ESPE Abstracts

Keywords: Congenital Adrenal Hyperplasia, Parent’s experience, Focus Group Discussion

Background: Congenital Adrenal Hyperplasia (CAH) leads to many unseen social burdens for parents, including ambiguous genitalia (in girls), lifelong use of medication, including stress dosing, social and psychological pressure, and stigmatization. This study aimed to investigate various lived experiences of parents caring for their children with CAH in Indonesia.

Methods: We employed a focus group qualitative study. For recruitment, purposive sampling was done on all parents of children with CAH routinely followed at the Diponegoro National Hospital, Semarang, Central Java, Indonesia. We asked three main open questions: 1) What is the main concern of raising a child with CAH? 2) What is the most remarkable experience in raising a child with CAH? 3) What is the biggest obstacle for taking medicine regularly? We recorded, transcribed, and thematically analysed each focus group discussion.

Results: We interviewed parents from 35 families with one or more children diagnosed with CAH (21-hydroxylase deficiency and 11-beta-hydroxylase deficiency). Twenty-four parents of children with the classic salt-wasting CAH. Thirty-two families raised daughters and three raised sons with 46, XY CAH. Thirteen families were raising children below five years old, and six parents had children older than 17 years old (Indonesia’s age of consent). Most parents (16/35) had concerns about the future of their daughters, especially about future spouses/married and the possibility of becoming infertile. Five parents had concern about taking care of the children in the future, three parents had concern about medication availability. The other concern were their children’s gender identity in the future, early puberty, and masculine and aggressive behaviour. Three parents reported their worries about the history of siblings died due to late diagnosis and salt-wasting crisis. Most of the parents did not report problems with taking medicine regularly; however, the biggest obstacle was taking the medication with suboptimal timing.

Conclusions: Parents with children with CAH in Indonesia experience many concerns, particularly about the future spouses of their children, who will take care in the future, medication availability, behaviour, and gender problems that may result in worries for their children. Comprehensive CAH education will decrease their fears, increase compliance, and help them accept their children’s condition.