Living with an invisible illness: a qualitative study exploring the lived experiences of female children with congenital adrenal hyperplasia

摘要

Purpose Many chronic illnesses are self-evident. However, disorders like congenital adrenal hyperplasia (CAH) are invisible to the naked eye and unnoticeable to others. Therefore, invisible illness is often a shared, misconstrued experience for children with CAH, their caregivers, and the medical community. This experience, along with its lack of awareness and added stigma, may impact overall quality of life (QOL) of such individuals. To facilitate our understanding of QOL of children with CAH, we must first explore their subjective experiences. This study aimed to capture their lived experiences and provide recommendations to support children with CAH. Methods