Introduction
When referring to Black parents of children with Down syndrome in this course, we are describing parents who identify as Black, African-American, of African descent. When we refer to Hispanic parents of children with Down syndrome, we are referring to parents with ancestry from Spanish-speaking countries.
Research shows significant health disparities exist when comparing Black and Hispanic children with Down syndrome to White children with Down syndrome and more limited access to services and support.1–3
One problem is the extent to which families of color learning about a diagnosis receive the latest accessible and research-based information about Down syndrome from their medical providers. The moment of diagnosis is the first point on the life course, often described as a flashbulb memory that is remembered with vivid clarity for decades.4 That moment frames the whole experience and establishes a trajectory for understanding the condition and accessing services and healthcare.
Research shows that families of children with Down syndrome are able to cope better when they receive information about the condition in that moment; however, new and expectant parents often experience trauma when they receive limited or no additional resources or support systems during that vulnerable time.4 Parents also experience trauma when the information is exclusively negative, so they also need positive information to be included.
Therefore, it is essential that all new and expectant parents of children with DS receive accessible, understandable patient-centered outcomes research (PCOR) to make informed decisions about healthcare and to access support and services.
Take a deeper dive by listening to the results of research presented by Dr. Skotko and Albert Pless.
References:
1. Ansong EO, Jones K, Santoro SL. Timing of Referrals to a Down Syndrome Parent Group by Race. Pediatr Qual Saf. 2023;8(1):e632. doi:10.1097/pq9.0000000000000632
2. Chung J, Krell K, Pless A, et al. Healthcare experiences of patients with Down syndrome from primarily Spanish‐speaking households. Am J Med Genet A. 2023;191(8):2132-2141. doi:10.1002/ajmg.a.63250
3. Krell K, Pless A, Michael C, et al. Healthcare experiences of patients with Down syndrome who are Black, African American, of African descent, or of mixed race. Am J Med Genet A. 2023;191(3):742-752. doi:10.1002/ajmg.a.63069
4. May CP, Dein A, Ford J. New insights into the formation and duration of flashbulb memories: Evidence from medical diagnosis memories. Appl Cogn Psychol. 2020;34(5):1154-1165. doi:10.1002/acp.3704