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.
