Impacts on the daily life of mothers of children with down syndrome : the mothers' perspective

Abstract

Abstract Rational: Down syndrome is the most common genetic chromosomal condition. The children with Down syndrome (DS) experience delay in their cognitive and physical development which causes difficulties to perform in self work for the DS children. The mothers of children with DS have to provide more care to their children. They face challenges to maintain the time schedule in their daily life. They also face stigmatize attitude from the community due to have the children with Down syndrome. This study is important to know about the daily life of the mothers of DS children. Objectives of the study: To explore the experiences of mothers in self care, productivity, leisure and social participations with Down syndrome child; to find out experiences about family and community supports and financial status with Down syndrome child. Study design: The study is an ethnographic study under qualitative research design. Through the convenient sampling method about 10 mothers of child with Down syndrome were selected as participants for this study. Data was collected by using face to face interview with a semi-structured questionnaire. Data was analyzed by qualitative content analysis. Result and Conclusion: The study findings reported that the DS mothers face challenges to perform their own self care activities, productive works and leisure due to spend much time to look after their children. These mothers get enough positive supports from their family members and they can participate in different social functions. However, they don’t get enough supports from their community and their expenses become increased which affects their financial condition due to have the children with Down syndrome. This study is important for the Occupational therapist to work with mothers having children with Down syndrome. The Occupational therapist can promote the mothers’ coping strategies in managing the Down syndrome children.