"I feel sorry for myself! The ordinary life of a sickle cell child in Bamako
Keywords:
Mots clés : vécu – enfant – drépanocytose - BamakoAbstract
Sickle cell disease is a disease that affects the quality of life of many young Malians. Some social science research has focused on popular representations of this disease. However, almost nothing is known about how sickle cell disease affects the lives of adolescents, particularly from the point of view of relations with the family circle. The ambition of this work is to contribute to filling this gap.
We decided to collect the data for this research based on the biographical accounts of an adolescent girl and her family circle. In total, we conducted 10 interviews between the months of June and July 2018. All interviews were transcribed and subjected to content analysis.
The results of the study show that sickle cell disease is a disabling disease. It creates tensions between siblings on the one hand, and parents and other children on the other, mainly because of the "privileges" granted to the child as a result of medical recommendations (partial exemption from domestic chores, individual meals, etc.). Young patients engage in coping strategies to preserve social ties.
Our study has highlighted the particularly difficult situation of the sickle cell child who faces a double challenge: the suffering of the disease and the psychological suffering. A complete care must take account of this double suffering.
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