Overview
- Breakfasts may be cheaper to host than lunches (e.g., bagels, cream cheese, coffee)
- These presentations are free, but clinics/hospitals can donate honorariums to your organization
- Genetic counselors may be especially helpful to contact to learn about opportunities to present
Presentation Content
Download our template Lunch and Learn Presentation!
Introduction to Your Organization
- We offer confidential, non-directive, and trained emotional support for new and expectant parents at no charge.
- We distribute free accurate, balanced, and up-to-date educational resources about Down syndrome.
- We provide information about local resources—such as early intervention—to address social determinants of health.
- We do not provide medical advice.
Recommendations for Delivering the News
- Parents want to know what kinds of genetic screening and diagnostic tests are used, what risks are involved with each screen/test, and that prenatal screening gives a numerical score (not a “positive” or “negative” result).
- Parents want to understand different reasons for testing: advance awareness, pregnancy management, adoption, reassurance.
- The National Down Syndrome Adoption Network maintains a registry of families interested in adopting babies with Down syndrome.
- Parents want their physician to present the diagnosis, and find it most helpful when specialists work together.
- Parents value physicians sharing the news with both parents present, in a private setting or during a pre-scheduled phone conversation.
- Parents want physicians to discuss the diagnosis with neutral language and sensitivity.
- Instead of: “I have bad news” or “I’m sorry”
- Say: “I have what may be unexpected results”
- Parents want “up-to-date information about Down syndrome, its causes, and expectations for a child living with Down syndrome today.”
- National Center for Prenatal & Postnatal Resources
- National Down Syndrome Society
- Down Syndrome Diagnosis Network
- National Down Syndrome Congress
- State department of public health (Down Syndrome Information Acts)
- Parents often want access to other families who have children with Down syndrome.
Sources:
- Skotko, B. G., Kishnani, P. S., Capone, G. T., & Down Syndrome Diagnosis Study Group. (2009). Prenatal diagnosis of Down syndrome: How best to deliver the news. American journal of medical genetics Part A, 149(11), 2361-2367.
- Carroll, C., Carroll, C., Goloff, N., & Pitt, M. B. (2018). When bad news isn’t necessarily bad: recognizing provider bias when sharing unexpected news. Pediatrics, 142(1), e20180503.
- Meredith, S., Brackett, S., Diaz, K. M., Freeman, K. G., Huggins, E., Khan, H., … & Ayers, K. (2023). Recommendations to improve the patient experience and avoid bias when prenatal screening/testing. Disability and health journal, 16(2), 101401.
- Meredith, S., Weiss, S., Kleinert, H. L., & Tyrrell, C. A. (2024). The impact of implicit and explicit bias about disabilities on parent experiences and information provided during prenatal screening and testing. Disability and Health Journal, 17(1), 101514.
Life With Down Syndrome Today
- Improved Healthcare
- AVSD heart surgery success nearly 100% (Cincinnati Children’s Hospital)
- Life expectancy about 60 (Glasson et al., 2002)
- AAP Health Supervision for Children and Adolescents With Down Syndrome
(Bull et al., 2022) - Down Syndrome specialty clinics
- Benefits to Families and Siblings
- Parent benefits
- 97% of brothers/sisters, ages 9-11, said they love their sibling (Skotko, 2011)
- Siblings more compassionate, well-adjusted (Dykens, 2005)
- Early Intervention
- Free or sliding scale support, therapy, and services from birth to 3
- Center for Parent Information and Resources
- Inclusion in Schools
- Special education services available:
- therapy,
- small group,
- modifications, etc.
- Inclusion more common
- Special education services available:
- Community Inclusion
- People with Down syndrome are included in many activities such as dance, sports, arts, clubs, Special Olympics, etc.
- Post-Secondary Education and Employment
- More than 300 college programs for people with intellectual disabilities
- People with Down syndrome work as teaching assistants, artists, actors, etc.
Additional Resources for Medical Professionals
- Lettercase:
- Delivering a Diagnosis: summary of best practices for delivering a diagnosis
- Free online training modules with CEU and CME credit for medical professionals
- Free online and print resources, reviewed by representatives of the national medical and advocacy organizations, for clinicians to give expectant parents first learning about a diagnosis (available in 15 languages)
- Down Syndrome Pregnancy: Free resources for expectant parents preparing for the birth of the baby with more detailed information
- Jack’s Basket: Free “Communicating Unexpected News” curriculum with CME credit
Survey
End with QR code to a survey for providers to evaluate your presentation.
