“Parents with a child with cancer need a wide range of support”
An interview with Angela Engel, social worker at the cantonal hospital in Aarau
Angela Engel works in the cantonal hospital in Aarau, one of the nine highly specialised paediatric oncology centres in Switzerland. As a social worker, she looks after families with a child suffering from cancer. She knows the many challenges those affected face and would like to see more understanding and tolerance for them.
Ms Engel, you support parents who have a child suffering from cancer. Could you tell us a little about what you do?
Our role in Social Services is to support parents in difficult situations by providing advice and relief. We are usually involved relatively early on after a diagnosis has been given; we review the child’s family situation and talk to the team treating the particular patient to decide where and how we can best help. Nowadays, the challenges parents are faced with when their child suddenly falls ill are as different as the varying family models we have in society. We try to talk to those affected about their worries and needs and offer support where it is most urgently needed. Ideally early enough to prevent parents from collapsing under the strain because they basically aren’t going to get a breather, be able to take time off, for months.
What exactly are your tasks?
With a disease as life-threatening as cancer, the challenges are many and varied. The therapy can take several months or years, the success of the treatment is uncertain and there can be serious late effects. Just getting through requires a lot of strength, staying power and a conscious use of your own resources. Our tasks are very varied and range from practical matters, such as organising household help or a visiting service for the sick child, to discussions with the employer, applying for financial aid and clarifying important social security issues. But often it also helps to simply listen. For many parents, it is good to be able to talk openly and honestly about their situation and their fears.
What are the most acute problems that families face?
Parents with a child with cancer need a wide range of support. Many people don’t know exactly what to expect when they first hear that diagnosis. In addition to the parents’ great concern for the child, they are usually worried about the financial side of life as it is unlikely they will be able to pursue the ‘normal’ job they had before the illness for an indefinite period of time. There are also practical issues to do with organising everyday life, school and care for the siblings. These issues can be very complex, as there are plenty of families which no longer work according to the ‘classic’ father-mother model. The specific requirements and options for organising and coping with everyday life with a sick child vary according to the type of family, whether single parent, patchwork family or co-parenting.
Are financial problems a common issue in association with the disease?
Yes, the question of finances comes up relatively quickly. This is because, on the one hand, monthly expenses increase due to the illness, while on the other, the family income generally decreases. It is usually the case that at least one parent is unable to work for the entire duration of the therapy, or can only work to a very limited extent. It is also important to know that the compensation for care leave amounts to 80 per cent of the average earned income. If the household budget is already very tight, the families affected quickly find themselves in a desperate financial situation. Single parents are therefore hit particularly hard. The many additional expenses caused by the illness, for example for travelling, parking, meals and overnight stays away from home or looking after siblings are also a major risk. Being ill in Switzerland is expensive and insurers often only cover part of the costs, if at all. For this reason, we always clarify the family’s social security situation right at the start. We check whether specific aspects of treatment are covered by health or invalidity insurance, and if they are, exactly which ones. Unfortunately, the situation is often disillusioning. For example, there is no right to a home help to relieve parents – not even during the intense phase of the illness. Instead, it is foundations and associations that step in when families need financial help.
What is the situation under labour law and how do employers deal with the issue?
Since 2021, parents have been entitled to 14 weeks of care leave to look after their seriously ill child. Even though the legal situation is clear, the level of uncertainty in dealing with the issue varies from company to company. If there are problems, we step in to talk to the employer, mediate between them and the parent, and sometimes help with the application for care leave. We experience everything in our practice. Some parents are very lucky to have a very understanding and well-informed employer, while others have to struggle with a lack of understanding and very little tolerance regarding their difficult situation. So reality in fact varies and there are not always quick and easy solutions.
How could employers help?
Parents with a child with cancer find themselves in an absolutely extreme situation and often feel overburdened by it. Some people don’t know how to talk to their boss about their difficult situation and their entitlement to care leave. Although the 14 weeks are helpful, they are unfortunately not nearly enough. In addition, experience has shown that the understanding of employers decreases significantly after a few months. Dealing with the topic of childhood cancer is difficult and frightening. This makes it all the more important for the parties involved to be open and honest with each other. In order to lighten the burden on parents’ shoulders in this situation, less pressure and greater openness to more flexible working time models on the part of employers would be desirable.
How else can parents with a child with cancer be supported?
One important aspect is certainly a helping hand in everyday life and taking care of healthy siblings. They also suffer and tend to get short shrift. Their parents are often absent and family life is centred around their sick sister or brother. The people close to the family, whether grandparents, other relatives or friends and parents of schoolmates, can play an important supporting role here. As far as the organisation of everyday life is concerned, many parents try to manage without major outside help, at least in the beginning. But when the laundry starts to pile up, there hasn't been a proper meal on the table for weeks and nobody has time to do homework with the healthy siblings, at some point it becomes clear that things can’t go on like this. With the family’s consent, Social Services then try to find external support, for example in the form of a home help financed by an association or foundation.
What specifically can family, friends and neighbours do to help?
Mothers in particular tend to continue to bear the main burden of caring and doing the housework, and thus often reach their limits. Unfortunately, this state of emergency often sees them neglecting themselves – something that really shouldn’t happen because it is an important prerequisite for being able to withstand extreme stress over many months and sometimes years. In addition to professional care, what really helps those affected is having friends and family that support them over the long term and take the pressure off in everyday life. This includes things that are very simple, such as going shopping, doing the laundry, looking after a healthy sibling, cooking meals, visiting in hospital and much more.
* The paediatric oncology department at Aarau Children's Hospital is one of nine centres in Switzerland that are permitted to treat children, adolescents and young adults with cancer as part of highly specialised medicine (HSM). Since 2023, the department of the KSA Children's Hospital Aarau has also met the high requirements of the German Cancer Society (DKG) for a paediatric oncology centre. This makes the KSA Children's Hospital Aarau one of the only three DKG-certified paediatric oncology centres in Switzerland.