Fact sheet: Advice for parents

Children with congenital heart disease are often admitted to hospital urgently and without prior warning, which greatly affects the siblings since they cannot be informed and prepared about the process by their parents. In these stressful circumstances, the parents’ attention is quite naturally focused on the ill child, and communication with the other siblings is left to one side. This list provides advice and gives ideas about what to do. 

Parents need information

Parents frequently feel that the stress and anxiety they endure at this time stops them from finding sufficient emotional peace and quiet to provide the adequate explanations and information that their other children need. However, the siblings do need to be informed.

• Parents need to make an effort to explain, because providing clear, precise information, adapted to the right level of understanding for the child is crucial in the adaptation of the siblings to the new situation.
• The illness has to be demystified, and the child helped to understand that his or her sibling's suffering is not anyone’s fault, that it is not contagious, but that it is serious and requires cooperation from everyone.
• Parents should explain to the siblings how the operation went and in what physical condition the child will return.
• Parents must make it very clear if the child is still weak and needs special attention, or if the reverse is true and the child is fully recovered and can continue with normal life.

Communication and contact are crucial

Because of the long period of time that they spend together and the ambivalent feelings that are normal during childhood, the ill child’s siblings sometimes think that the negative feelings they have for their brother or sister (when he or she receives more attention from the parents) are the reason for the situation. They might also think that they are the cause of the problem because they argued with their sibling. Therefore, it is essential that parents talk to the siblings about their feelings.

• The siblings should be encouraged to express their feelings. They should be made to see that the feelings they have (pain, jealousy, worry, fear, relief, etc) are quite normal.
• The feelings that are justified (eg. pain, sadness, worry, etc) have to be separated from those that come from fantasy or a mistaken interpretation of reality (eg. guilt, abandonment, fear of contagion, envy, etc), which are feelings that need to be eliminated.
• Spending time with other family members or friends is a great help for the siblings, but they cannot act as parent substitutes. Parents need to be aware of the importance of spending time with their other children.
• Whenever possible, parents should alternate visits: one at the hospital and the other at home. This arrangement would make a great difference for the other siblings if one of the parents were able to spend a couple of hours at home every evening.
• When the sick child has more than one sibling, the parents’ absence will very probably be a lot easier to cope with; however, even then parents should not forget that every child needs individual attention.
• Parents should talk about the child’s illness, first with each sibling and then all together. An atmosphere of complicity and support should be created between all family members.
• During the time that parents spend with the other siblings it is important that they not only talk about the sick sibling but also about the concerns of each child and the things that they enjoy, thus showing the children that time spent in their company is a pleasure.

Involving siblings helps them to accept

• Siblings should be involved in the preparations made for the child to go to hospital.
• If the ill child is offered the chance to go around the hospital or read material about the illness, the other children should be included in these activities, providing that they are a suitable age.
• Parents should disclose information, when appropriate, about the child’s progress while he or she is in hospital. A lack of information could be frightening and worrying for the siblings.
• Siblings must stick together and show solidarity during difficult times.
• Involving siblings in the conversations and activities that support the ill child will make them feel useful and help them to accept the illness.
• In many families, the siblings are obliged to take on responsibilities for which they are too young, and this may create difficulties. If parents are forced to delegate responsibilities to their children, they should maintain regular communication with them, and make their child understand that they are there to provide support should they feel overwhelmed by the situation.

Visits help to reduce fears

• Being able to visit the ill sibling in hospital will help the other siblings to see that their brother or sister is well and will help to reduce some of their fears.
• If the admitted child is old enough, he or she should be asked if the visits are enjoyable.
• The siblings should be healthy and well if they are to make a visit to hospital. If they have a cold, sore throat, or any other symptoms suggesting that they are unwell, they should be kept away from the ill child. If they have recently been in contact with someone at school or at the nursery who is unwell, they should also stay at home.
• If the admitted child has a viral or bacterial infection, or any other illness that could be transmitted to siblings, they should not be allowed to be together. In this type of situation, communication by phone, or by sending pictures or photos, is preferable to a personal visit. Involving the entire family helps everyone to adapt during what can be a very stressful period.