1. Living with a child with MSUD: Psychosocial issues of Filipino parents with a child with maple syrup urine disease
- Author
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Ma-Am Joy R. Tumulak, Carmencita D. Padilla, Jose Carlo E. Ongchangco, Mercy Y. Laurino, John Benedict B. Lagarde, Ellen S. Regalado, Augusto V. Legaspi, and Elizabeth R. Ventura
- Subjects
Filipino parents ,Maple syrup urine disease ,Newborn screening ,Philippines ,Psychosocial issues ,Genetics ,QH426-470 ,Medicine - Abstract
Purpose: 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. This study aims to explore the psychosocial issues experienced by Filipino parents with children having MSUD. Methods: This is a descriptive and qualitative study. One-to-one interviews using a semi-structured set of questions were done between the months of November 2015 to March 2016. A total of 12 parents were interviewed. Thematic analysis was used. 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: A diagnosis of MSUD on the child places considerable caregiver burden on the parents. Findings have important implications for genetic counselors.
- Published
- 2024
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