Children and parents have the right to informed participation in all decisions involving their health care
Hester Rippen, director of Stichting Kind en Ziekenhuis and vice-coordinator of EACH, a Eurochild member, explains the importance of paediatric trainings and the challenges children in hospital face everyday in Europe.
Could you tell us what EACH (The European Association for Children in Hospital) does to protect and promote the rights of children in hospitals?
Until the 80s, parents were allowed to visit their children in hospital for only a few hours and were separated from them for the rest of the time. Back then, even small procedures took a long time, so children had to spend many days in hospitals. For this reason, parents and parent organisations started sharing information and in 1988 in Leiden, Netherlands, they united and created the EACH charter (European Association for Children in Hospital).
It’s made of 10 points simply stating what is important for a child in hospital and other health services. The first article says that, unless it’s necessary, a child could be cared for outside a hospital, at home or in day care. Parents should also be present all the time.
What we do at EACH is promoting the charter and making sure hospitals, other health services, organisations and governments implement it. We need to raise the awareness of these issues among health care providers, politicians, paediatric doctors.
What is the biggest success EACH and its members have achieved since its foundation?
In the Netherlands we created a Quality Mark based on the Charter together with extra criteria and we check how child and family centred healthcare organisations are and help them move in the right direction. 95% of all the hospitals in the Netherlands applied and received a quality certificate from us. Resulting, among other things, in rooming in for parents in all hospitals free of charge. In Italy the charter even got into the law.
In the rest of Europe the situation is different. In Austria, parents still have to pay to sleep in the room with their child, in Czech Republic only a few hospitals are really child-friendly and parents are rarely allowed to stay.
The main focus should be respecting the fact that a child is different. Children should be treated in a different way in hospitals. A child is not a small adult. You need to take into consideration their age and the fact that their development is different, otherwise it will cause traumas.
What are the difficulties that children and families usually face?
First of all, if you treat a child, you should consider also their siblings and family members. You should include everybody. You should communicate with the child in a manner appropriate to their age and understanding and avoid talking only to the parents (article 4 of the Charter). Treating a child takes more time because you need to prepare both the children and the family.
Moreover, children and parents have different needs and opinions on what is happening and what should happen. Paediatric nurses and doctors are trained for this, but in many European countries this is not considered important and there’s a lack of doctors and nurses trained for paediatrics in hospitals.
Children also want to play, study and grow, so for chronic cases you need to allow them to develop. In the Netherlands the time children spend in hospitals is less and less. For example, if you’re in schools, paediatric nurses could come and treat children so they won’t skip classes.
Play specialists are professionals that help children with these issues. They prepare children and families to face hospitalisation and help the children to be a child at the hospital. They should be present in every health care organisation.
Another issue is the fact that medicines are tested on adults and as we said children are not small adults, they are anatomically and physiologically different. It’s dangerous. This is why we try to talk to the European Commission’s Directorate responsible for Health in Brussels and other departments because children have their own rights and needs. Within the healthcare systems across Europe these rights and needs are not yet taken enough into consideration.
Do you think there is a general improvement in children’s health or in the way the charter is applied nowadays?
We’ve made a huge improvement, of course not in every country, but it is easier now to get people to listen to you and the EACH charter is known and applied in different situations. When we started parents did not have a voice and children were ignored. We’re really proud of the results we reached: educational programmes in hospitals, parents allowed to stay with their hospitalised children, parents may now also be present at all times including procedures (outside of operating room), awareness in governments, separated wards for children, but we’re not there yet! In all countries there is still need for improvement. In most countries more than in others. It should be even better! Children are the future.
Are the difficulties that children face every day different from the ones faced by refugees and especially unaccompanied children?
We have seen that on paper children can get the same healthcare, but in reality they are moved around over and over again, they do not have their files with them, so they cannot receive the right treatments and have to restart from scratch every time in different hospitals. As a refugee child you should have the same access to healthcare than a child who was born in that country.
These children also have a psychological burden with them; they have suffered. Refugee children do not need only vaccinations and other treatments, but also stability to allow them to have a good education, health and development. We just released a resolution to emphasize the importance of the continuity of care of refugee children.
What can governments do to better provide healthcare to refugee children?
They can make sure that the enforced relocation of refugee/asylum seeking families with a sick child is avoided in order to provide continuity of care and avoid separation from parents. It also applies to children under the age of 18 who have arrived unaccompanied, and also to those who have a trusted carer(s).
They can make sure that all health care professionals are informed by their own national health system of the specific practice in place for children who are refugees/asylum seekers. In turn this practice should be explained to these children and their parents / carers.
They can make sure that sick children and their health records are systematically traceable within and across countries. They can make sure that extra efforts are made to communicate with refugees/asylum seekers in a clear, understandable way (by oral and written translation) in a manner appropriate to age and understanding.
At the Eurochild Conference we asked participants what they would do if they were prime ministers of their country. What would you do to promote the rights of children and parents in hospitals and other health care services?
We always say: ‘don’t talk about us without us’, but it’s difficult to achieve, so the first thing would be getting involved with parents, parent organisations and children. It’s ridiculous how we make decisions that affects children, while they could bring so much to the table. So as prime minister I would implement a law making it mandatory to involve the child’s perspective in all policies and laws because children are not small adults.
Are there projects or calls that might be interesting and relevant to any of our members willing to cooperate with you?
We have just translated to English our summary of the Dutch report ‘’ Paediatric Care System: health care for sick children outside a hospital. New health care system in the Netherlands starting in 2016 ‘’. The report describes a system where the ill child and the surrounding family are given a central place at all times and where at the same time the viewpoint ‘having a right to health care’ is replaced by the principle ‘care if needed where needed’.
But foremost as a group across countries we can achieve more. The bigger the group the more we can accomplish. We are looking for new members in France, Spain, Denmark, Norway and most countries in Eastern Europe. Please look at our website and our EACH Charter with it recently updated annotations and apply. We can help implementing child and family centred care in health care with the knowledge from all our current members.