Abstracts

Rationale: Epilepsy holds a variety of implications for the child and their family beyond seizures, including intricate and multidimensional care arrangements. Despite recognition of the importance of listening to and consulting with children regarding their healthcare, children’s accounts regarding their epilepsy and their involvement in associated care is under examined. We present data from an ongoing study exploring everyday experiences of children with active epilepsy (CWE) and their involvement in their own healthcare in formal clinical and informal home contexts.Methods: CWE (on anti-epileptic drug(s) and or has had a seizure in the last year) and their parent(s) were interviewed separately on two occasions. Semi-structured interviews were used to examine, in detail, themes associated with every day and care experiences of epilepsy. Observation of clinical consultations guided the second interview, generating more in-depth discussion. Participatory tools (e.g. spider diagrams) were used in child interviews to facilitate conversation. Interviews were recorded and transcribed; inductive thematic data analysis was conducted using NVivo. The study was approved by the South East Scotland NHS Research Ethics CommitteeResults: Twenty-three children (12 F; aged 7-14, mean 10 years) with different types of epilepsy (e.g. Childhood Absence, Frontal Lobe, and Rolandic Epilepsy) and 26 of their parents’ (20 F) from varied socioeconomic backgrounds were interviewed. Taking medication was a major aspect of epilepsy for CWE, often being considered a burden. Parent’s discussions of medication taking included emotional turmoil and complex negotiation strategies e.g. deciding not to link medication taking with mealtimes. Many CWE reported that epilepsy did not interfere with daily life, although some did have restrictions on their activities by parents due to perceived risks of epilepsy (e.g. stopping swimming lessons). CWE varied in their understanding of epilepsy which was linked to age of epilepsy onset. Parents saw themselves as gatekeepers of epilepsy information, being selective in what they told their child. CWE differed in their desire for and comfort with involvement in their care, with a number enjoying an active role. Chronological age was a major factor in how parents determined their child’s autonomy and competence of self-care. CWE and their parents have unmet support and information needs regarding the future of their epilepsy. Relationships between themes will be presented.Conclusions: Individual needs of CWE to be autonomous and or more involved in their own care should be actively considered by medical and home carers. Healthcare professionals should be sensitive to the needs of information of CWE, whilst respecting parents’ views. Healthcare professionals perceptions of risks associated with epilepsy may differ to those of parents.