Maladie génétique la plus répandue dans le monde, la drépanocytose se manifeste chez l’enfant principalement par des crises de douleur localisées. Cet article analyse les représentations que les enfants atteints ont de leur corps et de leur maladie. Il cherche à comprendre leur rapport subjectif à leur corps et à la maladie et l’impact de la manière avec laquelle la maladie est parlée en famille.

Quatre enfants ont été rencontrés dans un hôpital de jour en région parisienne. Il leur a été proposé un dessin du bonhomme et un entretien semi-directif sur le thème de leur maladie.

L’analyse des données ainsi recueillies met en avant l’inscription des douleurs de l’enfant dans le dessin et l’impact du tabou familial autour de la maladie sur le processus de construction de l’image du corps chez les enfants atteints.

Cette recherche pose donc la nécessité de parler de la drépanocytose en famille afin de permettre aux enfants atteints de donner sens à la douleur et à leur corps douloureux.

The most common genetic disease in the world, sickle cell disease manifests in children mainly through localized or generalized pain attacks on the body, chronic anemia and higher susceptibility to infections. Sickle cell crises are most often chronic, unpredictable and can lead to multiple hospitalizations. Because of its representation as a death sentence of the affected child or as a manifestation of the transgression of an ancestral norm by the family, sickle cell disease is a taboo in sub-Saharan African families where it is a forbidden subject between children and adults or even between children. Adults use this method as a way of protecting children from the potentially traumatic exposure to death. This article analyzes the representations that children affected by sickle cell disease have about their body and their illness. It seeks to understand the subjective relationship between their body and disease, and the impact of the way in which the disease is spoken about amongst their family. The aim is to better understand the impact of the disease on body image by linking the illness with what the child says and knows about it.

Four children, three girls and one boy between the ages of nine and twelve years old, all suffering from sickle cell disease, were interviewed during their annual checkup at a hospital in the Parisian region. Each of them was accompanied by at least one of their parents. This small sample does not make it possible to formulate generalizable conclusions concerning sex and age. Each child, individually and with the consent of their parent, was shown a drawing of a man and engaged in a semi-structured interview on the subject of their disease. The handover and interviews took place before their therapeutic education session to prevent the child from repeating what they had just heard about their illness. The interview was recorded for three of the children, but one mother refused let her child be recorded. For this interview, a written summary was made to take note of the highlights related to the purpose of the research for analysis. Drawing data was analyzed with Royer's approach. The interviews, for their part, were the subject of a thematic analysis. These levels of data analysis are complementary.

The data from the drawings does not show any alteration of the body pattern in children. However, in all of the drawings, even with the distancing through the representation of another, there is an inscription of pain in the drawn body. The drawings, like the commentaries, show the existence of a complex link between knowing about but not understanding their disease, and showing/saying something of their body, as they live it. The drawing shows both the need and desire to discuss and express their pain, and the fear of doing so, as well as the difficulty of finding the words to express and represent the strange familiarity that is their disease. The family taboo around the disease is an obstacle to the construction of body image in the children, who have shown difficulties in talking about their body. The family groups did not seem to support the children in discussing these maladies.

This research therefore raises the need to talk about family sickle cell disease in order to enable children to give meaning to their pain. It also shows the need to promote family discussions (between parents and children, but between children) about sickle cell disease. This can be done, for example, by creating expression groups that, in care institutions, help each participant interact with family members and health care teams to communicate about the disease. This proposal imposes an overview of the help that children and parents want to receive.