A Johns Hopkins Children's Center study reveals that caring for a chronically ill child can be a positive experience for many mothers and families.

The study, reported in this month's Ambulatory Pediatrics, found that most mothers felt better about themselves after learning to manage their children's condition. Mothers reported stronger family bonds, better communication between family members, and increased awareness of their children's needs.

Lead author Robin Chernoff, M.D., and her colleagues asked 190 mothers of various races at different income and educational levels to assess their positive feelings about caring for their chronically ill children. The children, ages 7 to 12, had sickle cell disease, diabetes, cystic fibrosis, or moderate to severe asthma. Each mother was given the opportunity to list ways her family had benefitted from raising a child with a chronic illness. Each comment was grouped into one of 10 categories, such as whether the illness brought the family closer, helped the family cope with challenges, helped the family communicate more, or made family members more aware of spiritual values.

Seventy percent of mothers reported that "their families were stronger because of their child's condition," and 80 percent said their families "had benefitted in some way from having a child with chronic illness." Mothers reported other benefits of raising a chronically ill child, such as better parenting skills, greater self-awareness, increased awareness of family members' needs, greater sensitivity and tolerance, confidence and emotional stability.

"While working with families of chronically ill children, we realized lots of parents were saying positive things about caring for their children," Chernoff says. "We really just wanted a chance to ask the question, 'In what ways are things going well?'"

Chernoff, assistant professor of pediatrics at the Children's Center and a specialist in behavioral and developmental pediatrics, hopes that knowledge of the rewards of parenting a chronically ill child will help broaden health care professionals' understanding of the home environment and ultimately lead to improved patient care. "As doctors we are skilled at asking about problems that arise from living with a chronically ill child," Chernoff says. "This study points out the importance of recognizing and asking about the positive impacts of the experience as well."

Researchers from the Johns Hopkins School of Hygiene and Public Health also contributed to the report. It was funded by a grant from the Department of Health and Human Services' Maternal and Child Health Bureau.

---Johns Hopkins

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