When a child gets cancer, it affects the whole family. The siblings are an important part of that. They have to deal with all kinds of situations that their peers do not have to deal with. The Princess Máxima Center considers it essential that brothers and sisters also receive the attention they deserve. Psychologist Martha Grootenhuis talks about the approach in care and research.
“A child getting cancer is one of the most stressful events that can happen to a family. At the Máxima Center, we do everything we can to cure as many children as possible. But we also want parents, brothers and sisters to stand tall,” says Prof. Dr. Martha Grootenhuis, who is conducting research at the Princess Máxima Center into the psychosocial consequences of cancer for children and families. One of the projects is “Siblings in the Spotlight”. Martha says, “That name is there for a reason. Siblings sometimes efface themselves. Their parents already have it so hard, they think. Siblings do not want to demand attention, but they do need it.” The siblings, Martha says, are also called “glass children”. If you are not careful, you might look through them, as it were.
Help for siblings
The project fits in with the Máxima Center approach, in which care and research reinforce each other. Martha says, “It's a care project where we're using scientific knowledge and learning from real-world experiences.’ The medical social workers routinely meet the family of every child with cancer, Martha says, explaining the current approach. During this introduction it becomes clear how the family is doing. This includes the question of whether there are any brothers or sisters. Martha says, “We urge parents and siblings to come forward if they need support. The medical social workers can refer them if specific help is needed. And medical education care providers also give advice and tips to siblings and parents.”
The psycho-oncology department runs a questionnaire with a new family at the start of treatment. Martha says, “We then always ask about brothers and sisters too. Research has shown that it may take some time for siblings to get into trouble. They run into questions after a while. That's why we want to come back to them later, but it's still a question of how we can incorporate this in the healthcare system. We're still too dependent on signals from parents. And we encourage nurses and doctors to ask siblings from time to time: And how are you?”
Dare to ask questions
The large LATER study that was conducted also involved siblings. Martha says, “This study gives insight into what they were dealing with when their brother or sister had cancer. And how are they doing now?” Children are resilient, and siblings can handle a lot too, Martha concludes. But sometimes they also have questions that they are afraid to ask. ‘So – as a parent and as a care provider – make it clear that there is always room to talk about things. We rightly call children with cancer heroes. But we can give their brothers and sisters that honorary title, too.”
Tips to give to parents/caregivers
- Ask your child's siblings regularly how they are doing.
- Realize that siblings can be scared too. Or, for example, that they are sometimes ashamed of being jealous of their sick brother or sister. Show clearly that whatever your child feels is okay.
- Also, check occasionally to see if siblings have questions they might be afraid to ask. Or things they do not understand. Information about the disease and answers to questions can ease a sense of uncertainty.
- Do something fun with siblings on a regular basis – together or separately – so that they get your full attention for a change.
- Do you feel that a brother or sister of your sick child needs extra attention? Please let the medical social worker (or another member of the treatment team) know.
- Do not be too hard on yourself as a parent. During the period of treatment, dividing your attention is difficult, and that is totally understandable.
Siblings in the Spotlight
At the Máxima Center, not only the child with cancer is being treated. The family – including siblings that is – also receives the attention it deserves. The Siblings in the Spotlight project, carried out by Mala Joosten, is working on improving this care. The project develops information for parents, caregivers and teachers of siblings. For brothers and sisters who want to, there are activities and (online and face-to-face) group courses. In this way, they can connect with each other and share experiences. The implementation of this care innovation program is being carried out in collaboration with the departments of Development-Oriented Care and Psycho-Oncology Care. Information, also about future activities, can be found at www.prinsesmaximacentrum.nl/brussen.
Important is the online course Op Koers, with weekly meetings within a private and secure chat box. Besides meetings for young people and parents, there is also a course for brothers and sisters between 12 and 18 years.
- De Brussenboek by Anjet van Dijken
- Information about siblings on the website of the Child and Hospital Foundation
- “The Parent Compass”, with information about the family (including siblings)
- “If your brother or sister is ill”, parenting advice from Tamar de Vos-van der Hoeven