Children with life-threatening illnesses are well aware of their condition and being kept out of the loop during medical treatment only increases their stress.
Phil Jones, an expert in child participation. Photo: Matthew MirabelliSimilarly, children caught up in court processes do not always understand what is going on because everything is being conducted by adults.
“While children in different countries are increasingly being asked what they think of their rights, the concern is that this is quite often relatively tokenistic,” Phil Jones, an expert in child participation told the Times of Malta.
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The University College London professor referred to the prevalence of the “rights veneer”, where adults give the appearance that they are engaging with children and responding to children’s rights, but actually undermine such rights.
According to feedback from children involved in rights-based groups in various countries, adults often asked for children’s opinions, but either appear to do nothing with it or did not inform the children what they had done with their concerns, he added.
Prof. Jones will be addressing the President’s Foundation for the Wellbeing of Society’s fourth national child well-being conference on Monday, after spending a day with Maltese children discussing issues that concerned them.
He will provide insights from the book he co-wrote with Sue Welch called Rethinking Children’s Rights and draw on recent UK research funded by the Lankelly Chase Foundation.
Among others, he will refer to a pilot project that offered the opportunity to children to train as researchers and develop projects to explore their own and other children’s experiences and views.
At the end of the project, they asked national charities that lobby on children’s behalf, how they would represent their views. They then decided which charity they wanted to lobby for change based on the replies they received.
The project’s results were shared with Maltese children, who were also asked to flag what mattered to them within the local context.
The younger ones wanted to find out more about children’s right to play, while others mentioned children’s education experiences, including homework and curricula and the effect of unemployment on children.
Prof. Jones told Times of Malta of the importance of gaining children’s perspective on decisions that affect them.
Among others, he referred to research in Northern Ireland which illustrated ways that enabled children with cancer understand what decisions were made about them and achieving their consent. This was done by creating child-friendly information and learning how to talk to children about what is happening to them.
Other research focusing on children with life-threatening diseases showed that professionals and their guardians often refrained from providing information to children so as not to upset them.
What the researchers actually found out was that children were only too well aware of what was happening to them, but they felt really lonely and isolated because no one was talking to them about it, Prof. Jones added.