Itema | Domainb | Weighted Item Score | Original Instrument |
---|---|---|---|
1. Care team treats my child’s physical symptoms so that my child has as good a quality of life as possible. | Physical aspects of care: Symptom management | 61.08 | New item after Phase 2 analysis (NCP 4th Edition Domains) [25] |
2. I feel prepared to treat my child’s symptoms at home | Physical aspects of care: Symptom management | 35.47 | Massachusetts PPCN Evaluation (Bona, 2011) [11] |
3. My child can easily get necessary care | Access to care team | 30.30 | Seattle Pediatric Palliative Care Project evaluation (Hays, 2006) [30] |
4. Care team uses medicines to ease my child’s pain and other symptoms. | Physical aspects of care: Symptom management | 27.50 | Parental PELICAN Questionnaire (Zimmerman, 2015) [22] |
5. I trust the care team | Relationship between family and care team | 26.94 | Quality of Children’s Palliative Care Instrument (Widger, 2015) [53] |
6. Care team works together with me and my child to make medical decisions | Relationship between family and care team | 26.19 | Parental PELICAN Questionnaire (Zimmerman, 2015) [22]; Seattle Pediatric Palliative Care Project evaluation (Hays, 2006) [30] |
7. Care team helps me do the best for my child | Relationship between family and care team | 24.43 | New item (PPHC expert panel, Sept 2018) |
8. Care teams asks for my opinions and concerns about my child | Communication between family and care team | 24.20 | Quality of Children’s Palliative Care Instrument (Widger, 2015) [53] |
9. Care teams are all working towards the same goals for my child’s care | Continuity of care | 24.10 | Quality of Children’s Palliative Care Instrument (Widger, 2015) [53] |
10. Care team gives me enough information to make good health care decisions | Communication between family and care team | 23.84 | Parental PELICAN Questionnaire (Zimmerman, 2015) [22]; Community PedsCare HRQoL instrument (Goldhagen, 2016) [24] |
11. Care team helps me to advocate for my child’s needs | Relationship between family and care team | 23.20 | New item (PPHC expert panel, Sept 2018) |
12. Access to on-call service from palliative care or hospice team | Access to care team | 23.20 | Parental Questionnaire 1 (Vollenbroich, 2012) [21] |
13. I have access to care provider who can coach or guide me to care for my child | Care coordination | 22.67 | Quality of Children’s Palliative Care Instrument (Widger, 2015) [53] |
14. Care team looks at all of my child’s needs | Continuity of care | 20.38 | Quality of Children’s Palliative Care Instrument (Widger, 2015) [53] |
15. It is easy to contact the care team | Access to care team | 20.23 | Quality of Children’s Palliative Care Instrument (Widger, 2015) [53] |
16. Knowledge/skills of nurse(s) | Knowledge and skills of care team providers | 18.72 | Parental Questionnaire 1 (Vollenbroich, 2012) [21] |
17. Information shared between me and the care team is clear | Communication between family and care team | 18.63 | Quality of Children’s Palliative Care Instrument (Widger, 2015) [53] |
18. Knowledge/skills of physician(s) | Knowledge and skills of care team providers | 18.34 | Parental Questionnaire 1 (Vollenbroich, 2012) [21] |
19. Care team provides information about treatments for my child’s pain and other symptoms | Physical aspects of care: Communication | 17.19 | Seattle Pediatric Palliative Care Project evaluation (Hays, 2006) [30] |
20. Care team takes time to listen carefully | Communication between family and care team | 16.83 | Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey [54] |
21. Care team helps me to use non-drug measures to ease my child’s pain and other symptoms | Physical aspects of care: Symptom management | 15.62 | Parental PELICAN Questionnaire (Zimmerman, 2015) [22] |
22. Care team is kind, caring, and respectful | Relationship between family and care team | 13.71 | Bereaved Family Survey [32] |
23. Care team helps me adapt my home to support my child’s care needs | Care coordination | 13.38 | |
24. Care team provides emotional support for my child | Psychological/emotional aspects of care: Child | 12.38 | Quality of Children’s Palliative Care Instrument (Widger, 2015) [53] |
25. Care team provides opportunities for my child to talk about his/her worries and fears | Psychological/emotional aspects of care: Child | 12.31 | New item (developed based on recommendation from dissertation committee; Jan 2019) |
26. Care team helps me hope for best outcome while also helping me prepare in case that outcome does not happen | Psychological/emotional aspects of care: Parent(s) | 11.11 | Quality of Children’s Palliative Care Instrument (Widger, 2015) [53] |
27. I can talk about my child’s end of life with care team | Communication at end of life | 11.11 | Parental Questionnaire 1 (Vollenbroich, 2012) [21] |
28. Care team has prepared me for what my child’s last weeks of life may be like | Caregiver support at the end of life | 9.01 | Parental PELICAN Questionnaire (Zimmerman, 2015) [22] |
29. Care team talks with me about my fears and worries | Psychological/emotional aspects of care: Parent(s) | 8.88 | Parental PELICAN Questionnaire (Zimmerman, 2015) [22] |
30. My child receives complementary and alternative medicine | Physical aspects of care: Symptom management | 7.53 | Parental PELICAN Questionnaire (Zimmerman, 2015) [22] |
31. Care team helps me talk about my child’s preferred place of death | Communication at end of life | 6.42 | Quality indicators for paediatric palliative care (Charlebois) [55] |
32. Care team provides emotional support for my other children | Psychological/emotional aspects of care: Sibling(s) | 6.20 | Quality of Children’s Palliative Care Instrument (Widger, 2015) [53] |
33. Care team helps me cope with the stress of caregiving | Social aspects of care: Parent(s) | 5.19 | NCP 4th Edition Domains [25] |
34. Care team provides emotional support for me | Psychological/emotional aspects of care: Parent(s) | 4.53 | Quality of Children’s Palliative Care Instrument (Widger, 2015) [53] |
35. Care team helps me find resources to cope with financial strain | Practical aspects of care | 4.41 | NCP 4th Edition Domains [25]; Massachusetts PPCN Evaluation (Bona, 2011) [11] |
36. Care team helps me talk about whether to stop life-sustaining measures | Ethical and legal aspects of care | 3.76 | Parental PELICAN Questionnaire (Zimmerman, 2015) [22] |
37. Knowledge/skills of social worker(s) | Knowledge and skills of care team providers | 3.18 | Parental Questionnaire 1 (Vollenbroich, 2012) [21] |
38. Care team helps me talk with my child about death and dying | Communication at end of life | 2.58 | Parental Questionnaire 1 (Vollenbroich, 2012) [21] |
39. Care team helps prepare my child for school | Social aspects of care: Child | 0.47 | Seattle Pediatric Palliative Care Project evaluation (Hays, 2006) [30] |
40. Care team provides emotional support for my child’s extended social network (e.g., classmates, neighbors, extended family) | Emotional aspects of care: Extended social network | 0.22 | New item (PPHC expert panel, Sept 2018) |
41. Care team is respectful of my spiritual/religious beliefs | Spiritual, religious, and existential aspects of care | 0.20 | Bereaved Family Survey [32] |
42. Care team is respectful of my cultural beliefs/practices | Cultural aspects of care | 0.18 | Bereaved Family Survey [32] |