Background

It is crucial to engage Children and Young People with Epilepsy (CYPE), and their parents/carers about epilepsy and management. The understanding CYPE have of epilepsy, and their experiences of healthcare are not well documented. It is unclear if current ways of providing information meet needs of CYPE and their parents/carers. We explored CYPE’s experiences and understandings of epilepsy, and used obtained information to develop a novel animation.

Methods

CYPE were recruited from two epilepsy clinics in South East Scotland. CYPE and one or both of their parents were interviewed separately, twice, using semi-structured interviews. Observation of clinical consultations guided second interviews. Interviews were recorded and transcribed using NVivo; inductive thematic data analysis was conducted. From identified themes, the animation ‘Me and My Epilepsy’ was developed with participants, using their own words and experiences.

Results

23 CYPE (7-14 years), and 31 parents participated. Key findings included: (1) CYPE and their parents had unmet information and support needs. (2) Taking medication was a major issue (often considered burdensome, and not necessarily understood). (3) CYPE’s understandings of epilepsy were drawn primarily from their own experiences and parentally provided information. (4) Parents saw themselves as information gatekeepers. (5) CYPE oftenexperienced felt-stigma and frequently struggled to speak about their epilepsy.

Conclusion

Healthcare professionals need to be more attuned to CYPE’s information/support needs. More child-centred, readily accessible ways of obtaining epilepsy information are required. We propose the adjoining (3minute) animation as one innovative way to talk about and provide information on epilepsy with CYPE.