Socio-cultural Dimensions of Congenital Adrenal Hyperplasia: An Ethnographic Study from Chennai, South India

AIM: This study aims to provide a medical anthropological perspective on how congenital adrenal hyperplasia (CAH) is perceived and constructed by parents and doctors in India. It aims to put forth the complexities that are associated with CAH and the various experiences that parents and doctors share as a result, while also exploring the influences that culture and medicine have on each other. METHODS: An ethnographic approach was taken to understand CAH in this study, in which families and doctors of children with CAH were interviewed. Fieldwork was done for 2 months in Chennai, Tamil Nadu. RESULTS: A major finding of this study was the faith that parents had on biomedicine in general and doctors in particular. While parents continued to follow the instructions provided by the doctors, they also exercised their agency by questioning the decisions taken by the doctors. The research also revealed that there is constant worry and fear in parents about the future of their children due to the stigma attached to CAH. CONCLUSION: A constant discourse between medicine and culture can be noticed while analyzing the complexities associated with CAH. The study tries to show that medical decisions that doctors take in matters concerning CAH are culturally driven. Surgical corrections done in order to categorize the child into one of the two sexes is an example for the same. Similarly, various structures of family, marriage, and kinship have been medicalized owing to the strong influence medicine and culture have on each other.