Person centred risk communications about epilepsy
Research type
Research Study
Full title
Person centred risk communication - what works best for people with epilepsy and their clinicians (a qualitative study)
IRAS ID
268922
Contact name
Cordet Smart
Contact email
Sponsor organisation
Cornwall Partnership NHS Foundation Trust
Duration of Study in the UK
1 years, 5 months, 31 days
Research summary
People with epilepsy are at an increased risk of death, and it is vital that clinicians discuss these risks with PWE to develop understanding of treatment protocols and risk-related management. Developed with our partner charity SUDEP (Sudden Unexpected Death in Epilepsy) Action, this research will produce guidance for clinicians about how to discuss risk in clinical consultations for People with Epilepsy (PWE).
Existing literature on how to support clinicians in having these conversations includes recommendations on when to start these conversations, possible support tools (e.g. checklists) however, guidance is vague resulting in varied, non-standardised discussions. Leaving PWE unable to make informed decisions about their care and has varied effects on patients’ awareness and motivation to reduce their risks. This study aims to identify and showcase best practice examples, to support future clinical discussions (& patient involvement) and produce guidelines exploring how best to hold conversations about risk.
Appointments between PWE and their clinician will be recorded and analysed using ‘Conversation Analysis’ (CA) to highlight examples of the most useful and effective practices clinicians use. These best practice examples will be supported by brief reflections from clinicians (post-consultation) and PWE (via telephone interviews) about their experiences of these conversations. Analyses of the consultations and reflection data will involve the research team, including SUDEP Action, to identify and explore patterns and themes in the conversations using CA. We will then hold joint analysis sessions involving clinicians and PWE, sharing examples of best practice revealed and key themes for having good risk conversations. Best practice guidelines will be developed.
Funding for this project was secured prior to the COVID outbreak, however, we are now even more concerned that every conversation needs to include consideration of risk, as there is less contact with patients, and even greater need to ensure clarity of communication.
REC name
London - Camberwell St Giles Research Ethics Committee
REC reference
21/LO/0321
Date of REC Opinion
18 May 2021
REC opinion
Further Information Favourable Opinion