Skip to main content

Table 2 Complete list of needs-related items

From: Differing needs of mothers and fathers during their child’s end-of-life care: secondary analysis of the “Paediatric end-of-life care needs” (PELICAN) study

Domains and items Presence in questionnaire version
Cardiology Neonatology Neurology Oncology
Support of the family unit domain: I needed
1. To be involved in my child‘s care    x x
2. To have a place to sleep in the hospital close to my childa 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
Relief of pain and other symptoms domain: I needed
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   
Continuity and coordination of care domain: I needed
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 diea 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 goodbyea x x x x
33. That someone from the healthcare team attended my child’s funeral or buriala x x x x
34. To stay in contact with someone from the healthcare team after my child’s death x x x x
  1. a Response option ‘not applicable’ available