Parent-Child Communication about Congenital Adrenal Hyperplasia: Filipino Mothers’ Experience

Peter James B. Abad,1,2 Mercy Y. Laurino,2,3 Sandra Daack-Hirsch,4
Lorna R. Abad2 and Carmencita D. Padilla2,5

1College of Nursing, University of the Philippines Manila
2Department of Pediatrics, College of Medicine and
Philippine General Hospital, University of the Philippines Manila
3Institute of Public Health Genetics, University of Washington, Seattle, USA
4College of Nursing, University of Iowa, USA
5Institute of Human Genetics, National Institutes of Health,
University of the Philippines Manila

Background. Family communication facilitates coping from a genetic condition by ensuring accurate understanding of the illness, its inheritance pattern, associated recurrence risks and risk perception.

Objective. This paper explores Filipino mothers’ experience in communicating information about congenital adrenal hyperplasia (CAH) to their children.

Methods. Descriptive qualitative design was used. Families affected with CAH were recruited via a CAH support group. Semi-structured interviews with mothers were done on the following topics: content and understanding of information communicated, reasons for communicating, and changes and adjustments in the family. Thematic analysis was used to analyze the data.

Results. Five families consisting of 11 individuals, including four mothers, were interviewed. Findings revealed that while mothers are open to communicate with their child about CAH, this is often triggered by questions from the child. Mothers find it challenging to discuss about the condition and when they do discuss, this is most often done to facilitate better understanding among the siblings. There is an attempt to explain the inheritance of CAH but this is also limited to the mother’s understanding.

Conclusion. The findings of the study provide guidance to health professionals on how they can support parents, particularly mothers, in discussing CAH with their children.

Key Words: Parent-child communication, congenital adrenal hyperplasia, genetic counseling, Philippines