Children with disabilities, and their families, may face discrimination in in the hospitals and clinics they visit for their healthcare, according to a new study led by researchers at University of Utah Health. These attitudes may lead to substandard medical treatment, which could contribute to poor health outcomes, say the study’s authors.
The findings, published in the journal Pediatrics, are based on 30 in-depth interviews with family caregivers living in 15 states in the U.S. The children they looked after had medically complex conditions, with most needing healthcare more than 20 times each year. While the study did not measure how common it is for clinicians to show bias against children with disability, it exposes a serious problem that needs to be addressed, says lead author Stefanie Ames, M.D., a critical care physician at U of U Health.
Analysis of interviews with caregivers identified six recurring reasons for, and consequences of, healthcare provider bias against children with disability and complex medical conditions.
Family caregivers perceived that the main drivers of discrimination were:
- A lack of knowledge of how to care for children with complex medical needs
- A lack of interest in providing healthcare or medical interventions based on a perception that the child may not be worthy of care
- Negative assumptions based on the child’s disability and quality of life
The interviews revealed that family caregivers felt that discrimination resulted in:
- Limited accommodations, for example for wheelchairs, making it difficult for children and their families to access healthcare
- Clinicians not providing the same healthcare and medical treatments to children with disabilities as they would for those without disabilities
- Clinicians dehumanizing children with disability and treating them differently than they would typically developing children
According to family caregivers, these attitudes, at times, impacted patient care. One said that a doctor recommended against treating her daughter’s cancer despite there being a high chance of success that the treatment would work. Another parent indicated that healthcare providers did not give her child adequate pain relievers before carrying out an uncomfortable medical procedure.