SIBLINGS – EPILEPSY IN THE FAMILY

“When a child has a chronic disease, it impacts the family”[1]

Epilepsy can bring about changes and put a strain on families in many ways. Everyone is affected in some way, including siblings, yet they experience it differently. The person with epilepsy will feel one way, but a sibling, parent or spouse may feel another way.[2]  The upside is that it can sometimes bring the family closer together as a unit. Here we discuss the impact on siblings when they have a brother or sister with epilepsy.

[1] http://www.health.com/news/when-sibling-has-epilepsy-kids-worry

[2] http://www.epilepsy.com/get-help/managing-your-epilepsy/living-epilepsy/living-epilepsy-101-basics/family-life

Adjusting to a diagnosis

When someone is diagnosed with epilepsy, there will be some degree of adjustment for everyone in the family. Most children adjust pretty well to having a sibling with epilepsy, but siblings of the child also have their own ongoing individual needs. They face their own challenges and may be at risk for a variety of problems themselves if they don’t get the support and recognition they need.

There are times when the parents will need to give extra attention to the child with epilepsy, and brothers and sisters may often feel neglected or overlooked. If the epilepsy is complex, severe, or seizures are poorly controlled they might also have difficulty learning to live with the stresses of having a sibling with seizures and additional needs.

Over the course of a lifetime, siblings often are the people to have the longest relationship than any other family member. Not only are they important for social and emotional support, but they themselves can be very much affected by having a brother or sister with epilepsy. Siblings can have their ups and downs just like anyone else.

Positive effects

Sometimes having a sibling with epilepsy can create positive effects. This can be in the form of increased empathy, patience, tolerance, love, social justice and advocacy. Children who have a sibling with additional needs can often be more caring and kind, sensitive and responsive to the needs of others, tolerant and compassionate, mature, appreciative of their own health, responsible, independent and empathetic.[1] They also grow to understand epilepsy and can often explain their sibling’s condition to others quite well.

Some children like having the extra responsibility that comes with having a sibling with increased health needs; they can develop an understanding and ability to communicate their sibling’s diagnosis enabling them to become a strong and informed advocate.

Feelings

“The first step is to realise that people will react differently to a diagnosis. When reactions aren’t addressed or talked about, relationships between family members can get strained.”

There can be many mixed feelings associated with having epilepsy in the family. These can change over time, or be reignited depending on the circumstances. Some common reported feelings by siblings and family members of someone with epilepsy include: [2],[3]

  • Feeling helpless or frightened seeing the seizures because
    • they can’t make them stop
    • they look frightening
    • or what could potentially happen to their brother or sister.
  • Feeling angry that
    • this is happening to someone they love
    • their lives have changed
    • they feel they don’t get the attention they used to.
  • Worry and wanting to protect the person who has epilepsy. Many siblings feel anxious for their brother or sister with epilepsy.
  • Feeling overlooked or left out.
    • They might feel that things in their lives are not as important as they used to be.
    • They might also feel the impact of their brother or sisters epilepsy is affecting their friendships or experiences at school
  • Sadness because of the changes in their life and possible sacrifices they have had to make.
  • Guilt because they sometimes feel angry or jealous towards their sibling, or because they resent having extra responsibilities.
  • Proud to have a brother or sister who is bravely dealing with epilepsy and seizures

The sibling may not understand how their brother or sister with epilepsy is feeling as  the person with epilepsy may feel quite differently. They may feel:

  • Sad, upset, angry or confused that they have epilepsy.
  • Different or left out.
  • Overprotected and want some space and independence.
  • Afraid that they are a burden to their family.

This can play out with behaviours or lead them to retreat or rebel.

[1] http://raisingchildren.net.au/articles/disabilities_sibling_feelings.html

[2] http://www.epilepsy.com/get-help/managing-your-epilepsy/living-epilepsy/living-epilepsy-101-basics/family-life

[3] https://www.stjude.org/treatment/services/support-services/child-life/support-for-siblings/how-siblings-react-to-having-a-sick-brother-or-sister.html

Impact on sibling

The impact on the sibling varies. It can depend on the family dynamics, situation, the sibling’s age, position within the family, the existing relationship with the child with epilepsy, personality and coping mechanisms.

Many brothers and sisters of children with epilepsy are more likely to worry and feel protective toward them.

“Millie’s brother often sneaks into our bedroom at night so he can check his baby sister on the monitor. When we asked him why he does this, he replied that he wants to know she is breathing.”

A recent US study found that negative feelings and emotions toward their sibling was actually uncommon. “We found very few disapproving feelings among siblings toward their brothers and sisters with epilepsy. The negative feelings they had were more internal, showing they were sad for or worried about them,” US researcher Barbara Kroner 2016

“You learn how to look after people better, like, if you meet someone else with a disability you treat them like you would anyone else.”

 “She’s my sister and I just take her out to play like I do with all my friends.”

“Now that we have our mobile phones, my sister (with epilepsy) can text me if she is walking home from school without her friends. I can then walk to meet her to make sure she is safe crossing the road.”

However, they can sometimes have strong and conflicting emotions about it. These can make siblings act differently than normal. For example, they might:

  • Become jealous of the sibling,
  • Cling to the parent more than usual,
  • Become “the good child” so as not to cause bother,
  • Demand more attention, or
  • Show less interest in normal activities.

Some siblings may internalise their feelings which can lead to depression and anxiety, while others may externalise and have behavioural outbursts or even physical complaints themselves.

“His brother now has severe anxiety and mental health issues of his own, understandable when he has watched me administer emergency medication and perform CPR during seizures.”

“I feel scared and sad as he has to go to hospital everytime he has a seizure. He needs tubes down his throat and has to have needles.”

What Parents Can Do:

  • Have an open discussion with all of their other children about epilepsy and how it affects their sibling. Discuss issues like:
    • Safety and why increased levels of supervision are needed.
    • What medical appointments and tests are required and why.
    • Feelings and encourage your child to share thoughts and feelings.
    • Seizure first aid and give the siblings a role or job to do. This maybe staying close to hold the phone or going to look out of the window for an ambulance. In addition to giving the sibling something to focus on this can reduce feelings of anxiety and helplessness and increase feelings of worth and control.

“Following the seizure when my husband went to find Sam’s sister so they could follow the ambulance to the hospital he could not find her – she was crouched in the wardrobe – petrified”…

  • Keep them well informed about their sibling and answer questions as they arise or if changes happen.
  • Keep the communication open. Children need to have honest information and to have their questions listened to and answered.

“Will he grow out of his seizures and be able to do the things I do one day?”

  • Encourage and facilitate all members of the family to say how they are feeling, both positive and negative. Acknowledge these feelings, reassure them it is normal to this way
  • Try to spend quality time alone with your other children. Be aware that while attending to the needs of your child with additional needs, you may be unknowingly overlooking – or creating unfair expectations of your other children. At times, siblings may feel invisible unless they demand attention. However, siblings can learn to take part in the family and feel pride and love in helping their brother or sister.
    • While you may have less time to spend with the other children in your family, you need to let them know that they are still special and important. You can’t just assume that they know this.  If you can carve out just 10-15 minutes a day to really focus on each sibling, it will go a long way.
  • Source support groups for siblings with chronic disease or epilepsy and encourage joining or participation in group events.
  • Seek professional help, such as a psychologist, for the sibling if you or the your child feels it will benefit

“Since receiving the colouring book about epilepsy Jake understands epilepsy much better. He has told other family members what happens and what to do should Luke have a seizure. Jake is less afraid to be around Luke now and is sleeping better with less nightmares.”

Signs siblings may be having trouble adjusting or coping:

Warning signs the siblings of your child with epilepsy may need some extra attention:

  • Acting out in ways to get attention
  • Looking for attention outside the home
  • Withdrawn
  • Anxious, depressed
    • Losing interest in activities that they once enjoyed
    • Losing interest in friends or play
    • Stomach aches or headaches
    • Sleep problems
  • Angry, rebellious
  • Doing worse at school
  • Pushing too hard to achieve, perfectionism
  • Social difficulties

If you are concerned, ask your child’s doctor for help. He or she can guide you to local psychologists, social workers, family therapists, and/or support groups for siblings of children with chronic disease or disabilities. You should not expect to solve these concerns by yourself, there is support available.

Why siblings can be overlooked

  • They may not appear to have obvious needs
  • Parents are often stretched for time and energy
  • There are few services available specifically for siblings
  • Government does not seem to recognise the needs of this group, nor provide adequate funding for services
  • There is limited data on the impact of having a sibling with epilepsy

What siblings need [1]

  • Honest, open communication about epilepsy and its implications
    • Provide opportunities to talk about their feelings and strategies to deal with them
    • Acknowledge the difficulties they may also face
  • Quality time with parents
  • Opportunities to have fun as a family
  • Strategies to deal with difficult situations such as seizures in public and the reactions of others
  • Acknowledgment of their support and achievements
  • Other strong connections and social support through
    • Peers
    • Teachers
    • Other siblings
  • Help with independence and future plans

Be aware of the signs that the sibling may be struggling and seek professional help if needed (such as withdrawing, sleep disturbances, avoiding the sibling, significant behaviour changes)

“The first Joshua knew about his sister’s seizure was when a friend told him she had gone off in an ambulance. Understandably he was angry with the teachers that he was not told. I get that they are trying to protect him and he shouldn’t feel responsible for Mia but he needs to be informed.”

[1] http://www.pennsw.com.au/coping-with-epilepsy/talking-to-siblings.html

Developing resilience:

Resilience is somewhat of a buzz word these days but it can certainly help children cope and manage stress and change better. Essentially resilience is the ability to adapt effectively to adversity and to bounce back from difficult circumstances.  It is determined by a number of biological and environmental factors, and some people are naturally more resilient than others. [1] Resilience is one explanation for why some children experience trauma and adapt with relative ease, while others struggle under similar circumstances.[2]  Resilience can be worked on, learnt and improved.

Building resilience is about developing social and emotional skills including coping skills, which overall helps to deal with stress. When teaching these skills (such as understanding and managing emotions, getting along with friends, making good decisions), it can be useful to draw on some of the actual stressors that children are facing in their life. This way, they can learn practical skills to use in the real world. It’s also important not to ignore the basics like sleeping and eating well.

[1] http://www.kidsmatter.edu.au/health-and-community/enewsletter/building-resilience-cope-stress

[2] StudentsFIRSTProject.org http://studentsfirstproject.org/childadolescent-mental-health/promoting-mental-health/promoting-resiliency/

People are born with an innate personality, and some siblings get along better and are closer than others. There is no right way or wrong way for siblings to live and grow together; rather, every family should strive for its own balance and determine what strategies and supports help the child with epilepsy and siblings to thrive and be strong enough to get through the tough times.

It is still important to maintain family rules. Children need boundaries and these should be kept consistent for all the family. You may feel guilty enforcing some rules, but structure helps children to know what to expect and helps them feel less anxious and safe.

Ideally it would be good to build internal strengths and coping skills in all members of your family. Many aspects will influence this process, including how the epilepsy progresses, and the external and internal supports you have.

While most families with epilepsy, chronic disease or disabilities struggle through times of fear and despair, many also develop an internal resilience, creativity, and a closeness or cohesiveness that helps the children with and without epilepsy and rest of the family to manage and cope together with the many stressors that may develop over time. Often as a result of these experiences, adults and children can learn about their strengths and limitations, talk more openly, and learn new ways to solve problems which fosters a sense of control and pride.

Supporting your other children

Children need to feel that they matter as much as their siblings with epilepsy. Sometimes they need support to cope with their feelings, and to spend time with you and find ways to connect with people outside the family. For more information about supporting your child who doesn’t have epilepsy go to http://raisingchildren.net.au/articles/disabilities_helping_siblings.html

  1. Continue to reassess the needs and goals for your child with epilepsy, their siblings, and your family.
  2. Be willing to learn new skills, search for supports and make changes as needed that serve everyone in the family as they arise.
  3. As much as possible, involve all of your children in shared decision making about any health care that affects them.
  4. Stay informed and give yourself credit for all the hard work you and your family have done and the resiliency you have developed in your family.

 

Summary

Our childhood experiences and relationships with siblings influence our behaviours and personalities as adults. At best, siblings are the most understanding and supportive of confidants, providing the stability of family with the camaraderie of a friend. At worst, they are antagonistic, competitive, jealous, guilt-ridden, and overly demanding of parental attention. Of course, every sibling relationship has both these best and worst scenario, as do all relationships. The best anyone can hope for is a sibling relationship that balances healthily in the centre. [1]

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 as parents.  Although it can be difficult for parents to manage all the competing needs whilst trying to adjust themselves, they must be mindful of the needs of siblings to provide the support that they need to cope with their feelings and special circumstances.

Some people find it helpful to seek professional guidance through a counsellor while others benefit from communicating to people inside and outside of the family.

 

Support services

Siblings Australia http://siblingsaustralia.org.au

Interchange http://www.interchange.org.au  provide family respite and social opportunities for children and young people with a disability through a variety of programs.

Carers Australia http://www.carersaustralia.com.au

Young Carers http://www.youngcarers.net.au/

Headspace https://www.headspace.org.au/ is the National Youth Mental Health Foundation providing early intervention mental health services to 12-25 year olds, along with assistance in promoting young peoples’ wellbeing.

MyTime http://www.mytime.net.au/  Supporting parents and children with disabilities. You can find a group close to you.

 

References and additional Information:

Raising Children Network – About siblings of children with disability http://raisingchildren.net.au/articles/disabilities_sibling_feelings.html  includes a video of parents and siblings discussing the impact on their lives and how they feel

Siblings of Children with Chronic Illness or Disabilities https://www.healthychildren.org/English/health-issues/conditions/chronic/Pages/Siblings-of-Children-with-Chronic-Ilnesses.aspx

The impact of chronic illness on siblings http://nurse-practitioners-and-physician-assistants.advanceweb.com/Features/Articles/The-Impact-of-Chronic-Illness-on-Siblings.aspx

Caring for someone with chronic illness. https://www.carergateway.gov.au/caring-for-someone-with-a-chronic-illness

What about us? Siblings of children with epilepsy. http://www.sciencedirect.com/science/article/pii/S1059131106001658

Siblings and epilepsy http://epilepsyontario.org/wp-content/uploads/2011/10/Sharing-Spring-2010.pdf

Children with chronic conditions. http://www.med.umich.edu/yourchild/topics/chronic.htm

Kate Strohm from Siblings Australia, for information provided

[1] Epilepsy Ontario 2010