My epilepsy and Me: Hearing from adults with intellectual disability
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View abstract on PubMed
Summary
This summary is machine-generated.People with intellectual disability and epilepsy need better health information. Easy-read materials can improve their understanding and engagement with healthcare services.
Area Of Science
- Neurology
- Public Health
- Health Literacy
Background
- Intellectual disability and epilepsy frequently co-occur, creating significant health literacy and healthcare access challenges.
- Easy-read documents are a potential strategy to enhance health literacy and engagement for individuals with intellectual disability.
Purpose Of The Study
- To explore the experiences and opinions of individuals with co-occurring intellectual disability and epilepsy regarding epilepsy information and healthcare access.
- To investigate participant perspectives on the utility of easy-read materials in managing epilepsy.
Main Methods
- Qualitative study employing reflexive thematic analysis of interviews with individuals with intellectual disability and epilepsy.
- Exploration of participants' experiences with epilepsy, information access, and healthcare interactions.
Main Results
- Three primary themes emerged: 'Lifelines Matter' (impact of knowledge on epilepsy experience), 'Doctors are Indifferent' (perceptions of healthcare professional interactions), and 'We Want Information' (desire for more epilepsy knowledge and engagement).
- Findings highlight the critical need for accessible information and improved healthcare communication for this population.
Conclusions
- This study underscores the importance of health literacy for individuals with intellectual disability and epilepsy.
- Future research should focus on developing and evaluating easy-read materials to improve healthcare experiences and outcomes for this group.
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