Référence bibliographique 
Levine, Carol. 2005. «Acceptance, Avoidance, and Ambiguity: Conflicting Social Values about Childhood Disability ». Kennedy Institute of Ethics Journal, vol. 15, no 4, p. 371-383.
« [T]o document and analyze the ’moral experience’ of these families [who care for ventilator-assisted children], not in categories given to them but as they defined and commented on the issues. » (p. 373)
« The study, conducted by a multidisciplinary team from the Montreal Children’s Hospital, followed 12 families who had been caring for a [ventilator-assisted children] for at least three to five years. In all, 38 parents, children, and siblings participated (…) collectively and individually [through semi-structured interviews], and were observed at home. (A few families had more than one affected child). The children, who ranged in age from under 2 to 19, required ventilator assistance for a number of reasons—central hypoventilation syndrome, myopathy, muscular dystrophy, spina bifida, or obstructive apnea. Four of the 12 children were ventilated through tracheostomies and 8 through face masks—all except one of the latter was ventilated only at night. The families were French Canadian—a few were of English background—and were mostly middle or lower middle class. » (p. 373)
Type de traitement des données :
Analyse de contenu
« 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 means 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. » (p. 371)