Handbook Children’s Participation in Hospitals
Listening to children and actually acting upon what they say requires not only a cultural turn in the way we think of children, but also knowledge of suitable methods for realising children’s participation.
In order to look after patients’ interests, it is essential to have a clear idea of health care consumers’ wishes and experiences. Patient organisations have developed several tools for testing the quality of health care from a patient’s perspective, such as quality marks and quality standards. In addition, consultations are often run with patients through client panels, focus groups, and individual interviews. Though more and more projects continue to show that children also have valuable knowledge and experience, they are consulted rarely, if ever.
In the study of Dedding (2009), children with diabetes commented on the large amount of informational material developed by adults: ’this is absolutely not what my life is like’ and ‘I’m really not such a goody-goody!’ Children also recounted that the informational material is not suitable to share with their friends, which is a shame because every day, these children are bothered with stupid questions like ‘you’re not allowed to eat sugar, right?’ or ‘you probably ate too much sugar when you were little, didn’t you?’. With the aid of professionals, these children have developed their own informational material. It is tough, nice, and especially less good, matching their daily reality: a life in which they take care of their disease, but at the same time one in which the disease plays only a minor role.
We rarely realise that children can express their own views on illness and health which deserve our attention, and that adults are not the only ones who work and care; children do too. They look after their bodies and their diseases while trying to live a life as normal as possible. Furthermore, children do not only take care of themselves, but also of adults, which is beautifully exemplified in Eric-Emmanuel Schmitt’s novel Oscar and the Lady in Pink. Oscar is diagnosed with cancer and though the adults do not tell him, Oscar knows he is dying. He does not say this out loud, however, because it would only sadden his parents more.
When asked how health care can be improved, children in the Wilhelmina Children’s Hospital answered that they would like to see nicer colours on the walls, but also that they want people to listen to them better. Children with Crohn’s disease, a chronic bowel disorder, asked for softer toilet paper, and softer seats in the waiting room, because waiting is so painful now. In her book Children’s Consent to Surgery, Alderston (1993) shows to what extent even young children wish to be informed and are capable of dealing with complex and sometimes painful information, provided that the individual child is informed with sensitivity, and in a clear and appropriate manner.
One rarely comes across adults who do not want to listen to children. What does emerge time and again is that, in practice, it is difficult to actually hear children, and to also act upon that subsequently.
Adults often have so many questions, concerns and ideas of their own which want to be prioritised. Furthermore, children are not as easily drawn out, even when treated very nicely. But even more important, when thinking about children, we mostly think about what they are not yet capable of, instead of what we might be able to learn from them. Adults do not only wish to take great care of children, but they also assume they know best. Unfortunately, this is not always the case. If we want to know how children experience their disease and what kind of problems they encounter, we have to ask children themselves. In a pilot study, regional organisations of Zorgbelang have tested various methods to map the experienced quality of care in the paediatric wards of ten hospitals. The knowledge and experience gained with these methods is described elaborately in this handbook, for other organisations to use.
The aim of this book
Promoting children’s participation in hospitals by:
- describing the basic principles of children’s participation;
- demonstrating the importance of children’s participation by means of inspiring real-life examples;
- offering guidance on starting participative projects with children in a responsible manner.
Though this book is about realising children’s participation, some examples of projects with parents are also included. The fact that parents cannot act as spokespersons for their children is extensively documented in (inter)national literature. Yet sometimes, for practical reasons, it is impossible to start a project with children, for example because a child is too ill, or too young (babies, toddlers), already has too many appointments, or because it is not possible to realise the required logistics. It is also possible that one wants to research aspects of health care which parents have more knowledge of and experience in than children.
This book is written for
- Patient organisations and hospitals aiming to improve the quality of care based on patient experiences.
- Educational institutions which want to contribute to learning to listen to children, and wish to adapt their medical actions accordingly.
- Researchers interested in the views and experiences of children.