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Questionnaire about the diagnosis

10 years ago, a professor for remedial education and a professor for moral theology from the University of Erfurt (Germany) called me to learn more about the parents' point of view when a baby is diagnosed with anencephaly.

We have formed an "anencephaly task force" and have organized 9 interdisciplinary conferences, welcoming physicians, midwifes, nurses, theologians, pedagogues, ethicists and affected families. We have edited a book, and several members of our group have published articles about children with anencephaly. Was it difficult to find information about this birth defect in German 10 years ago, things have changed.

This year we'll have our 10th conference (November 1st and 2nd, 2013) and the theme will be the diagnosis itself. And as the representative of the parents, I'll do a speech about how affected families experience this heartbreaking event.

Our ultimate goal is to elaborate guidelines how to communicate a diagnosis like anencephaly in the most sensitive way.

Would be willing to help me showing the participants of our conference what are the affected families' needs and experiences?

Below is a questionnaire about the diagnosis. Participation is anonymous; I don't need any information about your identity.

Thank you very much for taking a few minutes to share your experience around your baby's diagnosis with us.

I am so sorry about your baby's diagnosis and the hardship and pain you are going or had to go through... Your experience mey help that other families will get the best care possible.

With caring,

Monika Jaquier




BEFORE the diagnosis

The day of the diagnosis

After the diagnosis






Even more...

If you want to do a little more. Another member of your German anencephaly task force is an affected mom herself and a psychotherapist. She is currently writing her doctoral thesis about families of children with anencephaly. The following questionnaire would help her to evaluate the impact of the diagnosis of anencephaly on a mother.

The participation is anonymous again, she doesn't need your or your baby's name or address.


The impact of the diagnosis on your life

Please answer the following questions concerning the moment you were informed about the diagnosis anencephaly:

3. Right after the diagnosis
(please mark YES or NO)
A1. Did you feel helpless?
A2. Were you frightened?
A3. Did you feel horrified?
A4. Did you feel powerless?
A5. Did you think your life was in danger?
A6. Did you think someone else's life was in danger?
A7. Did you realize your child's life was in danger?
A8. Did you realize that your child would die?

Instruction: Below is a list of difficulties people sometimes suffer from after stressful life events.
Please read each item carefully, and then choose an answer

1. Did the diagnosis cause upsetting thoughts or images that came to your mind although you didn't want them to?
2. Have you tried not to think about the diagnosis, not to talk about it or to supress feelings about it?
3. Did you have trouble falling or staying asleep?
4. Did you have moments in which you lost track of what was happening or did you feel like not being a part of what was going on?
5. Did you have nightmares about the diagnosis?
6. Did you try to avoid situations that remind you of the diagnosis (e.g. activities, people or places)?
7. Did you have fit of rages or were you often nervous?
8. Did your sense of time change, as if everything was happening in slow motion?
9. Has it ever happen to you that you felt like living through the event suddenly again?
10. Were you unable to remember an important part of the event?
11. Did you have trouble concentrating (e.g. forgetting what you just wanted to do, or forgetting what you just read or what you saw on television)?
12. Did the diagnosis appear unreal to you, as if you were dreaming or watching a film or a play?
13. Did you feel emotionally upset when you were reminded of the event (feeling helpless, angry, sad, guilty)?
14. Did you lose interest in activities which had been important for you before the diagnosis (e.g. hobbies, sport)
15. Were you overly alert (e.g. checking to see who is around you, having a phone close-by for calling help if it was necessary)?
16. Were there occasions when you felt like you were unable to be aware of your mirror image?
17. Did you have physical reactions when you were reminded of the diagnosis (e.g. uneasiness, shiver or fast heartbeat)?
18. Did you feel alienated or isolated from people in your environment?
19. Were you easily startled or highly nervous (e.g. by loud noises)?
20. Did you feel disoriented? Were there moments in which you were not sure where you were and what time it was?
21. Did you feel emotionally numb (e.g. being unable to cry or unable to have positive feelings)?
22. Did you feel like your plans for the future and hopes will not come true (e.g. to start a family, less luck in life or in business than the others)?
23. Did you sometimes feel like your body does not belong to you?

24. Ever since the diagnosis, did you have more physical complaints? If yes, which of these?
abdominal pain

25. How much does the diagnosis bother you right now?

26. How long have you experienced the problems that you reported above (question 1 to 23)?

27. How much time after the diagnosis did these problems (question 1 to 23) occur?

28. Instruction: Indicate below how much, the problems you described above, affected you in any of the listed areas of your life after learning about the diagnosis anencephaly. Please mark how much

a. General satisfaction with life
b. School/work/job
c. Household chores and duties
d. Hobbies and leisure activities
e. Relationships with friends
f. Relationships with family members
g. Sexuality



Last updated September 17, 2013