We have recently been contacted by Ellen Mcnamara, a Genetic Counseling Student at the Johns Hopkins and National Human Genome Research Institute Genetic Counseling Program. This student is conducting a survey to research her thesis about the uncertainty parents face when raising a child with an undiagnosed medical condition.
For this survey, parents who have a child with a medical condition that affects at least 2 parts of the body and have been undiagnosed for at least 2 years are asked to participate.
If you might be interested in participating in this survey, please read the note below from the researcher and click the link to take the survey or learn more.
Thank you, Ellen for reaching out and giving our parents this wonderful opportunity to share their experiences.
From the Researcher:
Researchers at the National Institutes of Health and the Johns Hopkins University are seeking parents raising a child with an undiagnosed medical condition to participate in a study.
This study is being done to learn more about how parents perceive uncertainty and what factors affect this uncertainty when their child has a medical condition for which the cause remains unknown. We hope to gather more information in order to develop tools or approaches that can be used to assist parents who have a child with an undiagnosed medical condition.
We are looking for parents who have a child with a medical condition that has not been diagnosed and involves at least two parts of his or her body. You may or may not have a label for the ways your child’s body is affected (for example mental retardation OR cleft lip) but you should not have a label for your child’s overall condition.
The study consists of a survey that one parent completes. The survey should take 20-30 minutes.