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Qual Health Res. 2008 Aug;18(8):1075-83. doi: 10.1177/1049732308320112.

Living in a world of our own: the experience of parents who have a child with autism.

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Faculty of Nursing, University of Manitoba, Winnipeg, Manitoba, Canada.


In this article, we discuss findings of a hermeneutic phenomenological study that sought to describe the experiences of parents who have a child with autism. Qualitative interviews were conducted with parents from 16 families of children with autism residing in a western Canadian province. "Living in a world of our own" emerged as the essence of the parents' experiences. In "living in a world of our own," parents described a world of isolation. Three themes representing the essential challenging elements of the parents' experiences included vigilant parenting, sustaining the self and family, and fighting all the way. Although much is known about the fundamental importance of support to parents of children with chronic conditions and/or disabilities, findings from this study indicate that knowledge has not been adequately transferred to the care of children with autism.

[Indexed for MEDLINE]

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