
Nuha Mohammad Alrayes
King Abdulaziz University, KSAPresentation Title:
The emotional impact on parents of children with down syndrome
Abstract
Down syndrome (DS) is a genetic disorder characterized by learning disabilities, developmental delays, and congenital anomalies. The prevalence in Saudi Arabia is estimated at 18/10,000 live births. Parents of children with DS often experience psychological strain, including depression and stress. The way the diagnosis is delivered to parents can influence their initial response and coping mechanisms.
Objective: To examine the emotional impact on parents of children with DS.
Methods: The study involved mothers of children with DS. A survey consisted of three parts: demographic information, emotional aspects of mothers upon learning about their child's DS diagnosis, and the impact of having a child with DS on mothers, family, and social life, was distributed. Statistical analysis included descriptive analysis and correlations using Pearson chi-square test.
Results: A total of (161) DS mothers completed the survey. In terms of demographics, 80.5% were Saudis. Most mothers had children with DS between the ages of 30-40 years, while husbands were mostly between 40-50 years. About 41.6% reported a tension on their relationship with their partner, with 58.3% experiencing a weaker bond after having a child with DS. Emotional support was lacking for 63.3%. Providing parents with enough explanation was found to reduce self-blame (Sig = 0.007) and mothers accepting that they have a child with DS was statistically significant with her feeling nervous/anxious all the time (Sig = 0.0001).
Conclusion: The study explored sociodemographic factors and emotional responses in families with a child diagnosed with DS. Findings revealed that mothers with additional childcare responsibilities felt limited in their roles and experienced worse work focus and less spousal support. We emphasize the importance of delivering the news of having a DS child in a merciful way to be able to accept the fact and give better care for the D.S child.
Biography
Nuha Alrayes has completed her PHD in 2017 from St. Georges’ University of London. Working as assistant professor at King Abdulaziz university. Have 28 publication in ISI journals that have been cite 175 times and her h-index is 8. My research interest in genetics of rare diseases. I conducted this research through my contact with down syndrome parents. I felt closely their struggle in raising a D.S child.