Coping with epilepsy as a family

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Siblings may receive less attention at times because the needs of a child with epilepsy take over. Helping siblings cope is an important aspect of family life as well.

Key points

  • Factors to help the entire family cope with epilepsy include parents setting an optimistic tone, sharing health-care responsibilities and making everyone feel involved.
  • Siblings may experience a range of emotions including guilt, fear, anger, jealousy and helplessness. Educating siblings about epilepsy may help them cope with their emotions.

When a child has epilepsy, it affects everyone in a family — the child, parents, siblings, grandparents. Coping well with epilepsy means not only managing seizures but managing its impact on your entire family and making the most of your day-to-day lives.

The response of siblings

It may be difficult to pay attention to the response of your other children when so much of your energy is being focused on your child with epilepsy and their needs. Siblings may feel as though their concerns are being ignored, minimized or overshadowed by the seizures. They may also want to help but not know how.

It is normal for siblings to have mixed feelings and reactions when their brother or sister has epilepsy. Sibling response to epilepsy will be different depending on their age and their understanding of seizures and epilepsy.

Siblings may receive less attention because of the overriding needs of your child with epilepsy. The specific "focus" on the child with epilepsy can cause siblings to feel isolated and left out. Parental worry and concern about the child with epilepsy can also affect siblings.

In some situations where siblings do not have the opportunity to discuss their feelings or are not old enough to express their feelings about their brother or sister’s epilepsy, they may show a change in behaviour (e.g., developing physical symptoms such as a headache or stomachache with no physiological basis or acting younger than their age). These changes can be obvious or subtle, but it is important to be aware of and address them. One key thing to do is explain to your other children what epilepsy is and how it affects their sibling, and why it requires so much of your time.

There is little information available about the effects of chronic health conditions on a child’s siblings. Some studies have found that, compared to children without chronic illness in the family, siblings of children with chronic illness are slightly more likely to experience psychosocial difficulties. These may include:

  • behaviour problems
  • lower self-esteem
  • shyness
  • poor relationships with peers
  • loneliness
  • anger
  • anxiety
  • depression
  • poor school grades

Not all studies have found these negative effects. Some research suggests that siblings are also likely to experience positive effects, such as greater compassion, over the long term.

Many siblings will want to support their brother or sister with epilepsy and may become more empathetic and caring toward them. It is also normal for some siblings to feel resentful of having less time with their parents, of being responsible for the care of their brother or sister with epilepsy or overwhelmed by worry about their brother or sister’s well-being.

Good communication and support are important for helping children adjust to their sibling’s chronic illness.

Emotional impact on siblings

The needs of siblings often get overlooked temporarily when they have a brother or sister with epilepsy in the family. Siblings may experience a range of emotions, including:

  • guilt that their brother or sister has epilepsy and they don’t
  • fear that they too may develop seizures
  • fear that their sibling’s condition may worsen
  • anger that they can’t do all the things they used to do
  • jealousy because their sibling seems to get all the attention
  • feeling helpless because they want to support their sibling but don’t know how

How to help siblings cope

A first significant step in coping is to learn about epilepsy. Take the time to educate your other children about epilepsy and the ways in which it has changed their sibling’s life. Talk about changes and adjustments that the family will need to make. Create an environment where siblings know it is acceptable to express their feelings and emotions.

Here are some specific ideas that you as a parent can do to help your other children adjust to the new situation:

  • Give your other children the opportunity to express their feelings and emotions.
  • Explore their perceptions about your child’s epilepsy. Ask them what they want to know.
  • Involve them in the new situation: let them help in the care of your child with epilepsy or take on new responsibilities.
  • Include them in discussions of the diagnosis, based on their understanding and interest.
  • Tell them what to expect in terms of the changes they will see in family life, and in their sibling.
  • Update them about their sibling’s treatment and condition.
  • Seek out sibling support groups through epilepsy organizations if you feel your other children might benefit from meeting other siblings of children with epilepsy.
  • If your other children seem to be struggling a great deal, seek help through your local epilepsy organization, the health-care team or other parents who can identify strategies to help.

Your relationship with your spouse or partner

A chronic condition such as epilepsy can also affect your relationship with your spouse or partner. For some parents, a child’s epilepsy diagnosis forces them to work more closely together as a couple, however it can also cause relationship strain.

Parenting a child with a chronic condition requires open communication between caregivers. The major responsibilities and tasks are usually divided between the parents. This division is sometimes clearly negotiated and at other times assumed. For example, in a two-parent family where one parent expects the other to take on the role of participating in all school meetings and clinic appointments, there is the potential for conflict until this issue is openly discussed and resolved.

Another challenge that couples often describe occurs when the emotional energy of one parent is focused on monitoring the child with seizures that there is little attention available for their own relationship. For some couples, this may create distance in the relationship or even resentment from one or both partners.

Single-parent families

The responsibility in single-parent families can be immense because the one parent must oversee all aspects of the child’s care, including monitoring the child’s seizures. The exclusive responsibility on one parent may increase feelings of isolation due to limited opportunities to engage with friends and extended family.

Suggestions to normalize family life

Since children often take their cues from their parents, parents’ healthy attitudes are very important in helping children adjust. If the parents are able to make epilepsy part of their daily routine, this will set a positive tone for the family. Some suggestions to normalize family life include:

  • Try to maintain typical family roles. Older siblings can help but should not take on primary caregiver roles.
  • Routines for the other children are important. For example, have a schedule so siblings know who is at the hospital and when, who is fixing dinner, and who is picking the kids up from school.
  • Schedule special "family time" together where the focus is on the whole family, not just the child with epilepsy.
  • Try to spend some time alone with your other children. Talk to them. Review their day; ask about their interests and their concerns.
  • Arrange for your children to keep up with sports or music lessons, play dates and other activities.
  • Follow the same rules for behaviour at home now as before the diagnosis.
Last updated: January 25th 2022