Sibling Support

Introduction

Having a child with a heart condition affects all members of the family, and may have especially long-lasting effects on siblings. More often than not, apart from mum and dad, brothers and sisters spend more time with the child in the family who has special needs than anyone else. A brother or sister’s illness can create an array of conflicting emotions for siblings as not only are they concerned about their ill brother or sister, but they often resent the turmoil that the family has been thrown into. For example, they may feel jealous of the gifts and special attention their brother or sister receives, and at the same time feel guilty for having these emotions. Throughout their lives, brothers and sisters may play many different roles in the lives of their siblings who have special needs.

What to expect

It is important to remember that, just as in any family, many situations that arise around sibling relationships are part of normal everyday sibling concerns. However, having a sibling with a heart condition may also impact upon brothers and sisters in other unexpected ways and will therefore be different to those experienced by families who do not have a child with a congenital heart condition.

Fear
Many children worry that one or both parents may also get sick. This may make them feel vulnerable, and afraid. Depending on their age, some siblings may even develop symptoms of illness in an attempt to regain attention from the parents.

Jealousy
Despite feeling concern for the ill brother and sister, almost all siblings also feel jealous. Siblings may feel particularly jealous or excluded when presents and cards flood in for the sick child, Mum and Dad stay at the hospital with the sick child, and most conversations revolve around the sick child. Even when they are at home or at school, when the siblings go out to play the neighbours may ask about the sick child and at school, teachers express concern about the sick child.

Sadness
Some children show their sadness by crying often; others withdraw and become depressed. They may confide in relatives or friends that they think their parents don’t love them anymore.

Anger
Siblings’ lives are bound to be disrupted by their brother or sister’s diagnosis and this can make them feel very angry. They may ask questions such as ‘‘Why did this happen to us?” or “Why can’t things be the way they used to be?” or “Why can’t we do things together!” On these occasions siblings’ anger may be directed at their sick brother, their parents, relatives, friends or doctor.

Guilt
Beyond feeling guilt for causing the disability, most siblings feel shame for their normal emotional responses to the condition like anger and jealousy. They may need reassurance, that as with other health related problems, sometimes heart conditions just happen, and no one in the family caused it. Help your child understand that just because people think something, it doesn’t make it happen. Some children even feel guilt for being healthy. They think, “Why should I feel great when he’s so frail and sick?”

Lack of Understanding
Because sibling concerns can be compounded by their level of understanding of their brother or sister’s condition and its implications, it is important that you ensure that they are given sufficient information. Remember that their observations of your coping strategies when problems and difficulties arise will teach them more than anything about how to express their feelings and concerns and manage their emotions.

Misconceptions and Misinformation
Research indicates that siblings often do not understand or have misinformation regarding the definition and cause of their brother or sister’s disability. Additionally, it has been indicated that parents often overestimate siblings’ understanding of the implications of their brother or sister’s difficulties.

At the hospital

Encouraging siblings to visit their brother or sister in hospital will help them gain an accurate understanding of procedures. Let them know beforehand what to expect (for example, tell them how their brother or sister will look, what equipment they might see, people they might meet, sounds they might hear, etc).

Showing stress at home

The following are the most common signs that a child is under stress.

Eating changes (eating less or more than usual, or being picky about food).
Not wanting to talk or be with family members
‘Too good’ behaviour. Some children may return to behaviours that were common when they were younger, such as thumb-sucking, bed-wetting or carrying a security blanket or toy and fear of separation. These behaviours are comforting because they are familiar.
Need for a lot of hugs and attention.
Doing things to get in trouble and get attention.
Saying they feel sick too.
Behaviour or academic problems at school.
Young children often convey their fears and worries through play.

Siblings' rules

Siblings should be valued and respected for their roles in their families.
Regardless of the contributions they may make, the basic right of siblings to their own lives must always be remembered. Parents and service providers should not make assumptions about responsibilities.
As a parent, share some of your conflicting feelings. For example, share your feelings about the illness and its impact on the family. Say, “I’m sad that I have to bring your sister to the hospital a lot. I miss you when I’m gone.”
Make sure that you explain the condition and its treatment to the siblings in terms that they understand.
Create a climate of openness, so that they can ask questions and know that they will get answers. If you don’t know the answer to a question, write it on your list to ask the doctor at the next appointment, or ask your child if he would like to go to the appointment with you and ask the question himself.
If people only comment on the child with the heart condition, try to bring the conversation back to include the sibling.
Include siblings in decision making on matters such as how chores will be done, or devise a schedule for parent time with the healthy children.
Allow siblings to be involved in the medical aspects of their sister or brother’s illness, if they wish it.
Give lots of hugs and kisses.
Communicate often with the teachers, to make sure they are aware of any developing problems.
Expect siblings to have some behaviour problems as part of living with disability in the family. This is a normal response. Pay special attention to the behaviours of preschool-aged siblings, who may not have the verbal skills necessary to convey their emotions and concerns.
Provide gifts and tokens of appreciation to the siblings for helping out during hard times.
Let your children know that all of their feelings are okay. Also let them know that you are willing to answer their questions and listen to their concerns.
Whenever possible, try to maintain your family’s normal routines and rituals. This can help offset some of the disruption occuring due to illness.
Make “special time” for your well children, even if these times are brief.

Jacqueline Blyth
Clinical Psychologist
Birmingham Children’s Hospital