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The quality of life of ventilator-assisted children
J C Lumeng1, S A Warschausky, V S Nelson
1Dept of Pediatrics, University of Michigan Health System, Mott Hospital, Ann Arbor 48109-0230, USA.
Insights
Most home-ventilator-assisted children report high satisfaction with life and good emotional adjustment. Older children experienced less satisfaction, but increased activity levels correlated with higher overall satisfaction.
Area of Science:
- Pediatric Pulmonology
- Quality of Life Research
- Home Healthcare
Background:
- Increasing number of children require home mechanical ventilation.
- Limited research exists on quality of life for these children from multiple perspectives.
- Home care necessitates understanding patient and caregiver well-being.
Purpose of the Study:
- To evaluate the quality of life in home-ventilator-assisted children.
- To assess daily living activities, independence, and psychological state.
- To compare children's self-assessments with caregiver perceptions.
Main Methods:
- A questionnaire survey was administered to 38 ventilator-assisted children and their caregivers.
- Data collected on activities of daily living, independence, and emotional adjustment.
- Utilized a multi-informant approach (child and caregiver).
Main Results:
- Majority of children (79.4%) were satisfied with their time use; 77.1% showed good emotional adjustment.
- Older children (>12 years) reported lower satisfaction with daily activities.
- Higher activity levels correlated with greater overall life satisfaction.
- Child and caregiver responses regarding activities and independence were similar.
- No significant differences found between self-reported and caregiver-perceived emotional status.
Conclusions:
- Home-ventilator-assisted children generally report positive quality of life and emotional adjustment.
- Age influences satisfaction with daily activities, with older children being less satisfied.
- Promoting activity levels may enhance overall satisfaction for these children.
- Child and caregiver perspectives align on key aspects of daily life and emotional well-being.
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.