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Table 1 Responses to statements regarding the integration and coordination of current services including palliative care

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

Service Integration and Coordination R2 Mean R2 Median R2 IQR n R3 Mean R3 Median R3 IQR n Agreement W p
1. There is poor communication between acute services and community-based services in the care of these children** 4.00 4.50 1.75 12 4.08 4.00 1.00 12 83% −1.41 0.16
2. General Practitioners lack the experience and expertise necessary to deal effectively with these children 3.92 4.00 2.00 12 4.08 4.00 1.75 12 75% −1.00 0.32
3. There is poor coordination and integration of services involved in the care of these children and their families 4.08 4.50 1.75 12 4.00 4.00 1.75 12 75% −0.82 0.41
4. Acute services are not aware of the range of services that are available to children and their families in the community** 3.54 4.00 1.00 13 4.00 4.00 0.00 12 92% −1.34 0.18
5. Families receive conflicting information about their child from different services 3.62 4.00 1.00 13 3.58 4.00 1.00 12 68% −1.00 0.32
6. There is collaboration between the different services regarding the goals of care for these children 2.54 2.00 3.00 13 2.00 2.00 2.00 11 18% −1.34 0.18
7. Medical teams lack interest in these children because of their limited prognosis 2.75 2.00 2.75 12 4.42 2.00 1.75 12 25% 0.00 1.00
8. Children with life-limiting neurodevelopmental disabilities often undergo futile investigations and procedures 3.50 3.50 2.50 12 3.42 3.50 1.00 12 50% 0.00 1.00
9. Medical staff are reluctant to discuss the fact that children are “life-limited” with parents 3.92 4.00 1.75 12 3.67 4.00 2.75 12 67% 0.00 1.00
10. Medical teams fail to recognize the palliative care needs of the child 3.85 4.00 2.50 13 3.83 4.00 2.00 12 67% −1.00 0.32
11. Palliative care is only considered late in the child’s condition or in crisis management** 4.50 4.50 1.00 12 4.25 4.00 1.00 12 92% 0.00 1.00
12. Access to specialist palliative care services is readily available if it is required 2.46 2.00 3.00 13 2.42 2.00 1.50 12 25% −1.41 0.16
  1. Scale: 1 Strongly Disagree – 5 Strongly Agree; ** Indicates Agreement and Consensus achieved in R3 Response Stability achieved on all items in R3
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