Impact of disability-based discrimination in healthcare on parents of children with medical complexity.
Stefanie G Ames, Rebecca K Delaney, Claudia Delgado-Corcoran and 4 others
PMID 38327250WHAT IT FOUND
Parents of children with medical complexity reported that disability-based discrimination in healthcare erodes trust, increases caregiving burden through forced advocacy, and harms parental mental health.
Racism and poverty-based discrimination compound these effects.
Key findings
01Perceived discrimination leads to a loss of trust in healthcare providers, often requiring parents to seek new providers or advocate aggressively to ensure appropriate care.
02Discrimination increases the burden of caregiving, specifically through 'forced advocacy' where parents feel they must fight daily to get their child proper care.
03Racism and poverty-based discrimination amplify the impact of disability-based discrimination, with parents reporting worse treatment when providers learned of Medicaid insurance or racial identity.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
Participants were recruited specifically because they reported experiencing discrimination, so the findings describe the experiences of this selected group and may not represent all parents of children with medical complexity. The study was conducted in the USA, so findings may not be transferable to other healthcare systems or cultural contexts. The sample was primarily female (83%) and White (70%), which may limit the generalizability of findings regarding gender and racial diversity.
Declared interests
The authors declared no conflicts of interest.
The easy way to misread this
Do not interpret these findings as evidence that discrimination is universal among parents of children with medical complexity. The study specifically recruited parents who reported perceiving discrimination, so it describes the impact of that experience, not its prevalence.