Dr. Stephanie Meredith is the Director of the Lettercase National Center for Prenatal and Postnatal Resources at the University of Kentucky’s Human Development Institute (HDI) and the mother of a young man with Down syndrome. Her identity as a parent gave her particular access and understanding of the family experience after learning about a diagnosis. Dr. Nicholas Wright is a multiracial man who serves as Director of DEI at HDI and has a traumatic brain injury.
“We were both worried about leading this work because we both have ways in which we’re similar and different from Black and Hispanic mothers of children with Down syndrome. We were so grateful that as we started the conversations with the 20 parents who participated in this project, they were generous in sharing their thoughts and insights about what types of research were important to them and how to improve the systems.In fact, when we asked the first question about their research priorities, they were so eager to talk about their thoughts on the diagnosis experience that we had to repeat the question to gather all their important insights.”
“At the risk of being vulnerable and emotional, their willingness to share felt sacred, and they correspondingly expressed that they appreciated the opportunity to offer those insights. We were also grateful to our health equity and medical professional teams for sharing their unique insights and for being wonderful professionals who are committed to helping families.”
Many Thanks
We want to thank our team of 36 parent and professional reviewers who made this resource possible and gave their excellent input!
Angela Trepanier, MS, CGC, Professor, Center for Molecular Medicine and Genetics, Wayne State University, School of Medicine
Asha N. Talati MD MSCR, Assistant Professor of Maternal Fetal Medicine and Clinical Genetics and Genomics at the University of North Carolina Chapel Hill
Beth A. Pletcher, MD, FAAP, FACMG, Emeritus Professor, Rutgers New Jersey Medical School, Emeritus Professor, Rutgers New Jersey Medical School
Brian Skotko, MD, MPP, Emma Campbell Endowed Chair on Down Syndrome, Massachusetts General Hospital
Dena Cherry-Brown, MPH, Health Equity Reviewer
Evelyn J. Acevedo, Parent Facilitator for Club21, Former Early Childhood Educator, Inclusion Leadership Team Member for local preschool program (IEEEP), and Parent Reviewer
Jennifer de la Cruz, MMSc, PA-C, Health Equity Reviewer
Jessica L. Franks, DrPH, MPH, CHES, Health Equity Reviewer
Julianna Cebollero, PharmD, BCOP, Parent Reviewer
Linda Smarto, Executive Director from the National Association for Down Syndrome
Sarah Cullen, Family Support Director at the Massachusetts Down Syndrome Congress and the National Parents First Call Center
Sharon Tate, Parent Reviewer
Tawana Williams, Parent Reviewer
Terria Brown, First Call Program Leader, Down Syndrome Association of Maryland, Parent Reviewer
We’d also like to thank our student LEND trainees who assisted in preparing this resource: Cameron Elder (currently pursuing a Doctorate in Physical Therapy) and Hannah Keene, MS (currently pursuing a Doctorate in Early Childhood, Special Education, and Counselor Education).
Use this space to continue our conversation on Tips and Tricks for Training Planning, so that we support each other in this work. Ask/answer questions, share successes and challenges, and respond to each other!
(If you have any trouble posting, email your questions to julie.halitzka@uky.edu, and we will post for you.)
Studies show that there are specific research questions and information that are valued more by Black and Hispanic parents, and there is research that is universally valued by all parents of children with Down syndrome. The list below highlights these questions.
Note: You must watch the entire video to continue through the course.
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Top PCOR 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 organizations.
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
Yes3Parents 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.
Person Testimonies:
Listening to Individuals and Families
The Diaz Family
Learn from families about what matters most to them at the moment of diagnosis in this video from Boston Children’s about the Diaz family:
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
5. Carter EW, Bumble JL. The promise and possibilities of community conversations: Expanding opportunities for people with disabilities. J Disabil Policy Stud. 2018;28(4):195-202. doi:10.1177/1044207317739408
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, in addition to more limited access to services and support.1–3
One problem is the extent to which parents 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.
“Yes, in relation to the doctors, really, they are the ones who give you the news, they give you the diagnosis. Yes, they should be more steeped in the topic. Because badly handled news affects mothers a lot.” —Spanish-speaking caregiver
Therefore, it is essential that all new and expectant parents of children with Down syndrome receive accessible, understandable patient-centered outcomes research (PCOR) to make informed decisions about healthcare and to access support and services.
Listen to Dr. Brian Skotko and Albert Pless, MA lead a discussion about their project regarding the experiences of Black and Hispanic parents of individuals with Down syndrome also funded by the Patient Centered-Outcomes Research. We will reference this video throughout the course. Here they provide background on the health disparities faced by these parents. They also discuss the importance of the diagnosis moment.
Note: You must watch the entire video to continue through the course.
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Personal Testimonies:
Listening to Individuals and Families
Sofia Jirau and Chris Gonzalez
Watch this video to learn more about Hispanic adults thriving with Down syndrome and how to approach Down syndrome with open expectations:
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
Congratulations! You have completed Budget Approvals and Set-Up. This course is part of a series of training required for Fiduciary staff. Once you mark this lesson complete, you will have access to your certificate of completion and will be granted access to the next course.
Budgets may periodically need to be updated or renewed due to changes in income or expenses. Let’s review the responsibilities of Fiduciary staff when updating or renewing a budget.
