Problem behaviors beset kids with cystic fibrosis

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Children with cystic fibrosis, or CF, often have problems with sleeping, eating and complying with the physiotherapy they need, a new study shows.

These problem behaviors “may adversely affect health outcomes in children with CF,” Dr. Christopher Richard Ward, of Royal Children’s Hospital, Parkville, Australia, and colleagues write in the Archives of Disease in Childhood.

Cystic fibrosis is a genetic disorder in which thick secretions build up in the lungs, making it difficult to breath. Infections also often set in, despite frequent physical therapy to try to clear the secretions.

The researchers surveyed 117 families of children with CF between the ages of 6 months and 5 years. The kids’ caregivers reported sleeping problems (mild to severe) in 53 percent of the children and eating problem behaviors in 40 percent—higher rates than normal. Adherence to physiotherapy was a problem in 50 percent of children.

The investigators also assessed the mental health of the caregivers. Overall, 33 percent of them reported symptoms indicating depression. Anxiety and stress were reported by 16 percent and 34 percent, respectively.

More than a third of caregivers (37 percent) reported “fairly bad” or “very bad” sleep quality.

The management of children with CF needs a multi-pronged approach “encompassing patient and family well-being and appropriate referral for caregiver mental health and parenting assistance,” the authors conclude. “Future research should focus on a parenting intervention to prevent or treat the common problems identified in this study.”

SOURCE: Archives of Disease in Childhood, May 2009.

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