Top PCOR Research Questions Valued by Black and Hispanic Families
Studies show that there are specific research questions and information that are valued more by Black and Hispanic parents and those that are universally valued by all parents of children with Down Syndrome. The table below highlights these questions.
Top PCOR Research Questions Valued by Black and Hispanic Families:
| Research Priorities for All Parents of Children with DS | Research Priorities for Black and Hispanic Parents of Children with DS | |
| Benefits and drawbacks of different prenatal testing/screening options | Yes1 | Yes: Black parents raised concerns about possibly receiving less information about prenatal screening options than White counterparts. |
| Benefits and drawbacks of different treatments for common medical issues experienced by people with DS (such as heart defects, gastrointestinal defects, etc.) | Yes1 | Yes |
| Impact of prenatal care and insurance coverage options on miscarriage and stillbirth rate | Yes: Black mothers noted specific concerns about higher rates of maternal morbidity and mortality during pregnancy, and Hispanic mothers who were recent immigrants noted concerns about insurance coverage. | |
| Benefits and drawbacks of different feeding strategies, like breastfeeding, pumping, formula-feeding, and supplementing, and methods to optimize feeding and weight gain in children with DS | Yes2 | Yes: Black mothers noted specific concerns about historic discrimination in breastfeeding. |
| Impacts of different social determinants of health on short and long-term outcomes for people with DS. | Yes3 | Yes: Hispanic parents, particularly among those of lower socioeconomic status, raised concerns about health insurance options. Black parents raised specific concerns about the impact of marital status. |
| Impact of early connection to parent support and advocacy groups on all members of the family (including mother, father, siblings) | Yes4,5 | Yes: Black and Hispanic parents wanted additional information about the long-term impact of racially and ethnically concordant sub-groups within local DS organization |
| Outcomes and potential benefits of peer mentors and DS organizations and available supports at the moment of diagnosis | Yes1 | Yes: Black and Hispanic parents added specific focus on peer mentors with racial and ethnic concordancy. |
| Best treatment options for psychological support and counseling for parents following a DS diagnosis | Yes5 | Yes |
| Impacts of different early intervention strategies on meeting developmental milestones and long-term outcomes | Yes1 | Yes |
| Benefits and drawbacks of raising a child with DS to be bilingual, including sign language | Yes3 Parents of children generally express they want this information about sign language instruction. | Yes: Hispanic parents who are bilingual or Spanish-speaking specifically expressed an interest in this information. |
The Lucky Few Podcast focusing on “More Than A Moment,” w/Kelli Caughman: https://www.theluckyfewpodcast.com/episodes/ep102-kellicaughman
References:
- Sheets KB, Best RG, Brasington CK, Will MC. Balanced information about Down syndrome: What is essential? Am J Med Genet. 2011;155(6):1246-1257. doi:10.1002/ajmg.a.34018
- Barros Da Silva R, Barbieri-Figueiredo MDC, Van Riper M. Breastfeeding Experiences of Mothers of Children with Down Syndrome. Comprehensive Child and Adolescent Nursing. 2019;42(4):250-264. doi:10.1080/24694193.2018.1496493
- Levis DM, Harris S, Whitehead N, Moultrie R, Duwe K, Rasmussen SA. Women’s knowledge, attitudes, and beliefs about Down syndrome: A qualitative research study. Am J Med Genet. 2012;158A(6):1355-1362. doi:10.1002/ajmg.a.35340
- Ansong EO, Jones K, Santoro SL. Timing of Referrals to a Down Syndrome Parent Group by Race. Pediatric Quality & Safety. 2023;8(1):e632. doi:10.1097/pq9.0000000000000632
- Riggan KA, Close S, Allyse MA. Family experiences and attitudes about receiving the diagnosis of sex chromosome aneuploidy in a child. American J of Med Genetics Pt C. 2020;184(2):404-413. doi:10.1002/ajmg.c.31781