Quality of life in families of children with Down Syndrome: A grounded theory approch

The birth of a child with Down syndrome is associated with considerable challenges for the family. This challenge could change the quality of family life. Therefore, it is critical to investigate the quality of life in families with a child with Down syndrome.

This study aimed to provide a conceptual model of the quality of life in Iranian families who had a child with Down syndrome.

A total of 17 university professors and family psychologists who had experience in the field of Down syndrome participated in this study. Semi-structured interviews were used to collect data. A systematic method (Strauss & Corbin, 1998) was employed for data analysis based on Grounded theory.

114 concepts and 20 categories were identified from the open coding process which include: Causal condition; socio-economic status, family environment, health, independence and, ability of the child with Down syndrome, coping skills, attitudes, beliefs and values, behavior and ability of specialists. core phenomena; individual- socio- economic factors. context; the reaction of relatives, parents’ social conditions, changes in physical condition and ability of family members and, child and family abuse. interventing condition; social acceptance, cultural education and public policy. strategies; concern, spirituality, parents’ community. and consequences; isolationism/ collectivism, futurism/ neglect, adaptation/ incompatibility.

The results showed that the main problem for families of children with Down syndrome is worrying about the future. Some families have turned to spirituality, while others form parents’ groups and trying to provide appropriate conditions for the family and child with Down syndrome. Relying on the results of this study, the policy makers of the mental health sector can be directed towards improving the quality of life of families with children with Down syndrome.