Youth who face disability bias in medicine more likely to forgo care
By Louise Kinross
Children who experience disability discrimination at medical visits are more than twice as likely to forgo care later on, according to a new study in Pediatrics.
"Not receiving necessary healthcare can be harmful to children with disabilities in many ways," says lead author Dr. Stefanie Ames, a critical-care doctor at University of Utah Health. "Missed healthcare in this study can be anything from preventative care, which we know confers long-term benefits to child health in preventing disease, to necessary testing and treatments which are essential to early detection of illness and improving child health."
The study is the first "to examine exposure to disability-based discrimination in a large population of children with special health-care needs," the researchers say.
It used American data from the National Survey of Children's Health collected between 2021 and 2022.
Eleven per cent of 14 million parents said their child had been treated unfairly or judged in health care because of their medical condition or disability.
These families were more than twice as likely as those who hadn't faced discrimination to have not sought out needed medical care for their child in the past 12 months. Their children were also more likely to have made an ER visit or been hospitalized in that time period. Discrimination occurred most often against teens and those who had public insurance.
Forgone care can result from systemic discrimination, which includes inaccessible medical equipment and facilities, doctors who refuse to see a disabled child, and providers who don't accept public insurance, the researchers say.
In a 2023 Pediatrics study by the same author, parents reported three factors driving health worker disability bias: lack of knowledge about caring for children with medical complexity; negative assumptions about a disabled child's quality of life, and disinterest in working with a child deemed less valuable.
Researchers in the new study say families may avoid care after an experience of discrimination, and come to mistrust health professionals. This mistrust may have been exacerbated by discussions about rationing care for people with disabilities during COVID-19.
"Families and children who experience discrimination may lose trust in the health-care system and feel forced to choose between forgoing care or exposing themselves and their child to further biased and harmful treatment," the researchers say.
The study includes a video summary by Dr. Ames.
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