Factors Affecting the Quality of Life in Families of Children with Down Syndrome: The Lived Experience of Families and Professionals

Down syndrome is one of the most common chromosomal disorders, and the birth of a child with this syndrome can greatly impact the psychological state of parents and other family members. The purpose of this research was to study the factors that affect the quality of life in families of children with Down syndrome, based on the lived experiences of both families and professionals in this area. The research method used was qualitative, and the study included 14 families and 15 professionals who shared their experiences through semi-structured interviews. Families were selected from the special education system, while professionals were selected via snowball sampling until saturation was reached. Data were coded in three stages (open, axial, and selective coding) and analyzed. The open codes consisted of 24 concepts, while axial codes included supports received, acceptance, coping skills, child performance (function), worry, and future security. The lived experiences of families and professionals showed that receiving support, accepting the child by families and community, family coping skills, child performance, and future security are all important factors for the quality of life in families of children with Down syndrome.