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