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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