Progress has been made in research on pain in children, and there are an increasing number of accurate initiatives to ease it. However, there is still a way to go.

But what about emotional support for children on a daily basis?

To complement the therapeutic assistance, the members of the expert panel focused directly on how children with cancer feel. The backbone of Fondation La Roche-Posay’s commitment to paediatric oncology, the ‘Emotion Scale’ helps create a solid base from which useful, relevant actions can be developed.

The challenge is helping ill children to better identify and express the emotions overwhelming them.

The objective is to help parents and caregivers take into consideration and manage these emotions on a daily basis, in order to make treatment run more smoothly and improve the child’s everyday quality of life.

Children under 5 years old: understanding them better so you can help them better

Still at an early stage of emotional development, young children aged under 5 find it difficult to express their emotional state, regardless of their health. Yet, during periods of treatment for their cancer, they are plunged into an unknown and potentially frightening medical world. This can cause reactions of retreat or regression.*

David Le Breton, an anthropologist and sociologist, professor at the University of Strasbourg, and leader of the first phase in the ‘Emotion Scale’ project commented, “Children under 5 do not yet have full access to language and do not always have the confidence to express how they feel.

What’s more, these children still have a somewhat abstract relationship with death, even if at the hospital they are aware of something tragic threatening them. They are extremely sensitive to separation from their parents; at a time when the child is still developing, this absence can undermine their confidence in the world and in adults in general. They also often feel their parents’ fear, which only adds to their own. They find it difficult to describe their pain, they don’t yet know how to imagine the future properly, living rather in the present. Accessing their feelings involves their parents and the use of adapted techniques like drawing: ‘Can you draw what you’re scared of for me?’, ‘If you had a magic wand, what would you ask for?’, ‘If you had an eraser, what would you do?’, for example.”

During the essential stage of their development, the more we help the child recognise and express their emotions, the more they will be able to deal with them and experience them in harmony.**

Learning more about the psychological states of children undergoing treatment – pain, fear, anxiety, stress, sadness, isolation, fatigue – naturally allows families and care teams to better support them and help them manage their emotions.

“For me, understanding the emotions and feelings of young children with cancer seems to go hand in hand with treating their illness.”
Dr Étienne Seigneur, Child Psychiatrist, Institut Curie

Children, parents, caregivers: the advantages of a shared tool

The process offered to the child through the emotion scale is therefore one of openness and understanding others: a bridge to facilitate discussion and establish a trusting environment for young patients. This tool, built to be useful for children, parents and caregivers, must be able to help them communicate. Simple and easy to use, it is suitable for children of all ages and cultures.

It also allows healthcare professionals to adapt the support and information they provide daily. Based on this emotion scale, it will be possible to develop actions and recommendations to more effectively help ill children with their emotions.

The emotion scale: a carefully constructed project

The first phase of exploratory work, based on analysing the existing literature and the data collected during interviews with parents and healthcare professionals and from children’s drawings, is being carried out by anthropologist and sociologist David Le Breton and his team of postdoctoral researchers.

As part of clinical research, in 2019, the scale will then be designed in partnership with the Unicancer/AFSOS Intergroup for subsequent assessment, publication and, finally, roll-out.

For the project’s completion and validation (under the Jardé Law on clinical research), the Unicancer/AFSOS group has set up a joint research group: the Unicancer-AFSOS Intergroup. Its mission is to thoroughly assess the first version of the tool.

The working group dedicated to the project

David Le Breton
Anthropologist and sociologist, University of Strasbourg, Member of the USIAS (University of Strasbourg Institute for Advanced Study) and his team of five postdoctoral researchers

Dr Dominique Valteau-Couanet
Paediatric Oncologist, Head of Childhood & Adolescent Cancer Research, President of the Scientific Council of the SFCE (French Society for Childhood Cancer)

Dr Étienne Seigneur
Child Psychiatrist, Department of Paediatric Oncology, Institut Curie, Treasurer of the SFPO (French Society for Psycho-Oncology)

Prof Ivan Krakowski
Medical Oncologist, Pain Specialist, Institut Bergonié, Founding President of the AFSOS (French-speaking Association for Supportive Care in Cancer)

Catherine Vergely
Secretary General of the UNAPECLE (National Union of Associations for Parents of Children with Cancer or Leukaemia)

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