The Social Representations of Rare Diseases in Cameroon: A Descriptive Phenomenological Study of Ten Mothers of Children Suffering from a Rare Disease in Yaounde.

Abstract:

Rare diseases (RD) are challenging complexe and sometimes novel health events that give rise to numerous interpretations in society. RDs have very low prevalence and the majority do not have treatments. They are chronic, debilitating and may lead to premature dead. Moreover, most of these diseases do not have specific names in many cultural lexicology making them to be viewed as abnormal phenomenon. In many cultural areas, a normal disease is one that is known, mastered and especially treatable; when a disease is resistant and persists despite actions engaged to manage it, like RDs it becomes mysterious and suspicious. The aim of this paper is to describe the social representations of RDs in Cameroon. In this light, data presented here were obtained by applying a qualitative inquiry method which allowed us to explore in-depth descriptions, explanations and narrations of the experience of mothers who have children suffering from a RD. Thirty (30) mothers were met in Yaounde and Douala through a patients’ organization and they were selected using a non-probability (purposive) sampling from November to December 2021. The theory of social representations was utilized (Jodelet) to determine the genesis of knowledge constructed on RDs in Cameroonian context.