Many women and families choose prenatal testing to prepare for a child that may have a genetic condition like Down syndrome. And many health care providers and patient support groups do all they can to help parents prepare for the birth of a wanted child who may have special needs at birth and beyond. But when these different people say the word “preparation,” do they all mean the same thing?
It may surprise you to learn that even for Down syndrome, the condition most commonly tested for during pregnancy, there are no standard clinical recommendations for how to “prepare” for a birth and a child with the condition. And local patient groups may have different ideas than clinicians about how to help parents prepare–and funding and other resources for these groups vary widely from place to place. How can we know whether clinicians and patient groups are meeting the needs of parents?
The first step is to find out what all these different groups mean by “preparation,” what kinds of activities or resources they think are important, and how these different ideas and activities play out at the local level. This is the goal of the PREPARE study, which is currently in its planning stages. For more information about the PREPARE study, click here.