Self-management in people with epilepsy and intellectual disabilities: Unmet needs and the feasibility of a picture booklet intervention

Aims: As part of the WIELD feasibility study of a picture booklet for epilepsy in people with intellectual disability (ID), a nested qualitative study was conducted. The aims were to investigate the impact of epilepsy on people with ID, use of epilepsy information in this group, and views on the acceptability and feasibility of the picture booklet.

Methods: Fifteen patients with epilepsy and ID from the WIELD study and/or their carers took part in semi-structured interviews. These were transcribed verbatim, coded, and analysed thematically (dual independent coding for 30% of the transcripts).

Results: Patients and carers were largely accepting of epilepsy although they acknowledged that self-management could be difficult and had significant impacts on their lives. Few patients had received accessible information about epilepsy. The use of the picture booklet intervention and the conversations it prompted were perceived to be beneficial, particularly for people with poorly-controlled epilepsy or who were newly diagnosed.

Conclusions: People with epilepsy and ID experience significant impacts on their quality of life and have unmet self-management needs, which could be addressed by the picture booklet intervention.