Alissa Latiff, Taryn Eickmeier, Meghann Lloyd
The experiences of racialized parents of children with disabilities are complex, their broader life experiences affect the way they approach pediatric rehabilitation, and they may be experiencing a "double burden" effect.
PURPOSE: Within the pediatric rehabilitation context, there is the lack of data in the peer reviewed literature on the intersection of race and disability. The purpose of this research was to explore the intersection of race and disability and the role it plays when parents are accessing and receiving pediatric rehabilitation services for their children with disabilities in Ontario, Canada.
METHODS: A multiple descriptive qualitative case study design was used. Three semi-structured interview guides were developed, and three interviews were conducted for each case, resulting in a total of nine interviews. An inductive approach was used to generate themes and data were analyzed using both within-case and cross case analyses. Intersectional and DisCrit theories informed data collection, analysis, and interpretation.
RESULTS: A total of three cases were studied. Case analysis results identified four themes for barriers to accessing services for racialized parents of children with disabilities. Parents described experiencing ableism from their cultural communities and challenges receiving a formal diagnosis. Findings also highlighted the need for diverse service providers and a desire for cultural support groups to increase comfort and belonging. At the intersection of race and disability racialized parents who have children with disabilities may be experiencing a "double burden" effect navigating compounding effects of oppression in multiple areas of their lives.
CONCLUSIONS: The experiences of racialized parents of children with disabilities are complex, their broader life experiences affect the way they approach pediatric rehabilitation, and they may be experiencing a "double burden" effect.