“There is a lack of adequate training opportunities for survivors”
An interview with Andrea Kurzo, professional psychologist
Andrea Kurzo is a psychologist specialising in the treatment of children and adolescents with cancer. She works at Bern University Hospital and supports those affected and their parents both during and after the illness.
At Bern University Hospital, psychosocial care is an integral part of the follow-up care services for former childhood cancer patients. Why do you think that brain tumour survivors in particular come to see you?
Children and adolescents who develop a brain tumour are unfortunately the people who struggle the most often with serious late effects. As a result, they find it particularly difficult to find good education and training possibilities, complete their education or training successfully, and stand on their own two feet later on. It is important to know that concentration and memory problems, reduced working speed and problem-solving skills are among the most common late effects of brain tumours. Added to that you have the fatigue syndrome, which leads to them being physically and mentally exhausted more quickly than others and thus less able to work under pressure. These late effects can also affect childhood cancer patients with other types of tumours and impair their educational progress, but former brain tumour patients in particular need a lot of support. We try to meet this need during our follow-up consultations.
For some childhood cancer survivors, the transition from school to professional training or further education is problematic. Why should that be?
Depending on the age at the onset of the illness and the end of the therapy, the problems already start at school. But schools at least can offer more support options, such as compensation for disadvantages, special education and more. This makes it easier to graduate despite the limitations. However, things can become more difficult at the latest when it comes to training or further education because that is when demands increase. As an apprentice, for example, you are confronted with long working hours or time-consuming commuting; as a student, independent and structured working is required. These are all things that aren’t easy for other young people during training or further education. But the burden can very quickly become immense for survivors. In order for their integration to succeed better, they actually need more time and support in everyday life. In addition, these extreme states of exhaustion often cause them to fall behind in their social development. Instead of going out and meeting friends, they need more time to just rest than their peers. This can have a negative impact on friendships and romantic relationships, and in turn trigger psychosocial late effects.
Brain tumour survivors struggle with particularly great challenges due to the late effects. What makes it especially difficult for them?
Former brain tumour patients suffer great psychological pressure because there are hardly any good integration possibilities for them in professional terms. Most of my patients may be limited in terms of their performance, have trouble structuring themselves, may be slower and get tired much faster, but their intelligence is intact. When they realise at 17 or 20 that they cannot find an apprenticeship or have to drop out of their studies and will perhaps be dependent on an invalidity pension for the rest of their lives, they are quite naturally very distressed. Some of them worry about how they are going to pay their way with the inherent risk that they will succumb to depression. And there is a crucial question that many of them ask: “Why on earth did I survive if I can’t actually move on?” What is needed here is not only targeted psychosocial follow-up care, which we already offer, but also vocational prospects that match their skills. This would give them the reassurance that they too have a place in our society, just the way they are.
There is an invalidity insurance (IV) for people with disabilities. How do you rate the support services they provide in terms of vocational integration?
First of all, it is important to know that a disability certificate does not automatically entitle you to occupational support measures from the invalidity insurance. This also applies to former brain tumour patients whose illness is classified as a birth defect. Anyone who needs support with their initial training, for example, should apply to the invalidity insurance at an early stage. They then check the severity of the disability and subsequently decide on the integration measures. However, for survivors with cognitive and/or physical disabilities but normal intelligence, the traditional categorisation of physical or mental disability no longer works. They fall through the cracks in the system because the invalidity insurance is not geared to this type of “new” disability. This can lead, for example, to a childhood cancer survivor being offered an apprenticeship in a sheltered workshop for people with disabilities as the only training option. For those affected, however, this is understandably not the solution they are looking for because their capabilities would enable them to do something different. This kind of workshop is simply the wrong place for them. Rather, professionals should look more closely at where their skills and where their deficits lie. However, survivors are faced with a lack of adequate training opportunities that would actually facilitate their professional integration.
In your view, what would have to change to make integration into working life more successful?
I think that we need to make the follow-up care services in Switzerland even more interdisciplinary in order to meet the great need for support in professional integration. Other countries, such as Germany for example, have gone a long way further than we have. There are centres there that, in addition to medical and psychosocial follow-up care, also offer career counselling and job coaching for childhood cancer survivors. The situation is different here. Affected people and parents complain time and again that they feel they have been left in the lurch with their problems and have to find a solution themselves. This is simply too much for many of them and the risk is great that integration may not work in the short or long term. In some cases, we also help and contact the invalidity insurance, for example. That is not actually one of our core competencies. I would really like to see this kind of offer here too so that we could develop suitable career prospects together with those concerned and accompany them professionally during their training as well as on the job. This would ensure that survivors have a real chance of finding a suitable place in the labour market to stand on their own two feet and significantly improve their quality of life.