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Support of the family unit domain: I needed
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1. To be involved in my child‘s care
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x
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x
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2. To have a place to sleep in the hospital close to my childa
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x
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x
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3. To have respite from the care of my child
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x
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x
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4. To have a room where my family and I could spend some private time together
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x
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x
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5. To share my fears and worries with someone from the healthcare team
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x
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x
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x
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x
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Relief of pain and other symptoms domain: I needed
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6. That my child received enough medication to ease her/his suffering
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x
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x
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x
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7. That my child was awake and receptive enough to be able to play/speak/or do things with us or other people around
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x
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x
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8. To take my child in my arms
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x
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9. That my child received complementary and alternative medicine
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x
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x
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x
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10. That my child received fluids until the end
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x
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x
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x
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11. To have physical contact with my child
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x
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12. That my child received medication to calm her/him
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x
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13. To be able to use non-pharmacological measures to ease my child’s suffering e.g. massage, tucking
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x
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14. That I could give my child milk, either through the tube, with a bottle or a cotton swab
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x
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Continuity and coordination of care domain: I needed
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15. To have a professional from the healthcare team to coordinate the care of my child
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x
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x
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x
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x
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16. To have the same physician providing care
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x
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x
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x
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x
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17. That my child’s care was mostly provided by the same nurses
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x
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x
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x
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x
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Communication domain: I needed
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18. To have the opportunity to ask questions at all times
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x
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x
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x
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x
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19. To be continuously informed about my child’s condition
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x
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x
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x
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x
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20. To find out how my child would die
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x
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x
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x
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x
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21. To be supported in maintaining hope despite the hopeless situation
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x
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x
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22. To be informed early about my child’s imminent death
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x
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x
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Shared decision making domain: I needed
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23. To be involved in taking decisions
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x
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x
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x
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x
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24. That my personal beliefs and values were considered when taking decisions
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x
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x
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x
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x
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25. Not to have the feeling that I had to take decisions all by myself
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x
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x
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x
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x
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26. That the cessation of non-helpful treatments was discussed with me
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x
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x
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27. That the cessation of life-sustaining measures was discussed with me
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x
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28. That the measures to resuscitate my child were discussed with me
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x
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Bereavement support domain: I needed
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29. To have the choice of where child might diea
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x
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x
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x
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x
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30. That family and friends could say goodbye to my child
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x
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x
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x
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x
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31. That I was supported by the healthcare team to structure the hours after the death of my child according my needs
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x
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x
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x
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x
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32. To take my child home after her/his death so that family and friends could say goodbyea
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x
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x
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x
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x
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33. That someone from the healthcare team attended my child’s funeral or buriala
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x
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x
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x
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x
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34. To stay in contact with someone from the healthcare team after my child’s death
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x
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x
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x
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x
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