type
Research Study
Full title
The 'Forget Me Not' approach: Co-producing accessible guidance videos for communicating and receiving a dementia diagnosis.
IRAS ID
326204
Contact name
Jemima Dooley
Contact email
Sponsor organisation
University of Bristol
Duration of Study in the UK
1 years, 3 months, 31 days
Research summary
We have 101 video recordings of meetings where doctors tell people they have dementia from the NIHR RfPB funded ShareD project (Grant Reference Number PB-PG-1111-26063, REC reference number 13/LO/1309). We will use these to develop guidance videos on communication about dementia.
Methods:
Stage 1: Designing the videos:
We will hold workshops with 20 people with dementia, 10 companions and 10 clinicians to watch recordings of diagnosis meetings. We will discuss the communication and talk about peoples’ own experiences of diagnosis. We will find the best ways to tell people they have dementia. The groups will be both in-person and virtual, with a
range of people with different types of dementia.Stage 2: Filming the videos:
We will use what we find out in the workshops to develop three videos: (1) how to deliver dementia diagnoses (for clinicians), (2) what to expect when receiving a diagnosis (for people with dementia), and (3) how to support people receiving a diagnosis (for companions). Real-life examples of the communication will be re-enacted using actors for clinicians and people with dementia playing ‘patients’. The videos will also show people with dementia talking about their diagnosis experience.
Stage 3: Testing the videos:
We will interview clinicians and people undergoing tests for dementia in Bristol, Exeter and Gateshead. We will show them the videos and ask for their feedback. We will interview them again a week later to see whether the videos helped. We will use their feedback to make changes before publishing the videos more widely.
Dissemination: The videos will be promoted through a launch event. It will also be advertised through our links with dementia services and clinical groups. The Forget Me Nots have created communication training videos before which have been used internationally. We think these new videos will have the same impact.
REC name
Wales REC 7
REC reference
23/WA/0210
Date of REC Opinion
1 Aug 2023
REC opinion
Favourable Opinion