Information and communication about perinatal autopsy:  
Meeting the needs of parents and clinicians
Staff Questionnaire 
Thank you for taking the time to complete this questionnaire - it will only take 20 minutes to complete.
This is a duplicate of the hardcopy survey, please do not complete if you have completed the paper version
BACKGROUND INFORMATION


Your hospital name:
 

1. Location of the hospital in which you work ?

ACT NSW NT QLD SA TAS VIC WA NZ
2. Approximate number of births per year ? 
 
3. In which department do you usually work (mark all that applies)?
Antenatal care Neonatal special care
Delivery suite Neonatal intensive care
Postnatal care Pathology
Community Other
4. What is your current position ?
Nurse Unit Manager Clinical Nurse Consultant Endorsed Midwife (level 1)
Clinical Midwife (level 2) Registered Nurse Clinical Nurse
Obstetric Consultant Obstetric Resident Obstetric Registrar
Neonatal Consultant Neonatal Resident Neonatal Registrar
Midwifery/Nursing Educator Social Worker Maternal Fetal Medicine Consultant
Other, Specify:
5. How long have you worked in your current discipline ? 
 
6. Are you a member of the Royal Australian and New Zealand College of Obstetricians and Gynaecologists?

Yes No
COUNSELLING AND CONSENT FOR AUTOPSY

The following questions are about your practice in providing information to parents to assist them in their decision about autopsy consent.

7. When caring for parents following a perinatal death how often do you provide any information (verbal or written) to assist in their decision about autopsy examination of their baby?

Always Often Sometimes Rarely Never ( Go to Question 13 )

8. When a baby is stillborn, when do you generally raise the option of autopsy with parents for the first time?

at diagnosis of an intrauterine fetal death a few hours after the birth
on admission for the birth the day after birth
at the time of the birth    2 or more days after birth

9. For neonatal deaths, when do you generally raise the option of autopsy with parents for the first time?

prior to death (when death is inevitable) the day after the death
at the time of the death         2 or more days after the death
within a few hours of the death          

10. How often do you usually discuss the option of autopsy with parents?

Once only1-2 times>= 3 times

11. When raising the option of an autopsy, in addition to the mother, who do you usually involve in the discussion (mark all that apply):

Father
Another person on request of the parents
 Another staff member, if staff, specify who ?
No-one

12. I usually provide information to parents in the following ways: (mark all that apply):

Verbally
Written materials
Other, specify:

13. Please indicate your satisfaction with the information materials that are available at your hospital to assist parents in their decision about having an autopsy conducted on their baby.

Very satisfiedSatisfiedNeutral Dissatisfied Very dissatisfied None available

14. Please indicate your satisfaction with the information materials that are available at your hospital to assist staff in seeking consent for a perinatal autopsy.

Very satisfiedSatisfiedNeutral Dissatisfied Very dissatisfied None available

15. Do you feel that the information given to parents about an autopsy generally provides:

a) Sufficient detail on the facts about autopsy?

Strongly Agree Agree Neutral Disagree Strongly Disagree

b) Sufficient detail on the positive and negative aspects of their decision about autopsy?

Strongly Agree Agree Neutral Disagree Strongly Disagree

c) Sufficient guidance in the steps of making a decision?

Strongly Agree Agree Neutral Disagree Strongly Disagree

d) A balanced presentation of advantages and disadvantages of consenting to an autopsy?

Strongly Agree Agree Neutral Disagree Strongly Disagree

16. Do you use the Perinatal Society of Australia and New Zealand Clinical Practice Guideline for Perinatal Mortality Audit?

Yes No Unsure

If Yes, please answer Question 17.

17. How helpful are the guidelines to your practice?

Very helpful Helpful Neutral Unhelpful Very unhelpful

18. Do you use either of the Perinatal Society of Australia and New Zealand information brochures (titled Explaining Autopsy – Information for parents when your baby has died, and Obtaining Parental Consent For The Autopsy of a Baby – Important information for the health professional seeking consent)?

Yes No Unsure

If Yes, please answer Question 19.

19. How helpful are the guidelines to your practice?

Very helpful Helpful Neutral Unhelpful Very unhelpful

20. How helpful do you think a Decision Aid# would be in assisting parents to make an informed decision about perinatal autopsy consent? (# A decision aid is a tool used to assist patients to make a shared decision about treatment options that involves both information and assessment of risk.)

Helpful Unsure Not helpful
STAFF EDUCATION AND SUPPORT

21. Please indicate your satisfaction with the training provided to you for counselling parents regarding autopsy.

Very satisfiedSatisfiedNeutral Dissatisfied Very dissatisfied None available

22. How confident do you feel about seeking consent from parents for an autopsy?

Very confident Confident Neutral Unconfident Very unconfident

23. Have you ever witnessed a perinatal autopsy?

Yes No

24. Do you think that witnessing a perinatal autopsy is helpful to a clinician’s practice?

 Yes No Unsure
VIEWS ABOUT AUTOPSY

The next set of questions is about your personal views and perceptions on the role of autopsy

25. Autopsy is less valuable now due to the advances in other medical diagnostics

Strongly Agree Agree Neutral Disagree Strongly Disagree

26. The value of the autopsy varies according to the expertise of the person conducting it

Strongly Agree Agree Neutral Disagree Strongly Disagree

27. The additional information provided from autopsy is rarely worth the emotional burden to parents involved in this intrusive procedure

Strongly Agree Agree Neutral Disagree Strongly Disagree

28. It is insensitive to discuss the option of autopsy with parents because they are too distressed

Strongly Agree Agree Neutral Disagree Strongly Disagree

29. An autopsy is not worth doing if the baby needs to be transferred to another unit for the autopsy

Strongly Agree Agree Neutral Disagree Strongly Disagree

30. An autopsy is usually not worthwhile if the parents have to wait more than 3 months for the autopsy report

Strongly Agree Agree Neutral Disagree Strongly Disagree

31. Few parents regret having an autopsy performed

Strongly Agree Agree Neutral Disagree Strongly Disagree

32. In the absence of full autopsy, examination of the placenta is helpful to determine cause of death

Strongly Agree Agree Neutral Disagree Strongly Disagree

33. MRI scan is an acceptable alternative to invasive autopsy examination

Strongly Agree Agree Neutral Disagree Strongly Disagree
BARRIERS TO AUTOPSY CONSENT

Please rate the degree to which you think the following factors are a barrier to gaining consent for autopsy:

34. Not having a rapport with the parents prior to discussing the autopsy

Strong barrier A barrier Undecided Slight barrier No barrier

35. The emotional distress of the parents

Strong barrier A barrier Undecided Slight barrier No barrier

36. The workload of the staff

Strong barrier A barrier Undecided Slight barrier No barrier

37. The length of time it takes to receive a report on the findings of the autopsy

Strong barrier A barrier Undecided Slight barrier No barrier

38. The cost of the autopsy

Strong barrier A barrier Undecided Slight barrier No barrier

39. The lack of evidence on the value of an autopsy

Strong barrier A barrier Undecided Slight barrier No barrier

40. Cultural and religious beliefs of the parents

Strong barrier A barrier Undecided Slight barrier No barrier

41. The adverse publicity regarding autopsy in the media

Strong barrier A barrier Undecided Slight barrier No barrier

42. The lack of a perinatal pathologist available to do the autopsy

Strong barrier A barrier Undecided Slight barrier No barrier

43. At your unit do you need to transfer the baby to a larger unit to perform the autopsy?

AlwaysSometimesNeverDon’t know

44. How would you rate the need for transfer as a barrier?

Strong barrier A barrier Undecided Slight barrier No barrier
ABOUT THE AUTOPSY PROCEDURE

The following questions relate to your knowledge regarding the autopsy procedure

45. Autopsy requires specific consent for organ retention

True False Don’t Know

46. The brain can be adequately examined and returned immediately to the body at the time of autopsy

True False Don’t Know

47. Using fetal tissues for research always requires parental consent and prior approval by the hospital ethics committee

True False Don’t Know

48. Blocks and tissue from a post mortem are disposed of after one year

True False Don’t Know

49. Magnetic Resonance Imaging (MRI) offers as much information as an autopsy

True False Don’t Know

50. After the autopsy the parents should be advised against viewing their baby’s body

True False Don’t Know

For stillbirths in general

51. How likely do you think it is that an autopsy will identify significant information regarding the cause of death?

5-10% 11-20% 21-40% 41-60% 61%+

For neonatal deaths in general

52. How likely do you think it is that an autopsy will identify significant information regarding the cause of death?

5-10% 11-20% 21-40% 41-60% 61%+
ABOUT THE INVESTIGATIONS PERFORMED

The following questions relate to your views regarding stillbirth investigations

53. In the management of a stillbirth which investigations should be undertaken?

MOTHER

a) Full blood count Always Based on clinical scenario only Never
b) Blood group and antibody screen Always Based on clinical scenario only Never
c) Kleihauer Always Based on clinical scenario only Never
d) Urea, electrolytes and creatinine Always Based on clinical scenario only Never
e) Urate Always Based on clinical scenario only Never
f) Liver function tests Always Based on clinical scenario only Never
g) Bile acids Always Based on clinical scenario only Never
h) Thyroid function tests Always Based on clinical scenario only Never
i) Glycosylated Haemoglobin (HbA1C) Always Based on clinical scenario only Never
j) Cytomegalovirus Always Based on clinical scenario only Never
k) Toxoplasma serology Always Based on clinical scenario only Never
l) Parvovirus B19 serology Always Based on clinical scenario only Never
m) Rubella (if not already done antenatally) Always Based on clinical scenario only Never
n) Syphilis (if not already done antenatally) Always Based on clinical scenario only Never
o) Herpes Varicella Zoster Always Based on clinical scenario only Never
p) Thrombophilia screen Always Based on clinical scenario only Never
q) Antenatal ultrasound scan with biometry at time of diagnosis of fetal death Always Based on clinical scenario only Never
r) Antenatal amniocentesis for chromosomal analysis and/or microbiological culture Always Based on clinical scenario only Never

BABY

a) Clinical photographs for fetal structural anomaly Always Based on clinical scenario only Never
b) Cord sample for chromosomal analysis and/or microbiological culture Always Based on clinical scenario only Never
c) Skin sample for chromosomal analysis and/or microbiological culture Always Based on clinical scenario only Never
d) Surface swabs of the baby Always Based on clinical scenario only Never
e) Placental histology Always Based on clinical scenario only Never
f) Placental biopsy for chromosomal analysis Always Based on clinical scenario only Never
g) Microbiology (any of the following – placental swab, fetal swab, vaginal swabs) Always Based on clinical scenario only Never
COMMENTS / SUGGESTIONS


Please provide any comments/suggestions on any aspects of autopsy consent or stillbirth investigations


 

Thank you for taking the time to complete this survey