Représentations émotionnelles de la maladie chez 22 enfants drépanocytaires

Background

The emotional and psychological impact of chronical disease among children is considerable. The aim of this study was to explore the emotional representations of sickle cell children followed up at Bordeaux University Hospital in both qualitative and quantitative ways.

Methods

Prospective observational study, conducted from February to May 2010 among 22 sickle cell children (SS, SC and Sβ) followed at Bordeaux University Hospital and among their parents. A questionnaire evaluating depressive symptoms and emotional representations was proposed to children and to their parents separately, measuring their child's emotions. Children were asked to draw themselves during sickle cell crisis and without any painful episode, in order to illustrate their perception of their disease.

Results

Emotional and psychological impact on sickle cell children was important in this study. Eighty-six percent of children have commonly had negative feelings such as sadness, anger or fear. Thirty-six percent of them had depressive symptoms. Parents largely underestimated this impact. Drawings and answers to the questionnaire emphasized an important lack of disease understanding, social consequences, and depressive affects.

Conclusion

Psychological and emotional difficulties in sickle cell children should be identified and supported. Resources for psychological and educational support are necessary to improve the quality of life of sickle cell patients in France.