Psychosocial Issues of Filipino Parents with a Child with Maple Syrup Urine Disease

Introduction: Maple Syrup Urine Disease (MSUD) is a common inborn error of metabolism diagnosed in the Philippines. A family may experience stress, anxiety, sorrow or feelings of helplessness when a child is diagnosed to have a genetic disorder which can lead to chronic care and disability. An illness in a child affects not only the child, but the whole family as well.

Materials and Methods: In-depth interviews using a semi-structured set of questions was done between the months of November 2015 – March 2016. A total of 12 parents were interviewed.

Results: The diagnosis of MSUD in a child is indeed a stressful event for the family. Parents experienced fear, confusion, and hurt, among other emotions. Having a child with MSUD had a negative impact on their families, especially in terms of financial burden, dietary restriction, and marital conflicts leading to separation. However, some parents reported positive effects such as increased confidence in one’s abilities to care for the affected child and closer relationships among family members.

Conclusion: The findings of this study reflect the complex issues and problems of families with a child affected by MSUD. It will help form policies and guidelines for genetic counseling of MSUD patients and their families in the Philippines to assist families in coping with the diagnosis and improve outcomes of affected children.