Perceived Experiences of Life Problems for Parents with a Down Syndrome Child

Aims: Down syndrome (DS), as the most common cause of mental retardation causes many health problems for families. This study aimed to investigate the experiences of life problems for parents with a DS child. Participants & Methods: This qualitative research was conducted using the conventional content analysis method on ۲۱ Iranian parents with a DS child of over one year of age. Data were collected using online asynchronous interviews in ۲۰۱۷. Snowball sampling was continued until the data saturation was reached. Data collection and analysis were conducted simultaneously by qualitative content analysis. Findings: Participants included ۲۱ parents of children with DS in the age range of ۲۸-۴۹ years old. The analysis of qualitative data led to the extraction of three main themes, including "continuation of a difficult life", "inappropriate atmosphere of the community for acceptance of a child with DS", and "perceived future concerns". Conclusion: The findings showed that parents of children with DS had major common concerns about taking care of their children. It is necessary for health policymaker and healthcare providers to pay more attention to the implementation of medical care and education programs for children with DS. Also, informing the community about DS helps to raise awareness and appropriate social interactions among the families and community members.

Keywords:

Down syndrome , Parents , Qualitative research