Working and Caring for Children with Chronic Illness/Disability: Stories of Disconnection, Cruelty and "Clayton's Support"
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Keywords
chronic illness, disability, carers
Abstract
This paper reports the findings of an exploratory, qualitative study of the life and work of people who are, concurrently, parents of a child with chronic illness/disability, and working full time. Nine women shared their experiences about the demands of caring for a child with chronic illness/disability while working full time. In light of the demands constantly placed on these women as they manage their multiple roles, it was of particular interest that their stories shared feelings of disconnectedness from others, as well as frank recollections of the cruelty and thoughtlessness of partners, family, friends, colleagues and strangers. They also reported their experiences with "Clayton's support" - the support you get when you are not getting support. These stories are shared in an effort to ameliorate the continuing challenges faced by these women.
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