Subcutaneous electroencephalography monitoring for people with epilepsy and intellectual disability: co-production workshops
Background 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 exter...
Saved in:
| Main Authors: | , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Cambridge University Press
2025-01-01
|
| Series: | BJPsych Open |
| Subjects: | |
| Online Access: | https://www.cambridge.org/core/product/identifier/S2056472424008251/type/journal_article |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1850062883996565504 |
|---|---|
| author | Edward Meinert Madison Milne-Ives Jennifer Sawyer Liz Boardman Sarah Mitchell Brendan Mclean Mark Richardson Rohit Shankar |
| author_facet | Edward Meinert Madison Milne-Ives Jennifer Sawyer Liz Boardman Sarah Mitchell Brendan Mclean Mark Richardson Rohit Shankar |
| author_sort | Edward Meinert |
| collection | DOAJ |
| description | Background
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.
Aim
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.
Method
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.
Results
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.
Conclusions
The workshops identified key benefits and implementing barriers to SubQ in PwID.
|
| format | Article |
| id | doaj-art-941d30eff8a44fb5965da2dd4aad85aa |
| institution | DOAJ |
| issn | 2056-4724 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | Cambridge University Press |
| record_format | Article |
| series | BJPsych Open |
| spelling | doaj-art-941d30eff8a44fb5965da2dd4aad85aa2025-08-20T02:49:49ZengCambridge University PressBJPsych Open2056-47242025-01-011110.1192/bjo.2024.825Subcutaneous electroencephalography monitoring for people with epilepsy and intellectual disability: co-production workshopsEdward Meinert0Madison Milne-Ives1https://orcid.org/0000-0001-7628-882XJennifer Sawyer2Liz Boardman3Sarah Mitchell4Brendan Mclean5Mark Richardson6Rohit Shankar7https://orcid.org/0000-0002-1183-6933Translational and Clinical Research Institute, Newcastle University, Newcastle upon Tyne, UK; and Department of Primary Care and Public Health, School of Public Health, Imperial College London, London, UKTranslational and Clinical Research Institute, Newcastle University, Newcastle upon Tyne, UK; and Centre for Health Technology, School of Nursing and Midwifery, University of Plymouth, Plymouth, UKPlymouth Dental School, Faculty of Health, University of Plymouth, Plymouth, UKCornwall Intellectual Disability Equitable Research (CIDER), Cornwall Partnership NHS Foundation Trust, Bodmin, UKCornwall Intellectual Disability Equitable Research (CIDER), Cornwall Partnership NHS Foundation Trust, Bodmin, UK; and Peninsula Medical School, Faculty of Health, University of Plymouth, Plymouth, UKPeninsula Medical School, Faculty of Health, University of Plymouth, Plymouth, UK; and Department of Neurology, Royal Cornwall Hospitals NHS Trust, Treliske, UKDepartment of Basic and Clinical Neuroscience, Institute of Psychiatry Psychology and Neuroscience, King's College London, London, UKCornwall Intellectual Disability Equitable Research (CIDER), Cornwall Partnership NHS Foundation Trust, Bodmin, UK; and Peninsula Medical School, Faculty of Health, University of Plymouth, Plymouth, UKBackground 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. Aim 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. Method 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. Results 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. Conclusions The workshops identified key benefits and implementing barriers to SubQ in PwID. https://www.cambridge.org/core/product/identifier/S2056472424008251/type/journal_articleIntellectual disabilityepilepsyelectroencephalographyco-productionpatient and public involvement |
| spellingShingle | Edward Meinert Madison Milne-Ives Jennifer Sawyer Liz Boardman Sarah Mitchell Brendan Mclean Mark Richardson Rohit Shankar Subcutaneous electroencephalography monitoring for people with epilepsy and intellectual disability: co-production workshops BJPsych Open Intellectual disability epilepsy electroencephalography co-production patient and public involvement |
| title | Subcutaneous electroencephalography monitoring for people with epilepsy and intellectual disability: co-production workshops |
| title_full | Subcutaneous electroencephalography monitoring for people with epilepsy and intellectual disability: co-production workshops |
| title_fullStr | Subcutaneous electroencephalography monitoring for people with epilepsy and intellectual disability: co-production workshops |
| title_full_unstemmed | Subcutaneous electroencephalography monitoring for people with epilepsy and intellectual disability: co-production workshops |
| title_short | Subcutaneous electroencephalography monitoring for people with epilepsy and intellectual disability: co-production workshops |
| title_sort | subcutaneous electroencephalography monitoring for people with epilepsy and intellectual disability co production workshops |
| topic | Intellectual disability epilepsy electroencephalography co-production patient and public involvement |
| url | https://www.cambridge.org/core/product/identifier/S2056472424008251/type/journal_article |
| work_keys_str_mv | AT edwardmeinert subcutaneouselectroencephalographymonitoringforpeoplewithepilepsyandintellectualdisabilitycoproductionworkshops AT madisonmilneives subcutaneouselectroencephalographymonitoringforpeoplewithepilepsyandintellectualdisabilitycoproductionworkshops AT jennifersawyer subcutaneouselectroencephalographymonitoringforpeoplewithepilepsyandintellectualdisabilitycoproductionworkshops AT lizboardman subcutaneouselectroencephalographymonitoringforpeoplewithepilepsyandintellectualdisabilitycoproductionworkshops AT sarahmitchell subcutaneouselectroencephalographymonitoringforpeoplewithepilepsyandintellectualdisabilitycoproductionworkshops AT brendanmclean subcutaneouselectroencephalographymonitoringforpeoplewithepilepsyandintellectualdisabilitycoproductionworkshops AT markrichardson subcutaneouselectroencephalographymonitoringforpeoplewithepilepsyandintellectualdisabilitycoproductionworkshops AT rohitshankar subcutaneouselectroencephalographymonitoringforpeoplewithepilepsyandintellectualdisabilitycoproductionworkshops |