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Table 2 Respondents’ rank order of goals of care for children with LLNDDs in Rounds 2 & 3

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

Goal R2 Priority R2
Mean
R2 Median R2 IQR n R3 Priority R3
Mean
R3 Median R3 IQR n W p
Achievement of the best possible quality of life for the child** 1 1.92 1.00 1.00 13 1 1.17 1.00 0.00 12 −1.34 0.18
Open & honest communication with the family** 3 4.38 4.00 2.50 13 2 3.75 3.00 1.75 12 −1.60 0.11
Achievement of the child’s full potential within the limits of the illness 4 5.15 5.00 6.00 13 3 3.90 3.50 3.00 12 −1.60 0.11
Optimum symptom management** 5 5.69 5.00 5.50 13 4 4.00 4.00 2.00 12 −1.86 0.06
The child is cared for at home 2 4.15 4.00 4.0 13 5 4.08 3.00 3.5 12 0.00 1.00
Parents are supported with the provision of care 7 6.54 6.00 2.50 13 6 6.75 7.00 2.75 12 −1.34 0.18
Promotion of normality for the child and family 6 6.08 5.00 6.00 13 7 6.83 6.00 3.75 12 −1.07 0.29
Provision of appropriate respite 8 6.62 7.00 5.00 13 8 7.25 7.50 3.50 12 −0.45 0.66
The family continues to function as a unit and enjoy life 9 6.85 5.00 5.00 13 9 7.75 8.50 3.75 12 −2.03 0.04
Inappropriate medical interventions are minimized 11 8.00 8.00 4.50 13 10 8.58 9.50 3.00 12 −1.22 0.22
Achievement of a seamless web of care 10 7.54 7.00 2.50 13 11 8.67 9.00 3.75 12 −1.60 0.11
The child’s life is prolonged** 12 11.54 12.00 1.00 13 12 11.50 12.00 0.75 12 0.00 1.00
The family is provided with the hope that things will get better** 13 11.69 13.00 1.00 13 13 11.83 13.00 1.00 12 −1.34 0.18
  1. **Indicates Consensus achieved in R3
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