Discrimination in Health Care Against Children With Medical Complexity and Caregiver Mental Health

Discrimination in health care settings negatively impacts adult health and well-being; however, it is not well studied in pediatrics. This study aimed to evaluate discrimination in medical settings in a multi-site cohort and examine its association with caregiver mental health.

This cross-sectional study used survey responses from 718 caregiver-child dyads from 9 academic medical centers participating in the Family CIRCLE cohort. Eligibility criteria included age younger than 16 years and at least 1 complex chronic condition and at least 2 health care encounters in the prior year. The primary exposure was the Discrimination in Medical Settings (DMS) Scale adapted for child health with higher scores indicating more discrimination. The primary outcome was self-perceived caregiver mental health. Responses were dichotomized into favorable (excellent, very good, good) and unfavorable (fair, poor) categories. Multivariate logistic regression models estimated the association between DMS responses and unfavorable mental health.

Of 673 caregivers who completed at least 1 DMS question, 401 (59.6%) reported experiencing some discrimination. The median (IQR) discrimination score was 9 (7-14, range: 7-28). Compared with caregivers of children without a disability, caregivers of children with disabilities reported more discrimination (P < .001). In a multivariable model adjusting for child and caregiver characteristics, DMS scores in the highest quartile (vs the lowest) had higher odds of unfavorable caregiver mental health (adjusted odds ratio: 2.5 [95% CI: 1.5-4.1]).

Discrimination in medical settings was reported by 60% of caregivers of children with medical complexity and was associated with increased odds of unfavorable caregiver mental health. Future efforts should address discrimination to improve health systems.