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


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Allahyari, T 2000 , 'An examination of experiences of mothers of children with Down syndrome : a two country comparison', PhD thesis, University of Tasmania.

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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.

Item Type: Thesis - PhD
Authors/Creators:Allahyari, T
Keywords: Down syndrome, Down syndrome
Copyright Holders: The Author
Copyright Information:

Copyright 2000 the Author - The University is continuing to endeavour to trace the copyright
owner(s) and in the meantime this item has been reproduced here in good faith. We
would be pleased to hear from the copyright owner(s).

Additional Information:

Thesis (Ph.D.)--University of Tasmania, 2000. Includes bibliographical references

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