Friday, January 17, 2014

Research Opportunity: Prenatally Diagnosed Moms Need Apply!

 
As you can imagine, we welcome and receive constant feedback from HLHS families across the country.  Recently, Miami Children's Hospital referred one of their families to Sisters by Heart.  We're so very glad they did, as there is a unique opportunity for single ventricle families to participate in a research study.

Dawn Silverman, a heart mom with a passion for psychology, took her education to a very different level than she thought possible, after her unborn son, Caden was diagnosed with HLHS.  Dawn decided to use her psychological training and her experience as a heart mom, to advance patient centered research in the Congenital Heart Community.

Significant focus on patient centered and driven research makes Dawn's study unique - she is literally the patient and the researcher!  What better way to encourage patient driven research than helping Dawn reach hundreds of single ventricle families.

 

Dawn and Caden (HLHS, age 5)

Psychology Doctoral Study - Dawn Silverman, LMHC, MEd/Eds

The Lived Experience of Pregnancy with a Neonatal Diagnosis of Single Ventricle Heart Defect: A Heuristic Study. 

The purpose of Dawn's study is to investigate the prenatal experience following the diagnosis of a single ventricle fetus.

The following is a layout of some of the study criteria, procedures and requirements for HLHS families to participate.  Sisters by Heart believes that nearly all prenatally diagnosed families we serve will meet the study criteria.  The committment to participate is small, but may carry significant benefits to future HLHS moms.

Participant Criteria:  Mothers who were informed during their pregnancy that their baby had a single ventricle defect, and whose baby/child with the heart defect is still alive. During that pregnancy, you had to be pregnant with just one baby and received the congenital heart defect diagnosis while you were pregnant (not after the baby was born). All participants will be between at least 18 years of age.
 

Study Procedures
  • Participants will meet with the researcher for 1 to 3 hours to be interviewed about their pregnancy experiences.
  • Interviews will be recorded.
  • All recordings and information will be kept confidential with no use of participants’ identifying information.
  • The recordings will be transcribed and analyzed by the researcher.
  • Participants will be provided with a summary of their interview (via phone or email) to verify that it is an accurate description of their lived experience.
  • A report regarding the findings from the analysis will be generated.
Benefits: For this study, you may benefit from potentially gaining greater insight into your pregnancy experience. Participants may also gain a level of satisfaction and sense of “paying it forward” by knowing that their participation will also offer a greater benefit to the scientific community. The data participants impart can yield information that can potentially help decrease the suffering of other women who are actually living this experience as well as serve to assist healthcare workers to better meet the emotional needs of the pregnant women they treat.

Time CommitmentParticipation requires about 1- 3 hours. The interview will be conducted at a mutually decided upon secure location. Participants will also be provided with a summary of their interview to verify that it is an accurate description of their lived experience over the telephone or via e-mail. This will require less than an hour of the participant’s time.

 
Enrollment: To enroll, interested participants should contact the researcher via email (dsilverman@capellauniversity.edu). The researcher will email additional information about the study and eligibility requirements. Women meeting participation requirements will then be emailed information about how to consent to participate in the study. Once your questions are answered, enrollment requires a signature consenting to participate.
 
Contact:  If you are interested in participating or for additional information, please contact Dawn Silverman at (561) 329-3871 or dsilverman@capellauniversity.edu.

Additional information regarding Dawn's study can be found on her research site:  https://sites.google.com/site/chdstudy/home

Thank you Dawn, for your passion and empathy for heart moms and in dedicating your doctorate work to improving the prenatal experience post single ventricle diagnosis.  We look forward to reading a summary of your study results once your dissertation is complete! 

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