Table 2 Complete list of needs-related items

1. To be involved in my child‘s care

x

x

2. To have a place to sleep in the hospital close to my child^a

x

x

3. To have respite from the care of my child

x

x

4. To have a room where my family and I could spend some private time together

x

x

5. To share my fears and worries with someone from the healthcare team

x

x

x

x

6. That my child received enough medication to ease her/his suffering

x

x

x

7. That my child was awake and receptive enough to be able to play/speak/or do things with us or other people around

x

x

8. To take my child in my arms

x

9. That my child received complementary and alternative medicine

x

x

x

10. That my child received fluids until the end

x

x

x

11. To have physical contact with my child

x

12. That my child received medication to calm her/him

x

13. To be able to use non-pharmacological measures to ease my child’s suffering e.g. massage, tucking

x

14. That I could give my child milk, either through the tube, with a bottle or a cotton swab

x

15. To have a professional from the healthcare team to coordinate the care of my child

x

x

x

x

16. To have the same physician providing care

x

x

x

x

17. That my child’s care was mostly provided by the same nurses

x

x

x

x

Communication domain: I needed

18. To have the opportunity to ask questions at all times

x

x

x

x

19. To be continuously informed about my child’s condition

x

x

x

x

20. To find out how my child would die

x

x

x

x

21. To be supported in maintaining hope despite the hopeless situation

x

x

22. To be informed early about my child’s imminent death

x

x

Shared decision making domain: I needed

23. To be involved in taking decisions

x

x

x

x

24. That my personal beliefs and values were considered when taking decisions

x

x

x

x

25. Not to have the feeling that I had to take decisions all by myself

x

x

x

x

26. That the cessation of non-helpful treatments was discussed with me

x

x

27. That the cessation of life-sustaining measures was discussed with me

x

28. That the measures to resuscitate my child were discussed with me

x

Bereavement support domain: I needed

29. To have the choice of where child might die^a

x

x

x

x

30. That family and friends could say goodbye to my child

x

x

x

x

31. That I was supported by the healthcare team to structure the hours after the death of my child according my needs

x

x

x

x

32. To take my child home after her/his death so that family and friends could say goodbye^a

x

x

x

x

33. That someone from the healthcare team attended my child’s funeral or burial^a

x

x

x

x

34. To stay in contact with someone from the healthcare team after my child’s death

x

x

x

x