Child and Parent Health Tend to be Worse When a Child Has Special Health Care Needs

• More than half of Chicago parents with children who have special health care needs reported having at least one child in worse health
• Chicago parents with children who have special health care needs were more likely to be in worse health themselves than other parents (62 percent vs. 46 percent) 
• Psychological distress was more common among parents with children who have special health care needs, compared to other parents in Chicago (22 percent vs. 9 percent)

 In Chicago, 7 percent of parents said that their child or children were limited or prevented in their ability to do things most peers can do, according to the latest survey results released by Ann & Robert H. Lurie Children’s Hospital of Chicago and the Chicago Department of Public Health (CDPH). Researchers define this group of children as having “special health care needs,” which includes a range of conditions from asthma to more debilitating disorders like muscular dystrophy. Parents who had at least one child with special health care needs were also more likely to have a child who was in worse health. Additionally, parents of children with special health care needs were more likely to be in worse health themselves and to experience psychological distress.

“Our findings, which are consistent with other research, underscore the substantial physical and emotional toll on families with children who have special health care needs,” says Matthew M. Davis, MD, MAPP, Interim Chair of Pediatrics and Chief of Community Health Transformation at Lurie Children’s, and Professor of Pediatrics, Medicine, Medical Social Sciences, and Preventive Medicine at Northwestern University Feinberg School of Medicine. “Many studies have shown that increasing access to care coordination for these families reduces financial problems, leads to better health outcomes for the child and improves overall family functioning. Our results highlight the importance of caring for the entire family when a child has special health care needs. We need to work together within the medical community and with other organizations to help lift the multiple burdens these families face.”

Survey results are based on the second wave of data collected through the Healthy Chicago Survey, Jr. (2018-19), that was developed by Dr. Davis in collaboration with the CDPH Office of Epidemiology and Research. Phone interviews were conducted with 2,982 adults, including 740 parents, December 2018 through May 2019. Households across Chicago were randomly selected, with participants in all 77 community areas.

To share the survey results, Dr. Davis and his team at Lurie Children’s launched “Voices of Child Health in Chicago,” a research program focused on bringing the perspectives of Chicagoans to inform dialogue and action about child health in the city. On a regular basis, data briefs are issued that report on a wide range of survey result topics that affect youth health.

Population-focused child health research at Ann & Robert H. Lurie Children’s Hospital of Chicago is conducted through the Mary Ann & J. Milburn Smith Child Health Research, Outreach, and Advocacy Center at the Stanley Manne Children’s Research Institute. The Manne Research Institute is focused on improving child health, transforming pediatric medicine and ensuring healthier futures through the relentless pursuit of new knowledge. Lurie Children’s is ranked as one of the nation’s top children’s hospitals in the U.S. News & World Report. It is the pediatric training ground for Northwestern University Feinberg School of Medicine. Last year, the hospital served more than 220,000 children from 48 states and 49 countries.

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