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Sickle cell disease, the sick Children’s care and the experience of their mothers in a Cameroonian hospital

Hassan Njifon Nsangou

Sickle cell anemia is the most common genetic disease in the world. It is a lethal disease that manifests in children mainly through unpredictable and generalized or localized pain attacks on the body, chronic anemia and higher susceptibility to infections. Due to the chronic, unpredictable and serious nature of crises, sick children are regulary hospitalised most often after the failure of family initiated self medication . These children are assisted by their mothers and sometimes by their sisters during their hospitalisation. The culture makes the mother the main responsible for the question of health and education of children which the father is the main financier. The mother overinvests in the care of her sick child. This enables her to blame herself and assmilate the transgression of an ancestral norm that she would have committed. However, during the care of the sick child, there is a dyssimetry of knowledgement between the caregivers and the mother regarding the care and the protection of the child against crises. Caregivers hold more effective knowledge than that of the mother in preventing and relieving the child’s crises. The mother is therefore relegated to the second rank in the care of her child with the main role answering the questions of caregivers concerning her sick child and his crises. Caregivers find themselves invested with an over protective function for the sick child, putting the mother in the background in the process of caring for her child. This research aims to understand how mothers experience this reality induced by the care of their sick child in a hospital environment. The objective is to better understand the subjective relationship that these mothers have with the care of their children in order to better support them, to make them partners of this care and thus to make the family a resource for the sick child and for healthcare professionals.