«It helps children to know they can talk to those closest to them about anything»
Interview with Kerstin Westhoff, Oncopsychologist at the University Children’s Hospital Basel
Ms Westhoff, when a child is diagnosed with cancer, it always affects the whole family. What does the illness mean for the parents and healthy siblings?
The diagnosis means an abrupt change to the life of everyone in the family: parents inevitably have to spend the majority of their time simply caring for the sick child and organising therapy and hospital stays. The organisation involved in this elaborate daily routine and sudden health problems of the sick child repeatedly put parents in a difficult situation, drastically reducing the time and attention they have for the healthy child – something they often feel extremely guilty about. It is often the case that healthy siblings are more or less expected to show understanding and adapt to the situation for a while. However, the changes in everyday life can be so great that the burden on the siblings – depending on the diagnosis, course of treatment, age and family resources – can be very high. Parents, on the other hand, naturally want to protect their child, not put him or her through too much and may therefore be reluctant to provide information. However, children should not be left to deal with their fantasies and worries by themselves. Information is helpful and also provides security in such a distressing situation. Above all, children want to be taken seriously and also have the opportunity to make a contribution in this difficult situation, to help the sick sibling and thus not feel isolated and excluded.
Cancer therapy in a child often takes a year and usually longer. How do siblings react to this extreme stress situation?
Siblings often say that, looking back, they felt unimportant, neglected and less loved from the time the diagnosis was received, as their parents hardly had any time left for them. In order not to put additional stress on their parents, siblings tend to hold back their own feelings while they struggle internally with themselves and the difficult situation*. This can lead to emotional outbursts or physical symptoms – often surprisingly for outsiders. The spectrum of feelings and reactions is wide and is often like being on a roller coaster. So whereas they love and want to care for their sick brother or sister, siblings may also feel guilt, envy, fear or anger and, of course, a lot of sadness. Parents are often shocked if a sibling suddenly starts being aggressive or is envious of the sick child. However, siblings frequently have to make great sacrifices, often have to be considerate and in some situations can’t be as free in their behaviour as they would like to be or are used to. Often they keep things they are worried about to themselves for a very long time. That is why it is important to communicate openly within the family so everyone has the opportunity to let people know when things are getting too much for them. Sensitive conversations in which parents take time for the sibling are a great help. In some cases, however, coming to terms with such a drastic experience requires a long time as well as professional care. This is why we at UKBB, the University Children’s Hospital Basel, offer psycho-oncological support** for both siblings and parents.
What are the major challenges for the affected families?
Children’s needs and wishes, but also conflict issues continue to exist in the family – alongside the dominant topic of the serious illness of a child. They do not suddenly dissolve or disappear when one child is seriously ill. Healthy siblings still want to be allowed to go to another child’s birthday party, attend a school camp or go out with their peers. Constantly having to take a sick brother or sister into consideration would put a strain on family relationships and ultimately lead to a great deal of stress for the healthy child. However, it is also important that siblings are not expected to continue living as if nothing had happened – they too have the “right to a crisis”. The grown-ups have to accept that they might not feel like talking, get angry more quickly or are sad and sometimes need more attention and care. It helps children to know they can talk to those closest to them about anything – that there are no topics that are off limits – but also that they don’t have to talk if they don’t want to. Of course they can stay silent and the adults then have to accept that a child might not want to talk about their sick brother or sister all the time. The family’s handling of the child’s illness and treatment is a constant balancing act between normality and the exceptional circumstances of having a child with a life-threatening disease. It is this balancing act between extremes that is one of the major challenges for all families.
How can parents support a healthy sibling?
Basically, if the changes and difficulties in everyday life, and also the illness itself, are not talked about openly within the family, there is more of a danger that healthy siblings will start imagining wild scenarios about the diagnosis, feelings of guilt, fear or even anger and jealousy. Some children become “quiet” and withdraw. The family or teachers at school might not even notice until a very late stage just how burdened and under stress a child feels. Parents should therefore answer their children’s questions as openly as possible, but also not explain more than they actually want to know. If children get no answers or only evasive ones, they sense that parents don’t particularly want to be asked questions. It is important that parents consciously take time for the healthy siblings and make it possible for them to have their own social life. But parents also need time out now and again because exhausted parents are no use to anyone. Parents should be able to take time to “recharge their batteries” and the world around them should accept that.
Nowadays four out of five children survive cancer, but every fifth one dies. How do siblings deal with the loss and what can help them cope?
The demands on parents who are having to mourn the loss of a child and on the surviving siblings are immense. It takes a long time, and in some cases also professional support, until the grief becomes part of their lives. But adults can have a positive influence on children’s grief by comforting them and offering them compassion. However, if parents are so afraid of suffering a further loss and thus try to overprotect their healthy child or start to dictate what the child can and cannot do or restrict his or her activities, the child is given the impression that life itself is dangerous, thus increasing their insecurity and fear. If children feel excluded from their parents’ grief, develop feelings of guilt or if, for example, idealisations or family taboos start to develop, living grief is made impossible. It is important that parents face their own grief and – as in other areas of life – continue to be role models for their children, thus providing them with support, protection and security.
* Source: * Research study by Di Gallo, A.; Juen F.; Guggemoos, A.; Engelmann, L.; Diesselhorst, V.; Wie Geschwister krebskranker Kinder die Erkrankung erleben und verarbeiten (How siblings of children with cancer experience and cope with the disease – a publication in German). (2013) Praxis der Kinderpsychologie und Kinderpsychiatrie (Child Psychology and Child Psychiatry Practice) 62(7):491-504.
** At the University Children’s Hospital Basel (UKBB), those affected and their relatives are given targeted support to cope with the changed life situation. This includes seamless and low-threshold psychological support on the children’s cancer ward. This psycho-oncological care is co-financed by the "Stiftung für krebskranke Kinder, Regio Basiliensis".