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Kennedy Inst Ethics J. 2005 Dec;15(4):371-83.

Acceptance, avoidance, and ambiguity: conflicting social values about childhood disability.

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Families and Health Care Project, United Hospital Fund, New York, NY, USA.


Advances in medical technology now permit children who need ventilator assistance to live at home rather than in hospitals or institutions. What does this ventilator-dependent life mean to children and their families? The impetus for this essay comes from a study of the moral experience of 12 Canadian families--parents, ventilator-dependent child, and well siblings. These families express great love for their children, take on enormous responsibilities for care, live with uncertainty, and attempt to create "normal" home environments. Nevertheless, they experience social isolation, sometimes even from their extended families and health care providers. Their lives are constrained in many ways. The challenges faced by parents of technology-dependent children raise questions of justice within society and within families.

[Indexed for MEDLINE]

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