Experiences of Mothers having a Child with Down Syndrome attending Pediatric Clinic at Teaching Hospital, Ratnapura, Sri Lanka

Abstract

Background: Down syndrome is one of the most common genetic disorders. The needs and requirements of a child with Down syndrome go far beyond the needs of a normal child. Therefore, having a child with Down syndrome changes the lifestyle of the whole family. One of the parents, especially the mother, must spend more time and sacrifices to take care of the child. These mothers are at increased risk of stress, poor health status and weakened family relationships. Every mother reacts and behaves differently when raising a child with Down syndrome. Objectives: To explore the physical, psychological and socio-economical experiences of the mothers having a child with Down syndrome attending to pediatric clinic at Teaching Hospital Ratnapura Methods: Qualitative phenomenological design was utilized in this study. Sixteen mothers were purposively selected from the pediatric clinic at Teaching Hospital Ratnapura. Approximately one hour of semi-structured individual in-depth interviews were conducted using a pre-formulated theme list. The interviews were audio recorded and transcribed veratrum. Data were analysed using thematic analysis techniques. Results: Three themes that emerged from the findings were lifestyle changes, positive and negative expectations and less society and community involvement. The need for support and less attention to self and family led to lifestyle changes. Mothers’ negative expectations were unpredictable futures and poor acceptance. They considered living independently as a positive expectation. Society and community involvement indicated positive peer involvement but they have experienced isolation from the society. Conclusions: When raising a Down syndrome child, every mother experienced the situation as more demanding and complex. Specially in the provision of care. Majority of mothers perceived satisfaction with life and relatively mild level of stress. Mothers having a child with Down syndrome influenced by society and community positively and negatively. Sometimes these children are isolated from social groups. In addition, some community groups support them.