Online consultation on prenatal screening for Down syndrome (or trisomy 21)
Thank you for participating in the Health and Welfare Commissioner’s consultation on prenatal screening for Down syndrome. Your answers are very important and will greatly contribute to our reflections on the subject. Your opinion can be based on your own personal experience, on your perception of the current situation or on the information available on the Commissioner’s Web site.
Answers to open questions will be analysed with the assistance of a computer program (Sémato). Please avoid abbreviations and do not write in capital letters.
Please fill out the questionnaire and at the end of the page don’t forget to click on the Send button.
Let’s begin by talking about you
1. You are...
A woman
A man
2. How old are you?
Under 18
18-34
35-44 ans
Over 45
3. What is your highest level of education completed?
Primary
Secondary
CEGEP
University
Other situation (Please specify below)
Other education
4. Which language do you mainly speak at home?
French
English
Spanish
Other (Please specify below)
Other language
5. Do you have one or more children?
Yes
No
6. Are you...
Someone with Down syndrome
A relative or a close friend of someone with Down syndrome
Someone who has a mental or physical disability other than Down syndrome
A relative or a close friend of someone with a mental or physical disability other than Down syndrome
Someone who knows someone with Down syndrome
Pregnant
A partner or spouse of someone pregnant
A member of an association concerned with Down syndrome
A health professional
Other relevant information (please specify below)
Other relevant information
Questions about how you perceive Down syndrome (or trisomy 21) in Quebec society
7. Write below a word (or a short expression) that immediately comes to mind when you read «Down syndrome».
8. Write below a second word (or short expression) that immediately comes to mind when you read «Down syndrome».
9. Write below a third word (or short expression) that immediately comes to mind when you read «Down syndrome».
Comments
10. In your opinion, to what extent are the following areas of Quebec society open to the presence of people with Down syndrome? Don’t choose any answer if you don’t have an opinion.
10a. Work environment
Very open
Faily open
Fairly closed
Closed
10b. School environment
Very open
Faily open
Fairly closed
Closed
10c. Sports and leisure
Very open
Faily open
Fairly closed
Closed
10d. Culture and the arts
Very open
Faily open
Fairly closed
Closed
Comments
11. In your opinion, to what extent is the quality of life of people with Down syndrome affected by the following elements? Don’t choose any answer if you don’t have an opinion.
11a. The support and availability of close family and friends
Very important
Moderately important
Barely important
Unimportant
11b. The accessibility of services to support the close family and friends.
Very important
Moderately important
Barely important
Unimportant
11c. The social integration of people with Down syndrome
Very important
Moderately important
Barely important
Unimportant
11d. The availability of resources that encourage the independence of people with Down syndrome
Very important
Moderately important
Barely important
Unimportant
11e. Other elements that might affect the quality of life of people with Down syndrome
12. In your opinion, to what extent is the quality of life of close family and friends of people with Down syndrome affected by the following elements? Don’t choose any answer if you don’t have an opinion.
12a. The support and availability of other family members and friends
Very important
Moderately important
Barely important
Unimportant
12b. The accessibility of support and relief services
Very important
Moderately important
Barely important
Unimportant
12c. The social integration of people with Down syndrome
Very important
Moderately important
Barely important
Unimportant
12d. The availability of resources that encourage the independence of people with Down syndrome
Very important
Moderately important
Barely important
Unimportant
12e. Other elements that could affect the quality of life of close family and friends of people with Down syndrome
13. In your opinion, how could we improve the quality of life of people with Down syndrome and of their close family and friends?
14. In your opinion, can people with Down syndrome fully participate in Quebec society? Don’t choose any answer if you don’t have an opinion.
Yes, always
Yes, most of the time
No, seldom
No, never
Why?
15. In your opinion, are the opportunities offered to people with Down syndrome in our society different from those offered to people with other mental disabilities? Don’t choose any answer if you don’t have an opinion.
Very different
Fairly different
A bit different
They are the same
Comments
16. In your opinion, are the opportunities offered to people with mental disability different from those offered to people with other types of handicaps? Don’t choose any answer if you don’t have an opinion.
Very different
Fairly different
A bit different
They are the same
Comments
17. Do you think that the government should take measures to encourage the involvement of disabled people in the development of policies that concern them?
Yes
No
I have no opinion
Why? And if yes, which measures?
Questions concerning your opinion about prenatal screening for Down syndrome
18. To what extent do you agree with the principle of a prenatal screening test for Down syndrome offered by the public health and social services system?
I strongly agree
I agree
I disagree
I strongly disagree
Why?
19. If you or your partner or spouse were expecting a child, would you want to have access to a screening test for Down syndrome?
Yes
No
I do not know
Why?
20. In your opinion, should screening tests for Down syndrome be free for all pregnant women, regardless of their age?
Yes
No
I have no opinion
Why?
21. Should screening for other conditions be offered in our society?
Yes
No
I have no opinion
Why? If yes, according to which criteria?
22. In your opinion, what are the main ethical issues associated with screening for Down syndrome?
The following questions are directed to people who have been offered testing for Down syndrome (section A) and to people with Down syndrome or their close family or friends (section B). These questions aim to allow you to share your experience. If they do not relate to you, please skip to the end of the questionnaire and click on the Send button.
A - Questions directed to people who have been offered prenatal screening for Down syndrome at least once
23. Who recommended that you have a test to screen for Down syndrome? How was it proposed?
24. When the test was proposed, what information was given to you (nature of the test, probabilities, pregnancy follow-up, life with someone with Down syndrome, available support, possibility of pregnancy interruption, etc.)?
25. In what form was this information given to you?
26. The following questions concern your assessment of this information. Don’t choose any answer if you don’t know anymore.
26a. Was this information...
Satisfactory
Unsatisfactory
26b. Was this information...
Clear
Unclear
26c. Was this information...
Accessible
Inaccessible
Comments
27. What sources of information were useful to you?
28. Did you feel pressured in your decision to undergo the screening test or the diagnostic test, or in your decision about whether or not to pursue the pregnancy?
29. Did you receive support during the testing process from the time the test was proposed until the end of the process?
Yes, a lot
Yes, a little
Yes, but barely
No, not at all
30. What were your main sources of support (there can be more than one answer)
Health professional
Partner or spouse
Family
Organization
Other (please specify in the comments section)
Comments
32. Would you have appreciated more support? From whom?
33. Had you decided in advance what you would do in the event of a diagnosis of Down syndrome?
Yes
No
34. How were the results announced to you and how did you react?
35. Would you want to undergo the screening test again in the event of another pregnancy?
Yes
No
I do not know
Why?
B - Questions directed to people with Down syndrome and to their close family and friends
36. If you have Down syndrome or if you are a relative or friend of someone who has it, could you describe some outstanding experiences resulting from this situation in…
36a. ...everyday life?
36b. ...the services provided or used?
37. From your own experience, how could parents who are expecting a child with Down syndrome be better prepared? What would you say to these parents?
38. What are the specific challenges raised by living with Down syndrome?
39. Are there services that you need and cannot get?
Yes
No
Which ones?
40. If you have a child with Down syndrome, could you describe what the arrival of this child has brought to your life?
41. If you have Down syndrome, could you describe a situation in which you felt especially happy and valued?
42. Other general comments
43. Comments about this electronic questionnaire
Thank you very much! The analysis of the results of this online consultation will be presented in the report that the Health and Welfare Commissioner will submit to the Minister of Health and Social Services in the fall of 2008.
Careful: once you have sent the questionnaire you can no longer modify it.
This WEB site questionnaire was generated by Sémato, a WEB semantic assistance software for the categorization of textual data.
