Worrying about mum - when children are carers
Mrs Leu, you have been researching children who care for their seriously ill parents - so-called «young carers» - for four years.
Our research focusses on children, adolescents and young adults under the age of 25. They regularly take on caring responsibilities for a physically or mentally ill family member - either for many years or briefly and intensively, for example in a palliative situation when a parent dies. In most cases, these children are caring for parents (50%), less frequently siblings (30%) or grandparents (3-4%). These children are often under-recognised. Their burden can be so great that their own well-being suffers as a result.
Children of sick parents rarely hear the question: «How are you?»
In a sub-project, you interviewed specialists from the fields of education, health and social affairs. What can they contribute to the topic?
We know from international research that if professionals are not sensitised, they cannot identify the young people. This is not only because affected children hide for fear of the consequences, but also because of our patient-centred system: doctors often don't know how many children their patients have, how old they are or what they do. Children of sick parents often hear what they should do, but rarely the question: «How are you?» This small question could change so much. We want professionals to recognise the children concerned.
How many children take on a supporting role in Switzerland?
Previous figures are based on estimates. All we can really say is that we have this phenomenon in Switzerland. Representative figures do not yet exist. I tried unsuccessfully to find out how many young people live in a family where a family member is ill. This spring, we are now launching a national and representative study funded by the Swiss National Science Foundation. We are surveying around 12,000 pupils on this topic in over 700 schools in three language regions. Compulsory school is the only place where children have to be. In this way, we hope to include as many children as possible.
«Children keep themselves hidden out of fear and shame»
Agnes Leu
When children of sick parents hide - don't they do the same in a questionnaire?
Children keep themselves hidden out of fear and shame. Between the ages of 11 and 14, they want to be the same as their peers - to be just as cool, go out or play the same sport. At this age, they find it difficult to admit that they are caring for a relative at home. Some children also don't realise that their family situation is unusual. That's why we survey all children anonymously using a standardised questionnaire - so those affected don't have to identify themselves.
What is the aim of your research?
We strive for equal opportunities for young people in education. On the one hand, we need practical tools to identify the children concerned and, on the other, we want to develop reliable support measures . These include very simple network cards for professionals or a to-do list for young people. For example, a 17-year-old woman took over the insulin injections for her dying father under the guidance of her GP. Her father died during one of these injections. The GP was unavailable. It was traumatic for her. We want to prevent children from being given such tasks. And they need to know how to react in an emergency. We also want to provide teachers with tools to help them recognise affected children in their class. These children are sometimes bullied - even by the teacher, because they don't realise why the child is so different.
«Children need to know how to react in an emergency.»
Agnes Leu
What are the most important results for you so far?
There are also children and young people in Switzerland who have to reconcile their education and caring roles. The studies show that they often play an important mediating role between all the people involved. Although they provide information, they are not allowed to have a say in decisions, and in the personal interviews we also learnt that many of these children would like to go on to secondary school. This is often not possible for various reasons. However, an astonishing fact also emerged: many of these young people are able to deal with the situation in a good way and are very capable.
How do young people deal with the challenge?
In our current issue, we feature a touching story about Guilia (see picture), whose mother suddenly falls seriously ill. Order our March magazine and read this story.
