Translation of a psychosocial education program for congenital adrenal hyperplasia in DVD format

Abstract

Congenital Adrenal Hyperplasia (CAH) is a life threatening requiring good parental knowledge, in order to manage the daily care and any clinical problems arise. The impact of the condition is significant regardless of cultural background, with near death experiences and genital ambiguity occurring. Parents need to adjust to the burdens, that having a child with CAH creates, for all the family members. The authors have developed a validated CAH psychosocial education program (PEP) for families, which focuses on the essential information required to understand and manage CAH and which has been transformed into a DVD format, to improve access of families to educational resource information. This PEP has proven to be of vital importance in helping families manage this chronic condition[1]. However, it became apparent that families living form non-English speaking backgrounds, and those living in developing countries of South East Asia, did not have access to sufficient resource materials.