Subcutaneous electroencephalography monitoring for people with epilepsy and intellectual disability: co-production...

Nearly 25% of people with intellectual disability (PwID) have epilepsy compared to 1% of the UK general population. PwID are commonly excluded from research, eventually affecting their care. Understanding seizures in PwID is particularly challenging because of reliance on subjective external observation and poor objective validation. Remote electroencephalography (EEG) monitoring could capture objective data, but particular challenges and implementation strategies for this population need to be understood.

This co-production aimed to explore the accessibility and potential impact of a remote, long-term EEG tool (UnEEG 24/7 SubQ) for PwID and epilepsy.

We conducted six, 2-hour long workshops; three with people with mild intellectual disability and three with families/carers of people with moderate-profound intellectual disability. Brief presentations, easy read information and model demonstrations were used to explain the problem and device. A semi-structured guide developed by a communication specialist and art-based techniques facilitated discussion with PwID. For family/carers, active listening was employed. All conversations were recorded and transcribed. Artificial intelligence-based coding and thematic analysis (ATLAS.ti and ChatGPT) were synthesised with manual theming to generate insights.

Co-production included four PwID, five family members and seven care professionals. Three main themes were identified: (1) perceived benefits for improving seizure understanding, informing care and reducing family and carer responsibility to accurately identify seizures; (2) the device was feasible for some PwID but not all; and (3) appropriate person-centred communication is essential for all stakeholders to reduce concerns.

The workshops identified key benefits and implementing barriers to SubQ in PwID.