How to Support Black & Hispanic Parents of Children with Down Syndrome
Pictured: Mother and child with Down syndrome
By Stephanie Meredith, DrPH University of Kentucky Human Development Institute, Nicholas Lamar Wright, PhD University of Kentucky Human Development Institute
Abstract
Research shows significant health disparities exist when comparing Black and Hispanic children with Down syndrome (DS) to White children with DS, including decreased access to services and support.1,2 To improve dissemination strategies for Patient-Centered Outcomes Research (PCOR) findings to Black and Hispanic parents learning about a DS diagnosis, we conducted online community conversations with 10 Black and 10 Hispanic parents of children with DS across the United States (US). In addition to conversations with parents, we connected with six local advocacy organization leaders, five health equity experts, and five medical experts from different disciplines. The work groups collaboratively determined eight primary recommendations, accompanied by specific implementation strategies, for medical professionals to promote health equity by improving the dissemination of research to Black and Hispanic parents of children with DS receiving diagnosis results. Many of the suggestions focus on improving the provision of support and critical services, avoiding racial and disability bias in diagnosis conversations, and seeking to improve the representation of racially diverse populations in the healthcare workforce. To address health disparities faced by Black and Hispanic parents of children with DS, medical professionals and organizations are encouraged to braid these recommendations into standard practice.
Key Words: Disabilities; Black; Hispanic; Down Syndrome; Equity
Introduction
When our team concluded a study in 2022 on the experiences of parents following prenatal screening and testing for Down syndrome, we were very concerned to find that only 4 of the 242 respondents were Black—a common occurrence in Down syndrome research. This was particularly worrisome given that research shows significant health disparities exist when comparing Black and Hispanic children with Down Syndrome (DS) to White children with DS and more limited access to services and support.1–3 We knew that families of color reported that they were not always receiving the latest accessible and research-based information from their medical providers when learning about a DS diagnosis.1–3 We also knew that 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 in health care, and we didn’t want our families of color to be left out.4 This led us to construct a different project, with the support of the Patient Centered Outcomes Research Institute, to purposefully engage in community conversations with Black and Hispanic parents of children with Down syndrome to find out how we could better support them and provide the information and patient-centered outcomes research (PCOR) findings that matter the most to them.
Pictured: Family walking with son with Down syndrome
Conversations
To develop recommendations for disseminating PCOR findings to new and expectant parents of children with DS learning about a diagnosis, we first had to build coalitions between patient advocacy leaders, health equity experts, medical professionals, and Black and Hispanic parents of children with DS. We accomplished this by working alongside local Down syndrome organizations to identify Black and Hispanic parents who would be interested in participating and holding online community conversations to gather their input.5 All participants were mothers and also equitably compensated for their time at $125 per hour.
During the 8-hour online Parent/Advocacy Team meeting, participants provided input about their preferences for receiving information about PCOR during small group breakout sessions focused on eight discussion topics. Next, health equity experts developed recommendations based on the feedback from the parents in the context of social justice issues encountered by people with disabilities and Black and Hispanic families. Finally, the medical team discussed the feedback from the other groups to identify how those recommendations could be braided into strategies, platforms, and formats to improve the dissemination of the latest health research to our target population, new and expectant Black and Hispanic parents of children with DS.
Results
Below are the results from the eight rounds of rich and deep conversations as we discussed different topics in each round.
Discussion
The results showed a clear overlap in some areas and distinct and nuanced differences in others for these two populations of new and expectant mothers of children with DS, and the parents unanimously agreed that this was a meaningful experience for them and effective use of time where they felt valued and produced important results.
More Training on Information Delivery
Both groups of Black and Hispanic mothers receiving a diagnosis wanted a thorough understanding of DS and learn about available resources, such as parent advocacy groups. Medical providers' delivery of information was highlighted by both groups, and participants wanted a more sensitive discussion with less negative bias. Both groups felt that clinicians needed more training on delivering this information equitably and sensitively. While there was a difference in the exact resources wanted by these two populations, both populations felt the resources given were insignificant. Information regarding a diagnosis of DS should be delivered in a supportive and sensitive manner, and the doctor should be prepared to answer all questions the family has (Buyukavc et al., 2019). Unfortunately, research shows that experienced medical providers discuss they did not receive proper education on how to deliver this diagnosis sensitively (Ralston, 2000). When asked if the parents had any further recommendations at the end of the interview, Black mothers emphasized the need for additional provider training. Both groups stated that more accurate, current, and PCOR findings must be shared.
Pictured: Family sitting with child with Down syndrome
Cultural Concerns in Communication
Black and Hispanic new and expectant mothers of children with DS have distinct differences. Although differences exist, both had concerns about a lack of cultural competence impacting communication and being a barrier to the way they receive information. Cultural competence in health care describes the social and cultural influence on health beliefs, behaviors, and factors to ensure quality health care and delivery systems (Kaihlanen et al., 2019). Both Black and Hispanic mothers mentioned a language barrier between them and the medical providers. Black individuals mentioned that the medical jargon was difficult to understand. This made it difficult to navigate the complex medical system. Hispanic mothers had a similar problem with communication and mentioned that parents need information and PCOR findings in their native language. Communication is not just about delivery, but also about receiving information. Without an effective delivery and a clear understanding of the information being delivered, communication is unsuccessful. Both parties mentioned that this barrier could be removed if there was better representation, more professional training, and if the information was delivered in a language they understood.
Lack of Representation
Similar identities lead to cultural understanding, confidence, and trust. Representation truly matters and encourages people to feel comfortable. Both the Black and the Hispanic mothers mentioned that there was a lack of representation in their experiences. The Black and Hispanic mothers focused on a lack of representation in the medical staff and literature. They did not see or talk with medical providers who shared similar identities as them, which disrupted communication. Not only did they not see their identities in the medical providers, but they were often not provided with literature that reflected their identities. This discouraged families, making it seem like this information was not for them. Not having their identities represented made them less receptive to the information and research findings. Media information must be more representative, and additional efforts must be made to increase the underrepresented populations of both Black and Hispanic professionals in health care and advocacy organizations (Salsberg et al., 2021).
Effective Use of Digital Media
For Black and Hispanic parents to get information, we must reach them where they are. Both Black and Hispanic mothers stated that social media is an effective way for them to receive research about DS, specifically mentioning Facebook, TikTok, and YouTube. Research findings shared in this way allow providers to take advantage of technological resources and online access. Social media is an ideal way to share resources effectively, while also providing community outreach. Both groups mentioned phone calls, text messages, and emails as reliable methods to communicate. The Hispanic group discussed receiving information via printed brochures and WhatsApp as well.
Community and Family Outreach
Both the Black and the Hispanic mothers mentioned that community outreach was vital to sharing research findings and DS organizations and also supporting the whole family. Both stated information could be distributed in churches, schools, clinics, hospitals, and therapy centers. Broad community outreach empowers community members to support families of children with DS. Outreach with an educational focus improves outcomes for mothers, families, and communities leading to more community engagement.
The Whole Picture (Good & Bad)
Both Black and Hispanic mothers disclosed they were not given all the information about the diagnosis. Mothers continued to feel only one side was being told. Both groups mentioned the medical providers were only describing the negatives and did not discuss the potential for positive outcomes. These mothers wanted to learn all available options so they could decide on the best course of action. Both groups mentioned it was not just about the information being said, but how it was being said. These mothers mentioned the information was delivered in a negative tone and the diagnosis delivery had no compassion. They felt the diagnosis delivery would be better with improved training of clinicians, informed by a family or an advocacy perspective.
Pictured: Child with Down syndrome coloring with a friend
Positive Life Outcomes
This data collected highlights that Black and Hispanic new and expectant mothers of children with DS care most about research topics on the impact of social supports and factors influencing positive life outcomes. Both sets of mothers cared most about research related to breastfeeding and the value of parent support. The Black population specifically wanted to learn more about diversifying the research data, such as single vs. married parents and social outcomes based on access to support services. The Hispanic participants wanted additional research on the value of different early intervention strategies.
Implications
Recommendations for Medical Professionals
The ability to share research findings with any parent of a child with DS or other disabilities, particularly parents from diverse racial backgrounds who have faced additional discrimination, is to develop relationships of trust from the moment of diagnosis. This is vital given these populations' increased health and social needs. Consequently, the following eight recommendations, developed between the parent, health equity, and medical teams on this project, are essential for establishing those relationships of trust and providing research-based information on the spectrum of social and health outcomes from the first point on the life course:
Provide clinical training on how to sensitively deliver a diagnosis and avoid racial/disability bias via workshops, training, guidelines, and education.
Communicate with sensitivity, discuss prenatal testing and reproductive options, and provide balanced information about DS using compassionate care and plain language.
Make referrals, coordinate care, and offer different clinic models to address the information and support needs of new and expectant parents, including telehealth options like DSC2U and referral lists of specialists.
Provide patient resources/education at the moment of diagnosis in multiple formats.
Make connections to local and national parent support organizations and note those with racial affinity groups.
Make racial and ethnic representation a priority in the medical workforce.
Follow up with patients after the diagnosis.
Advocate for equity such as better genetic counselor access and more research on health disparities experienced by people with disabilities from different racial identities.
Specific implementation strategies can be found in the online white paper for medical professionals and the online learning module.
Conclusion
Our hope with this work is that clinicians will take these recommendations from parents and professionals to make sure that families of color who have children with Down syndrome are getting the resources they need to thrive by making informed treatment decisions based on research; accessing the most effective support systems and information; addressing social determinants of health; and establishing relationships with providers who have built their trust.
About the authors
Stephanie Meredith, DrPH serves as the Director of the Lettercase National Center for Prenatal and Postnatal Resources at the University of Kentucky’s Human Development Institute in Lexington, Kentucky. Dr. Meredith is the mother of a 24-year-old with Down syndrome, publishes patient education resources about disabilities, and conducts research surrounding diagnosis experiences and prenatal ethics.
Nicholas Lamar Wright, Ph.D. serves as the Director of Diversity, Equity, & Inclusion for the Human Development Institute at the University of Kentucky in Lexington, Kentucky. Dr. Wright identifies as an individual with a disability and has published qualitative research in the Journal of College Student Development, Genealogy, and various chapters in academic literature focused on multiraciality, sense of belonging, and disability.
Acknowledgment
This project was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EADI-24186). The views, statements, and opinions presented in this publication are solely the responsibility of the author(s) and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors, or Methodology Committee.
References
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2. Chung J, Krell K, Pless A, et al. Healthcare experiences of patients with Down syndrome from primarily Spanish‐speaking households. American J of Med Genetics Pt A. 2023;191(8):2132-2141. doi:10.1002/ajmg.a.63250
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