“Sometimes, it just stops me from doing anything”: A qualitative exploration of \ud epilepsy management in people with intellectual disabilities and their carers

Purpose: Epilepsy affects 1 in 5 people with an intellectual disability (ID) but little is known about their experiences of\ud living with epilepsy. A qualitative study was conducted to investigate the impact and management of epilepsy in\ud people with ID. Materials and Methods: People with epilepsy and ID and their carers were invited to take part in semistructured\ud interviews. Eleven participants with ID and their carers were interviewed together, one participant with ID\ud and their carer were interviewed separately, two interviews took place with the participant with ID only and one\ud interview took place with the carer only. The interviews were transcribed verbatim, coded, and analysed thematically\ud (dual independent coding for 30% of the transcripts). Results: Three themes emerged (participant characteristics,\ud living with epilepsy, epilepsy management and information needs) which indicated: 1) diversity regarding health\ud profiles, communication abilities, severity of epilepsy, perceived control of epilepsy and support needs, 2) a reduction\ud in severity and frequency of seizures for a sizeable proportion of participants through anti-epileptic drugs, 3) the lifelong\ud impact of epilepsy and related seizures on participants’ activities and quality of life, 4) the perceived burden of\ud epilepsy and difficulty managing the condition for a large proportion of participants, 5) high levels of satisfaction with\ud epilepsy-related services and care, 6) an overall lack of written accessible information about epilepsy. Conclusions:\ud This study has highlighted a significant impact of epilepsy and related seizures on the daily lives and quality of life of\ud people with ID. Although a sizeable proportion of participants and their carers considered their epilepsy to be wellcontrolled,\ud the majority reported difficulties managing epilepsy and minimising its impact on their well-being. Excluding\ud care staff and the support provided by epilepsy clinics, the participants had not accessed any adapted selfmanagement\ud or information resources about epilepsy