Delivering a Diagnosis
You are where the story starts.
Receiving a new, unexpected Down syndrome diagnosis can be life-changing for a family, and it can come with a wide range of raw emotions including an overwhelming fear of the unknown.
With your knowledge and with your dedication as healthcare providers, you have the opportunity to meet families where they are at, validate their emotions, and help guide them through the initial steps in their journey. You are where the story starts!
When bad news isn't necessarily bad.
7 strategies for reframing the "breaking bad" news paradigm.
1.
Recognize that your words and conversation will be a part of the family’s story forever – take that role seriously and consider how the family will retell this moment for years to come.
2.
Remember to congratulate the family on their pregnancy or on the birth of their child; encourage them and others to celebrate their baby.
3.
Avoid framing the news as “I have bad news” – this reflects your possible bias and may forever frame their child in that paradigm; consider phrases such as, “I have some news which may be unexpected.”
4.
Offer hope that while it may not be what was expected, their child will be able to bring their family joy.
5.
Provide expectations of what may need to happen in the short term (e.g. additional testing, follow up) but avoid a laundry list of potential outcomes.
6.
Check the pulse of the conversation and meet families where they are; avoid the urge to be solely a pep talker or positive-spinner while offering encouragement.
7.
Offer resources and connect them to families raising children with the same diagnosis when possible.
7 Strategies Article
These seven strategies are based on our article, “When Bad News Isn’t Necessarily Bad: Recognizing Provider Bias When Sharing Unexpected News” our purpose is to shine a light on an important lesson for providers: that often we bring our own biases to the table when we frame news as “bad” when ultimately, from a family’s perspective, it may not be bad at all.
Prenatal Consult Film
This resource is designed for healthcare providers to share with expectant parents following a prenatal diagnosis of Down syndrome. This video features perspectives from both providers and parents of children with Down syndrome with the goal to shed light on some of the ‘unknowns’ that families may face when receiving a prenatal Down syndrome diagnosis, encourage expectant parents with stories and experiences from other families who are raising a child with Down syndrome, and to most importantly offer hope for their journey ahead.
"We can shed light on some of the dark unknowns and be a steadfast presence as families navigate the new landscape of their lives. I want providers to remember that we are not perfect. We will not always get it right. But we can keep trying. As we aspire to be the best version of ourselves, we can be gracious with ourselves as we do our best to help our patients and their families."
