Children as relatives: Being siblings

Anne A Berglund (© Vegard Løvås/FFHB)

What is life like growing up with a brother or a sister who has a functional impairment or a chronic disease? How do siblings of children with heart defects fare within the family, in their immediate environment, and among friends? What do siblings do for each other? Do they have more tasks and greater responsibilities than children with healthy siblings do?

There are many such questions, and answers are not always simple. Here we interview a trained nurse for children with congenital heart defects at Oslo University Hospital, Norway.

Dramatic situation

"When a child is affected by disease, it has a substantial effect on the parents, siblings, and the child  – if they are old enough to grasp the situation," says clinical nurse supervisor Anne A Berglund at the Oslo University Hospital, Norway. She has many years of experience dealing with the families of paediatric heart patients.

Feel forgotten

"Healthy siblings can easily feel forgotten by their parents during tough times when the sick child requires a great deal of attention. In such chaotic and possibly life-and-death situations, they are often left with grandparents or other relatives while the mother and father shuttle back and forth to the hospital. “Although little can be done, the parents need to remember that the siblings also need to be close to their parents and to their brother or sister," says Berglund.

Must be included

Experience shows that siblings need to be included – e.g. at hospital visits, when their sister or brother is being given medication or fed through a tube. "Siblings should be kept informed in an age-appropriate manner, so that they understand what is going on. That provides a sense of security and, most importantly, a feeling that they are also being taken into account."

Become "sick" themselves

Attention will unavoidably be focused mainly on the sick child for many and lengthy periods, with the result that the siblings might feel that they are being overlooked. Family life often gets turned upside down overnight. Will my little brother survive? Why is my mother never at home anymore? “Everyday life is affected by unanswered questions and major uncertainties," says Berglund. There will periodically be occasions when little time or energy will be left over for the other children in the family. "In the most extreme cases, we have seen siblings become ‘sick’ themselves to receive their share of the attention. Both parents and staff need to be aware of this occurrence. Openness and communication are absolutely essential," stresses Berglund.

Not only negative

However, being the sister or brother of a child with a congenital heart defect also has many positive aspects. "Many children develop both understanding and empathy to a far greater extent than their age-group peers do. The positive aspects should be the focus, as well as the challenges that they experience in their everyday lives," says Berglund. "Most parents of children with a chronic illness deal with the treatment of their child and their family situation admirably. They manage to balance giving the disease the necessary attention in terms of protecting the child's safety and security without being overprotective parents. Both the child and siblings are thus able to develop healthily."