MAKE A DIFFERENCE IN THE WAY YOU DELIVER THE DIAGNOSIS
The patient will never forget receiving this diagnosis
Research has repeatedly shown that mothers recall receiving the diagnosis in specific, photographic detail, even decades later. Dr. Skotko described the delivery of a Down syndrome diagnosis as a “flashbulb moment” for the patient.
You only get one chance in the face of the patient – so do it right !
Fortunately there are Best Practice Guidelines – developed based on survey ing patient experiences and what aspects correlated with a positive experience.
BEST PRACTICE GUIDELINES FOR DELIVERING THE DIAGNOSIS
Delivering the postnatal diagnosis of Down syndrome – pediatrics
Prenatal guidelines for delivery of diagnosis – America Journal Medical Genetics
MEDICAL PROFESSIONAL RESOURCES FOR ONLINE WORKSHOPS ON DELIVERING DIAGNOSIS
FIRST CALL PROGRAM
The Down Syndrome Association of Central New Jersey is here to help you help your patients. As a physician you may feel you need to be at the forefront of supporting your patients. The greatest support you can provide them at this time is a referral to a parent support network – people who can relay a realistic, accurate and fully informed perspective on what it is like to raise a child with Down Syndrome – the joys and challenges.
Parents should be connected with our organization as part of the decision making process and with in 24 hours of receiving a diagnosis – NOT only after they have decided on how they are going to proceed with their pregnancy.
Our first call program eliminates a barrier for parents in the turmoil of processing some unexpected news!! OUr First Call parents are especially trained to never ask about what the family is considering with regards to their decision for their pregnancy – we are here to support families at whatever stage they are at. We will just answer question and invite them to meet our families.
Anyone in your office, physician, nurse, support staff, can simply inform the patient that you can assist with connecting them with a First Call parent with a signature on the release form.
Then the information can be either emailed or called in to our organization. No medical information should be released. Only the parent contact information.
Forms can be downloaded below.