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Abstract
Although an increasing number of ventilator-assisted children are being cared for in the home, few studies in the literature evaluate the resulting quality of life from multiple informant perspectives. A questionnaire was used to gather data on 38 ventilator-assisted children from the children themselves and their caregivers about activities of daily living, measures of independence, and psychological state. The majority (79.4%) of ventilator-assisted children were perceived as either satisfied or very satisfied with how they spent their time, and most (77.1%) were rated as having an excellent or good emotional adjustment to the need for mechanical ventilation. Children older than 12 years were reported to be significantly less satisfied with their daily activities than the younger children, but greater activity levels correlated with greater levels of total satisfaction. A higher total satisfaction did not correlate with the age at onset of assisted ventilation, or the amount of time spent in other activities. Adolescents and primary caregivers had similar responses to most activity and independence parameters on the survey. There were no significant differences in parents' perceptions of the adolescents' emotional status as compared to the adolescents' self-assessment of their emotional status in any parameter.