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Table 3 Respondents Rank Order of Priorities for Improving Services to Children with LLNDs and their Families Rounds 2 & 3

From: Integration of palliative care in services for children with life-limiting neurodevelopmental disabilities and their families: a Delphi study

Required Service Change R2 Priority R2 Mean R2 Median R2 IQR n R3 Priority R3 Mean R3 Median R3 IQR n W P
A greater level of communication between all the health professionals involved in the care of the child** 3 5.77 4.00 7.00 13 2 3.75 3.00 1.75 12 − 1.47 0.14
A key worker available to every family** 2 4.92 3.00 8.50 13 3 3.92 2.50 1.00 12 −0.96 0.34
A single care plan for use across all services** 1 4.38 3.00 5.00 13 1 2.75 1.00 1.00 12 −2.23 0.03
A greater level of coordination & integration of the services involved in the care of the child 5 7.08 6.00 7.00 12 4 5.50 5.00 3.50 12 −0.94 0.34
A single point of contact for information for families 7 8.62 8.00 8.00 13 10 9.33 9.00 6.50 12 −0.38 0.71
Less bureaucracy with regards to the family’s entitlements 13 11.00 12.00 7.50 13 14 11.83 12.50 6.25 12 −0.55 0.58
Access to palliative care in a timely and efficient manner 6 7.85 5.00 3.00 13 6 7.33 6.00 5.25 12 −0.55 0.58
Parent held medical records 18 12.92 15.00 9.50 13 17 14.83 17.50 7.75 12 −1.83 0.07
A national directory of services 17 12.85 13.00 2.00 13 18 14.92 15.00 4.75 12 −2.04 0.04
Improved education for community-based health professionals 14 11.46 13.00 5.50 13 13 11.75 13.00 5.50 12 −0.92 0.36
A specialist pediatric palliative care consultant to act as a resource when required 4 6.46 5.00 4.00 13 5 7.08 5.50 6.25 12 −0.68 0.50
A formal care coordinator in every HSE area 11 9.54 10.00 9.00 13 11 10.75 11 6.5 12 −0.68 0.50
Medical priority status in A& E and OPD departments 12 9.77 9.00 8.50 13 12 10.92 12.00 8.25 12 −1.60 0.11
The development of community based pediatric palliative care teams 8 8.85 8.00 9.50 13 9 9.33 7.50 7.25 12 −0.37 0.72
Improved respite facilities 9 8.69 7.00 7.50 13 8 9.17 9.50 4.00 12 −0.18 0.85
A less protracted system for ordering essential equipment 16 12.38 12.00 9.00 13 16 12.17 12.50 6.75 12 −.32 0.76
Improved communication between acute and community services 10 9.23 9.00 10.00 13 7 8.58 9.00 6.00 12 −0.68 0.47
National standards of care 15 11.54 13.00 8.50 13 15 12.00 15.50 9.5 12 −2.03 0.04
  1. **Indicates consensus achieved in R3
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