Decision-making involving people with memory problems
Research type
Research Study
Full title
Improving decision-making involving people with memory problems
IRAS ID
321260
Contact name
Traci Walker
Contact email
Sponsor organisation
Clinical Research & Innovation Office (CRIO) at Sheffield Teaching Hospitals NHS Foundation Trust
Duration of Study in the UK
3 years, 6 months, 30 days
Research summary
Most care decisions involving people with dementia (PWD) are made in conversations involving three parties: the PWD, their carer, and a healthcare practitioner (HCP). This study explores two gaps in knowledge: how decisions are made when three parties are involved, and how decisions are made when one of those parties has cognitive difficulties. This four-year study aims to describe how best to involve PWD in decision making as much as possible, for as long as possible.
We focus on the following questions: What communication strategies are HCPs and carers using to involve PWD in decision making? How do PWD respond to these? Our study will apply Conversation Analysis to existing and new datasets, in the form of 3 workpackages.
WP1: Analysis of extant recordings of conversations between neurologists, patients and accompanying persons (i.e. three-party / triadic interactions) from previous studies collected in outpatient clinics in Sheffield.
WP2: Collection and analysis of a new cross-sectional database of 100 new recordings of clinical encounters between patients who have or subsequently receive a dementia diagnosis, their carers, and HCP.
WP3: Recruit 10 PWD and their carers from WP2 as participant-researchers, to record their medical appointments (eg., with dementia nurses, occupational therapists, GPs) for up to two years. This will allow us to compare interactions with different HCPs and analyse both changes in PWDs’ contributions and in the role of accompanying persons over time. The team will engage both PWD and their carers in deciding what encounters to record, as well as explore their perspectives on when and how they (both) were involved successfully in shared decision-making.
Our outputs will include online training packages, short videos and leaflets. Those for carers will help them support PWD in decision-making, and those for HCP will help ensure that PWD are given every chance to express their choices when making decisions.
REC name
Wales REC 6
REC reference
23/WA/0147
Date of REC Opinion
8 Jun 2023
REC opinion
Further Information Favourable Opinion