A striking bed will be placed in the hall. ‘I want to lie there for a while,’ you hear people say. Of course, jokes are made about this, but practical advice for a good night's sleep is also exchanged. Everyone knows how they felt after a bad night sleep: tired, grumpy and not very alert. But what if a child with cancer is sleeping badly and (thus) so are the parents? Today on World Sleep Day extra attention is paid to good sleep and what the Máxima Center offers in this area to children with cancer.
Sleep Care Path
Last summer, the Sleep Care Path was established. This involves several steps to analyze and treat sleep problems in children with cancer. The pediatric oncologist, psychologist or nursing specialist identifies, advises and monitors the outcomes of sleep problems. Raphaële van Litsenburg, pediatric oncology fellow with focus area on sleep: 'Colleagues can refer to me, as a sleep specialist in the Máxima Center. A multidisciplinary meeting takes place once a month where colleagues can bring in a complicated case. Sigrid Pillen, pediatric neurologist and somnologist (sleep expert) from SEIN, the expertise center for epilepsy and sleep medicine, attends. Such a consultation obviously helps the individual child with sleep problems but also further enhances the sleep expertise in the Máxima Center. With highly complex sleep problems, a child can be referred to Sigrid's consultation hour.'
'Sleeping problems often involve an interaction between psychological and medical causes,' says Sigrid Pillen. 'It's related to stress management and maintaining healthy sleep for everyone, both children and parents. More than half of children with cancer experience (temporary) sleeping problems, but in about 18% of children this is so serious that we speak of a sleep disorder, for example a damage to the biological clock or a shifted sleep rhythm. I try to discover the cause with a good analysis of the situation and the child, which is often quite a puzzle. And a profession in its own right.’
Raphaële van Litsenburg says: 'No fewer than 38 Máxima colleagues have been following Sigrid Pillen's 'Sleep in Pediatric Oncology' course since last summer and were enthusiastic. Participants included pediatric oncologists, rehabilitation doctors, psychologists, nursing specialists and physiotherapists. The course provided deepening on the cause and treatment of sleep problems and case histories were discussed. The expertise Sigrid brings with her is of great value to the care we want to provide.'
To further improve sleep care, the guideline 'Acute sleep problems' was recently published on iMaxima. Raphaële: 'This helps colleagues to tackle short-term sleep problems. This is supported from psychosocial care and supportive care: nutrition, exercise, but also sleep are aspects of care that can make a difference to the quality of life of children with cancer. We are currently working on a treatment guideline for chronic sleep problems.'