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Table 4 Items Prioritized by Parents (Phase 3)

From: Developing a family-reported measure of experiences with home-based pediatric palliative and hospice care: a multi-method, multi-stakeholder approach

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 IOM 2003 report [17]; NHPCO 2019 standards [26]
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]
  1. aBolded items were retained for evaluation in next phase based on weighted item scores
  2. bSee Table 1 for domain definitions
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BMC Palliative Care

ISSN: 1472-684X

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