What Were You Told About Cerebral Palsy?

Parents of babies treated in a NICU learn that their baby has a “Brain Problem” earlier than many others who only realize that there is a problem when their child shows significant developmental delays. I am part of an important survey to find out from parents, what they were told and when.

crystal-ball

https://www.surveymonkey.com/r/CP_parents

When I was a practicing neonatologist, I often wished that there was a magic crystal ball that would reveal the future for an individual child. Unfortunately, most doctors have to learn how to break bad news on their own. Believe it or not, there are now courses for both doctors and nurses in how to break bad news, but most of them concern a cancer diagnosis or dementia in Alzheimer’s Disease. Led by NICU nursing organizations, there is now more attention given to these difficult “family meeting” conversations.

In the case of an abnormality on an early brain scan, there are so many unanswered questions and considerable confusion in the field. The first step to improving this area is to find out the personal stories from as many parents as possible. What were you told and when? What has happened since that meeting?

We plan to publish the results of the survey with the hopes of getting timely, accurate information to parents in the NICU about brain injury and earlier treatment for infants “at risk” of cerebral palsy.

The survey is completely confidential, you can stop answering at any point and it should take about 10 minutes to complete. Please contact me if you have any questions about the survey. Thank you for your help.

https://www.surveymonkey.com/r/CP_parents

You can email me here: kep@karenpapemd.com

 



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