Lived Experience of Parents of Infants with Down Syndrome from Early Diagnosis and Reactions to Child Disability

The birth of a child with special needs can cause a big challenge for the family and create a lot of pressure on the family. The strategies used to report this issue to parents can play an important role in accepting the problem. The purpose of this study was to examine the experience of parenting life since parents become aware of the issue and their reactions.

The research instrument was a semi-structured interview. The average time of interviews was 60 minutes and the data were collected from a sample of 17 mothers and 9 fathers aged 39 to 58 years in Yazd. The qualitative data were coded in three stages (open, axial, and selective coding) and analyzed  using software MAXQDA.

The open codes consisted of 19 concepts. The axial codes included four categories of how parents become aware of the disease, parental reaction to Down syndrome, attribution style, and coping resources. In general, the type of parental reactions ranged from full rejection to full acceptance of a child with specific requirements for Down syndrome.

Given the parental experiences since diagnosis of Down syndrome, all parents reported experiencing feelings of sadness and despair. This is a common human experience reported similarly in various studies in different cultures and geographic regions.