Table 1

Questionnaire with results

1.How old is your child?Age range 7 months – 7 years
2.How well do you feel your child is at present?Not very well 0
Quite well 6
Very well10
Not applicable, as first child died 3
3.Were you offered genetic counselling following the birth of your child?No 4
Yes14
If NO, go to question 5Could not remember 1
4.If you were, did you take this offer?No 5
Yes 9
If NO, why (see text)
5.Did you seek counselling prior to the next pregnancy?No12
Yes 6
No response 1
6.Did you seek counselling immediately after becoming pregnant (after the birth of your child with CF)?No 7
Yes12
7.(a) On the subsequent pregnancy, were you offered a test to see if your unborn baby would have CF?No 4
Yes15
(b) Did you discuss your pregnancy with any member of the CF team?No15
Yes 4
If YES, did this discussion help you in your decision?No 3
Yes 1
If NO, why not (see table 2)
8.(a) If you were offered a test did you take up this facility?No10
Yes 9
If YES, go to question 10
If NO, go to question 9
9.If you did not choose to see if the subsequent pregnancy (after the birth of your child with CF) was affected, please fill in the following section:
AgreeNo opinion Disagree
(a) You did not want to know if the baby would be affected by CF?41 3
(b) The risk of miscarriage of the test discouraged you?61 1
(c) It is unlikely (less than 1 in 4) that you would have a second child with cystic fibrosis because you already have one with cystic fibrosis10 7
(d) There might be a cure for cystic fibrosis soon30 5
(e) Cystic fibrosis is not such a serious disease10 7
(f) You don’t agree with terminations60 2
(g) You don’t agree with terminations due to religious reasons01 7
(h) You don’t agree with terminations in this type of situation70 1
(i) If you had a termination, it would seem as if you were devaluing the life of your child with cystic fibrosis70 1
(j) Other reason not mentioned above10 7
(k) Would you make the same decision again?60 2
Responses to the above were not applicable for the 2 families who had IVF
10.(a) Were you offered the option of a termination of pregnancy if the test was “positive” for CF?No 1
Yes 7
No response 1
(b) Did you think the genetics team approved of terminating the pregnancy?Yes 8
No response 1
Having taken up the option of having a test, was this because
AgreeNo opinion Disagree
(c) You wanted a termination if test was positive?60 3
(d) Wanted to know if unborn baby would have CF to give you time to prepare?50 4
(e) Wanted to know if the baby would be a CF carrier?21 6
(f) Did not want to risk having another child with CF?60 3
(g) Would you make the same decision again?90 0
11.Any other comments (see table 2)