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MUHC study looks at family experiences

Home is where the heart is, but is it the best place for chronically ill children? What is home life like when caring for these kids? A new study conducted by researchers at the Montreal Children's Hospital of the MUHC examined the impact of living at home with children who are dependent on technology to breathe. Their findings, published in this month's issue of Pediatrics, showed that although parents found this experience enormously difficult it was also deeply enriching and rewarding. Most of these parents saw this as the only option for their children.

"Over the last few years, there has been a growing shift toward home-based care," says lead author Franco Carnevale, pediatric nurse-specialist at the Montreal Children's Hospital. "Everyone has assumed that 'being home is good.' Our study is the first to explore the validity of this statement and look at the moral dilemmas of families living with children who require a ventilator for their breathing.

"This study has uncovered the complex and largely invisible experiences of families with children who require assisted ventilation at home," adds Carnevale. "We now have a better understanding of what it's like to care for these children in the home, and the assistance these families require. Our findings suggest that much of the distress reported by the families was related to their encounters with health and social services systems. This calls for increased sensitivity to the needs of this population among staff in the critical care, acute and community settings. The next steps are to look at how to integrate community support services for these families to help counter the significant stress they endure."

Carnevale, an associate professor in the 捆绑SM社区 Faculty of Medicine and School of Nursing, and his colleagues studied the experiences of 12 families caring for children on assisted ventilation who had been at home for at least two years. The children's disorders were grouped into four diagnostic categories, including abnormal breathing control, neuromuscular disorders (such as muscular dystrophy), spina bifida and upper airway abnormalities. Researchers conducted interviews of the entire family, including, when age permitted, the children requiring ventilator assistance and their siblings. The findings show that although these families face many challenges and live with distress, their lives were enriched by the experience. Most families prefer their children to be at home. All of the families studied had similar experiences that can be characterized by six themes:

• increased parental responsibility (e.g., physical and emotional demands of the child);
• negative social interactions (e.g., devaluation of the child by the community);
• seeking normality (e.g., establishing routines);
• living in isolation (e.g., loneliness);
• questioning the moral order (e.g., resigning to their fate)
• listening to the voice of the child (e.g., child worried about being a burden).