Table 1.
Items assessing self-reported competence grouped by palliative care domain (12).
| Domain | Survey Items |
|---|---|
| Domain 1: Structure and Process | 1. Offering the parent(s) the option of palliative care when they are making decisions about a fetus with a life-limiting condition 2. Talking to parent(s) about the range of options including palliative care after their fetus/infant has been diagnosed with a serious medical condition and potential adverse outcome 3. Talking to parent(s) about the range of possible outcomes after their fetus/infant has been diagnosed with a life-limiting condition 4. Engaging in shared decision-making after a life-limiting diagnosis is confirmed 5. Including parent(s) to create a plan of care for the pregnancy and birth 6. Including parent(s) to create a plan of care for the infant after birth 7. Providing prenatal care in a consistent way 8. Communicating with families about priorities of care 9. Understanding the role of palliative care and its integration into intensive care in the NICU 10. Accessing palliative care expertise and support when needed |
| Domain 2: Physical | 11. Attending the delivery and providing palliative care to an infant with a life-limiting condition 12. Assessing the basic needs of infants with life-limiting conditions 13. Making a comprehensive care plan to address an infant's basic needs 14. Developing a nutrition plan for an infant with a life-limiting condition who is breathing and stable on room air 15. Providing interventions to achieve an infant's comfort 16. Assessing pain/discomfort in infants 17. Managing pain/discomfort in infants 18. Assessing other symptoms in infants (respiratory distress, irritability) 19. Managing other symptoms in infants (respiratory, irritability) 20. Following through with documentation of goals of care for an infant with a serious condition and potential adverse outcomes |
| Domain 3: Psychological and Psychiatric | 21. Addressing the unborn child by name 22. Giving parent(s) a sense of normalcy during pregnancy and birth 23. Providing emotional support to parent(s) expecting an infant with a life-limiting condition 24. Exploring with families how they talk with their other children about the infant who is not expected to live |
| Domain 4: Social | 25. Creating a comfortable, caring environment for parent(s) 26. Accessing resources related to perinatal palliative care (clinical resource materials, continuing education) 27. Knowing the community resources available for palliative care and how to access these resources |
| Domain 5: Religious, Spiritual, Existential | 28. Sensitivity to spiritual needs |
| Domain 6: Cultural | 29. Sensitivity to cultural values |
| Domain 7: Care of the Imminently Dying | 30. Having conversations with families about the possibility of their infant dying 31. Recognizing signs of impending death in an infant |
| Domain 8: Legal and Ethical | 32. Identifying and understanding ethical issues related to end of life care for infants |