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