Welcome to the TRIS Survey homepage.  We appreciate the time you’ve taken to visit our website and learn about TRIS. We hope you are willing to share information with us that will assist other families with a child with a rare trisomy condition.  

 

The purpose of TRIS Survey is to collect and analyze data to increase awareness and knowledge about trisomy 18, 13 and other rare trisomy conditions. This information will be made available to families and professionals involved in the care of children and adults affected by these conditions through publications, presentations, etc. you will complete either the full length TRIS Survey or the MODIFIED Survey. Parents with living children complete the former and parents of angels (stillbirth, passed away within 24 hours of birth, miscarried or selective termination) will complete the latter.

           

The TRIS Survey includes three parts. Below is a brief description of each.

 

Part I contains four sections with items related to your pregnancy and your child’s birth and immediate postnatal experiences. Part I also asks for information, as appropriate, about the basic and medical care your child received prior to coming home to your care.  Part I also includes items about yourself and your family such as your marital status, country of origin and highest level of education.

 

Part II includes eight sections focusing on support you have received from your immediate and extended family such as emotional support from your spouse or partner and assistance from grandparents. Items also request information about your participation with face-to-face and online groups (e.g., trisomy specific, religious organizations) as well as support from friends and co-workers such as emotional or financial. Items are arranged to ask about these supports, as appropriate, prior to, immediately after birth and at the current time.  

 

Part III has nine sections divided into three subsections. The first subsection collects information about in-home and community-based services, educational and therapy interventions and current equipment needs. The second subsection focuses on behavioral concerns, equipment needs, surgical interventions and specific medical needs such as seizure management and monitoring for Wilm’s tumor. The final subsection asks you to provide information about your child’s developmental milestones including age at attainment and adaptations or modifications (e.g., walks with a gait trainer).

 

The MODIFIED Survey includes a total of 50 items. There are four sections with items regarding your pregnancy, your child’s trisomy diagnosis, hospital experience (as appropriate) and support from family members, friends and coworkers. Demographic information is collected as well.

 

Please answer each item to the best of your ability and depending on your child’s unique strengths and needs. If your child is an angel, we would greatly appreciate completing as many items as you can. We understand that your child may not have experienced some or many of the conditions, etc. as long-term survivors do. Yet, your responses assist us to better examine commonalities among children and adults with rare trisomy syndromes.

 

If you are unclear about an item, feel free to contact us at tris@siu.edu for clarification. If you are uncomfortable or distressed about sharing specific information, you have the option to leave the item or items blank. If possible, provide a brief explanation for your decision. All of your responses are important to the TRIS project.

 

The information you provide will be coded and entered into Word documents, Excel spreadsheets and SPSS for Windows statistical package as appropriate. The resulting data sets will be reported in aggregate form meaning individual data will be combined and only commonalities and differences will be shared with interested audiences. Your name will not be linked in any way to your data. In addition, information will be stored electronically and backed up to a secure server. Only TRIS staff will have access to your completed survey.

 

This project has been reviewed and approved by the SIUC Human Subjects Committee.  Questions concerning your rights as a participant in this research may be addressed to the Committee Chairperson, Office of Research Development and Administration, Southern Illinois University, Carbondale, IL 62901-4709.  Phone (618) 453-4533.   E-mail  siuhsc@siu.edu

 

Again, thank you very much for your participation.  Feel free to email us at tris@siu.edu if you have any questions.

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