The purpose of this research study is to learn about when women make the decision to continue

pregnancies diagnosed with Down syndrome and how women feel about learning their child’s

diagnosis of Down syndrome during pregnancy.

The criteria to participate in this study are:

1) You have a child with Down syndrome whose birth date falls between the years 2007-2010, and

2) You had a prenatal diagnostic test (CVS or amniocentesis) and learned about your child’s

diagnosis while you were pregnant.

Participation in this study is voluntary. You may choose to stop taking this survey at any time.

There are 21 questions below. Please mark the answer(s) that applies to you or fill in your answers in the spaces provided.All answers collected from this survey will remain anonymous.

1. Do you have a child with Down syndrome whose birth date falls between the years 2007-2010?

Yes

No

Not sure

If no: you do not meet the criteria to participate in this study. Thank you, we appreciate your time.

2. Did you learn about your child’s diagnosis of Down syndrome during pregnancy?

Yes

No

Not sure

3. If yes, how did you learn about the diagnosis (check all that apply)?

Prenatal screening test result (blood test with or without early ultrasound) indicated increased chance of Down syndrome

CVS (chorionic villus sampling, sample of tissue from placenta)

Amniocentesis (sample of amniotic fluid)

Suspicious findings on ultrasound

Not sure

If you did not have a CVS or amniocentesis: you do not meet criteria to participate in this study.Thank you, we appreciate your time.

4. How old were you when your child with Down syndrome was born? ______

5. What is your ethnicity?

Caucasian

Asian

African American

Hispanic

Other: ______

6. What is your primary religion?

Christian

Jewish

Muslim

Hindu

Buddhist

Atheist

Other: ______

7. How religious are you?

Not at allreligious

Not very religious

Somewhat religious

Very religious

8. What is your level of education?

Did not complete high school

High school

Some college

Bachelor’s degree

Graduate or professional degree

9. What is your combined household income?

<$50,000

$50,000-80,000

$80-120,000

$120-200,000

$200,000+

10. How many other children do you have and what are their birth years? ______

11. How did learning about your child’s diagnosis of Down syndrome prenatally affect your anxiety level during the pregnancy?

My anxiety level decreased.

It had no affect on my anxiety.

My anxiety level increased.

12. At what point did you decide to continue the pregnancy with a diagnosis of Down syndrome?

Before I got pregnant/ I had already decided never to terminate a pregnancy

After a suspicious ultrasound

After receiving suspicious prenatal screening (blood test) results

As soon as I learned the diagnosis(by CVS or amniocentesis)

Days after learning about the diagnosis (by CVS or amniocentesis)

Weeks after learning about the diagnosis (by CVS or amniocentesis)

13. Rate how strongly each of the following factors affected your decision to continue the pregnancy after learning about the diagnosis of Down syndrome.

Please circle your answerswith (1) having the least impact and (5) having the greatest impact:

Least impact Greatest impact

Personal experience with disabilities / 1 2 3 4 5
Personal experience with Down syndrome / 1 2 3 4 5
Consideration of the impact on other family members / 1 2 3 4 5
Financial resources / 1 2 3 4 5
Genetic counseling received / 1 2 3 4 5
Religious/spiritual beliefs / 1 2 3 4 5
Moral beliefs / 1 2 3 4 5

14. If you could do it over, would you choose to learn the diagnosis during the pregnancy or at birth? Please explain.

______

15. In what ways was learning about the diagnosis of Down syndrome before your child was born:

  • Valuable or helpful?

______

  • Not valuable or not helpful?

______

16. What was your experience with people with disabilities and/or people with Down syndrome before having prenatal diagnosis?

______

17. What were the main factors that influenced your decision to continue a pregnancy after learning about the diagnosis of Down syndrome?

______

18. Looking back on your experience, how do you feel nowabout your decision to continue a pregnancy after learning about the diagnosis of Down syndrome?

______

19. Did you receive genetic counseling during your pregnancy?

Yes

No

Not sure

If you received genetic counseling during your pregnancy:

20. How do you feel about the genetic counseling provided to you?

______

21. What advice do you have for genetic counselors working with women who have received a recent diagnosis of Down syndrome during their pregnancy?

______

Any additional comments?

______

Thank you for taking the time to complete this survey!