Children and adolescents with LDS that have previously had cardiac surgery are invited to participate in a pilot research study that is being conducted by Gretchen Oswald and Laura Hutchins, a genetic counseling student from the University of Maryland.
This study aims to directly survey children and adolescents with LDS that have already had preventative cardiac surgery to begin compiling information about their experiences and feelings about the surgery and hospitalization afterwards. With the information we gather from this study, written preparatory materials will be developed for children and adolescents that are scheduled for the surgery, in order to better prepare them and their families.
The study consists of an online survey which will take approximately 60 to 90 minutes for each child or adolescent to complete, at his or her convenience. Questions focus on asking participants to share their thoughts and feelings on challenges, experiences, and positive aspects of their surgical preparation and hospitalization. The survey will be open through March 1, 2010.
In order to be eligible for the study, you or your child must have a confirmed diagnosis of LDS and must have undergone the cardiac surgery between the ages of 5 and 18.
If you, or your child, is interested in participating or have any questions about the study, please contact either Gretchen or Laura for more information.
We very much look forward to beginning the study and hearing from you and your children! Thank you!
Laura Hutchins,
Masters in Genetic Counseling Student, University of Maryland, Baltimore
lhutc002@umaryland.edu
(302) 448 – 5330
Gretchen Oswald, MS, CGC
goswald1@jhmi.edu
(410) 955 – 3071