An examination of experiences of mothers of children with Down syndrome : a two country comparison

The focus of this study is the experiences of mothers of children with Down syndrome (Ds) and the provision of social services for their children and their families. Children with Ds have a range of physical and intellectual differences. This study examined the living conditions and quality of life of children with Ds based on mothers' perceptions about social services and their experiences of having a child with Ds. A two-country comparison of the differences in the availability of resources such as social services was made. The areas of health and education were selected as primary social services. The nature of the problem prompted a qualitative, interpretive approach to the study through the use of case studies, interviews and survey methods to produce practical solutions to the problem. The sample consisted of 68 mothers of children with Ds, who experienced the difficulties of raising their children. Data were coded by NUDIST to produce the headings: family, services, mothers' perceptions, and satisfaction with services. Descriptive analysis indicated four main areas determining the living conditions of children with Ds and their unmet needs. The findings of the study revealed that there are major barriers preventing children with Ds from achieving a normal life. These barriers included the negative attitudes of health and education professionals; a lack of accurate information about Down syndrome; inappropriate social services; the current practices of informing mothers about their child's diagnosis; and difficulty in accessing information about Down syndrome and social services. As a result, it is suggested that there is a need for a new understanding about Ds, which requires re-education and up-to-date information for health and education professionals, mothers, and society in general. Clearly, the range and quality of social service programs offered by authorities in the Ministries of Health and Education in both Australia and Iran need to be reviewed. The conclusion drawn from the examination of experiences of mothers in Australia and Iran indicated that contrary to the literature, mothers' emotional problems are not natural feelings and could be prevented if professionals changed the traditional way of pointing out the negatives, and instead, emphasise the potential and possibilities of a child with Ds. The research generated a background report for the Australian and Iranian Ministries of Health and Education with the intention of contributing to an improved quality of life for children with Ds.