“Whether integration at school succeeds is chance”
Interview with Barbara Kohler, specialist psychologist
Barbara Kohler is a specialist psychologist in neuropsychology at Bern University Hospital. She mentors children and adolescents during and after cancer. Paediatric neuropsychology deals with the connection between brain functions, cognitive abilities, emotions and the behaviour of children and adolescents.
Ms Kohler, as a neuropsychologist you also deal with children and adolescents with cancer in your daily hospital routine. What does your work entail and why does it also play an important role for children with tumours?
We see young patients with a whole range of illnesses, such as epilepsy, and those who are acutely ill with cancer or have already received successful medical treatment but are suffering from late effects. Although many children and adolescents develop normally after cancer, the disease and the intensive therapy can lead to mild to, on occasions, severe disorders of certain brain functions. The latter mainly affect children with brain tumours, but patients with other forms of cancer may also experience an impairment of mental performance. Neurocognitive late effects can affect concentration, memory, processing speed, the planning and organisation of actions, learning, intelligence and also behaviour. When someone has been through childhood cancer, they may find that their working memory in particular has limitations. The unfortunate thing is that this is where information is stored and processed in the short term, and that is why this brain function is of central importance for academic skills such as reading and mental arithmetic. Many acute and former childhood cancer patients are also chronically exhausted and therefore need repeated periods of rest to recover and recharge their batteries. All this can lead to the affected children having more difficulty in everyday school life with tasks that require complex cognitive functions and them therefore needing more time and support.
Cancer is life-threatening and requires intensive therapy which involves children and adolescents being treated in hospital for months or even years. How do you ensure that the child does not get too far behind at school?
As a rule, all children’s hospitals work in a multidisciplinary way. This means that the psychological team, social work and the hospital school are involved right at the beginning of the medical diagnosis. In our hospital, every patient is given a neurocognitive assessment in the first few weeks and integrated into the hospital school as quickly as possible. There are classes for every year group and these take therapy plans into consideration as well as how the children feel in general. If the children are too weak to go to the lessons, our hospital educators go to see the patients in their rooms. This often takes their mind off their fears and pain, and is a good way of balancing out their situation. Generally, the hospital school contacts the regular school, providing the parents are in agreement, clarifies the current situation if necessary and requests teaching materials so that the patient does not lose touch. Some teachers are very committed, come to the hospital and motivate their class to participate, while others do hardly anything at all, for whatever reason. It is our job to maintain contact with the respective school, to provide explanations and mediate when problems arise.
What kind of support do the schools provide?
In the initial phase of the illness, most schools show great willingness to support the children in hospital. But unfortunately the longer the illness and the associated absences last and the weaker the bond between the child, the teachers and the class becomes, the more the support diminishes. Therapy for leukaemia, for example, takes an average of two years. During this time, classes continue, the grade level changes and new teachers arrive. In most cases, they know neither the history of the illness nor the arrangements made with the hospital school and, understandably, have no personal connection to the child concerned. Then we have to start from square one again to find solutions, together with the school, to make sure the child doesn’t get lost off. This is a laborious process for everyone involved and does not always have the desired effect. Although in Switzerland every child has a right to education, the reality is unfortunately often different for our patients with cancer. As there are no uniform regulations that clearly define what form support for chronically ill children has to take in detail, the situation varies from one school to the next and one canton to the next. Whether integration succeeds is thus chance. It stands and falls with the commitment of the school. If not only education itself but also integration was compulsory, the situation would certainly be different.
What has to change for school integration to be more successful during the long period of illness and for the children not to lose contact with their classmates?
When a child is diagnosed with cancer they suddenly lose their familiar world, their home school and their classmates from one day to the next. For months and even years. From my point of view, schools should raise awareness of the disease so that there is greater willingness to support sick children in the long term and prepare them as optimally as possible for going back to school. One solution could be hybrid teaching, i.e. a mixture of online and face-to-face teaching that is adapted to suit the child’s state of health and therapy-related absences. The corona pandemic showed us that this works. Why can’t this be offered as a standard for children with cancer? Of course, the effort for schools would be greater, but it would prevent these children from losing touch with the subject matter and the class. We have had good experiences with the school robot Nao*, for example, and there are now other technical aids such as a simple tablet that would enable a sick child to participate actively in class for at least a few hours. Unfortunately, there are no legal requirements for this kind of teaching in the case of chronic diseases. This means that an important opportunity is being missed to integrate the children concerned back into school in the long term. This in turn can have a negative impact on both their educational prospects and their well-being.
Why is it so important at this age for the children to be in touch with their classmates?
School is much more than a place for imparting knowledge. It is also a place for social learning and personality development. For young people in particular, contact with their peers is a decisive factor in their socialisation. If they suddenly have no contact with school and classmates for a long time due to a life-threatening illness such as cancer, those affected can suffer from psychosocial consequences such as anxiety, depression and loneliness. Successful integration measures therefore mean that everything possible is done to ensure that a child who is ill can follow lessons as well as possible despite their absences and does not have to repeat a class, which would lead to a loss of contact to their social reference group, in other words their peer group. To ensure that there are not just individual cases in which schools and teachers put their heart and soul into helping a child, it should be compulsory at national level to provide online teaching for affected children. This would naturally require additional resources, but with around 350 new diagnoses per year, the number of children and adolescents with cancer remains manageable. I would generally like to see more understanding and greater consideration not only for children with cancer but also for other children with chronic diseases. This is the only way to make school integration easier and thus more successful in the future.
What happens after therapy when a child can go back to school?
Whether re-integration into a child’s original school works also varies greatly. Unfortunately, schools are often unaware of the late effects of childhood cancer. The disease and aggressive therapies have left their mark on most of these children and adolescents, although these marks are not necessarily visible. They are suddenly less able to concentrate, their memory and attention span are weaker, they can no longer complete their tasks at the same pace as before and may tire more quickly. In some cases, their personality also changes. For example, the treatment of leukaemia takes longer than a year. However, the chemotherapy used is so aggressive that, during this time, the brain cannot develop as it would in a healthy child. The children affected therefore need more time to catch up with certain neurocognitive developmental steps. At the beginning, people usually still have a lot of understanding for them, but the longer they need, the more challenging the situation becomes for them. Some of them are lucky and receive excellent, effective support during the long therapy period which means the transition usually works well. However, when children have not received optimal support, experience shows that re-integration is also difficult. They then might have to repeat a class or even change school. This means a child is once again torn out of their established social network of relationships and loses contact with their friends and schoolmates. This experience can be very traumatising and in certain cases may require prolonged psychotherapeutic intervention.
What would you like to see happen to make re-integration in schools more successful?
Even though some childhood cancer survivors are limited in their abilities due to the late effects, their intelligence is usually still intact. Therefore, from my point of view, the answer is not to simply let these children and adolescents repeat a class or send them somewhere else. We do everything in our power to make the integration as smooth as possible. In many cases this works well – especially with the measures we can use to compensate for any deficits and that can be implemented in discussions with the school. But with some children, it can be anything from difficult to impossible if the necessary support is missing. Then we have to intervene over and over again and involve all the responsible institutions up to the school authorities. These discussions involve going over the respective medical history and existing deficits again and again – something that can be very stressful for both children and parents. I would like to see a school system that is open and flexible enough to give every sick child the best possible opportunities by allowing them to attend lessons on a regular basis and stay in their class. From my professional experience, I know that the people concerned are not looking for pity, but for an understanding of their situation and the willingness to do everything that is needed so that school integration really can succeed in the short and long term.
* Nao is a humanoid robot that can be used in schools. The Avatar Kids project makes sure that young long-term patients do not lose contact with their schoolmates and remain socially integrated.