Living with a brother or sister with epilepsy: Siblings’ experiences

BACKGROUND AND PURPOSE There is conflicting evidence about the impact of disability upon siblings, and very little research on the siblings of children with epilepsy. There is some evidence that siblings who have less accurate information exhibit more distress. The aim of this study was to assess siblings' response to having a brother or sister with epilepsy and to begin to develop information for them. METHODS Parents of children attending paediatric neurology outpatient departments were invited to participate in a pilot study. Parents who consented to take part were asked if they had previously received information for siblings. Parents and siblings participated in a semi-structured interview and siblings were also invited to submit a personal account of living with a brother or sister who had epilepsy. RESULTS Twenty-five families with a child with epilepsy aged 2.5-15 years initially agreed to take part. None of the families stated that they had ever seen or received any information specifically for siblings. Fourteen siblings from the 25 families, aged 8-25 years, provided a personal account of what it was like living with a brother or sister with epilepsy. Siblings' accounts included both negative and positive feelings, and specifically feelings of care and love for their sibling. CONCLUSION This initial study suggests that siblings of children with epilepsy have many positive but also early negative feelings. The results are limited by the size of the study, the fact that most siblings were older sisters, and the mean time since diagnosis was 6 years. Finally, it is hoped that the personal accounts collected in this study will be published for the benefit of other siblings of children with epilepsy.