Talking to Siblings about Epilepsy
Having a child with epilepsy often places additional demands on parents, both emotionally and practically. Siblings of children with epilepsy are similarly affected and have to undergo the same process of adjustment to the diagnosis as parents. Parents, therefore, must be mindful of the needs of siblings to provide the support that they need to cope with their feelings and special circumstances. It can be difficult for parents to manage all the competing needs whilst trying to adjust themselves. Seeking support and assistance for yourself when needed will benefit the whole family.
It can be difficult for siblings, but most siblings of a child with extra needs will make a good adjustment. Most will be able to describe stressful feelings as well as positive aspects of their experience.
Siblings commonly experience:
- Worry about their brother or sister.
- Worry about the parents.
- Worry about the future.
- Fear of getting the condition.
- Confusion about the condition.
- Isolation and feeling of being left out.
- Anger and resentment.
- Pressure to be good, helpful, successful.
- Sense of responsibility for looking after the sibling.
When parents are aware of the actual impact of the epilepsy on other children, additional assistance can be mobilised to help the siblings.
The following suggestions are important in responding to the needs of siblings:
- Open, honest communication about the diagnosis and its implications.
- Provide opportunities to talk about their feelings and strategies for dealing with them - listen to the sibling, encourage questions and be available to answer questions and talk about feelings.
- Provide information in a developmentally and cognitively appropriate way.
- Provide strategies to deal with difficult situations (e.g. embarrassing behaviours, reactions of others, seizures, etc.)
- Facilitate peer support and links with other siblings of a child with special needs.
- Ensure social support (e.g. connections with other family, adults, schools, peers, etc.)
- Create opportunities for individual quality time for the sibling with the parents.
- Acknowledge and celebrate the sibling’s special qualities and achievements.
- Acknowledge the challenges faced by the sibling.
- Facilitate opportunities for positive interactions between the child with epilepsy and their sibling.
- Lead by example (e.g. share feelings, pay attention to self-care, etc.)
- Be aware of the signs that the sibling may be struggling and seek professional advice (e.g. withdrawing, sleep disturbances, avoiding sibling, significant behaviour changes, etc.)
The information provided on this page has been written by members of the PENNSW Website Editorial Committee.
This page was created in March 2012 and last reviewed on October 13th 2014.