Table 1.
Caregivers' Satisfaction with the Quality of Care and Their Adjustment before and after Involvement of Specialized Pediatric Palliative Home Care
| |
|
Involvement of PPHC |
|||
|---|---|---|---|---|---|
| Assessment instrument | Before Median (IQR) | After Median (IQR) | n | p | |
| Burden relief for caregivers |
NRS |
2.0 (3) |
9.0 (3) |
40 |
<0.001a |
| Psychological support |
NRS |
5.0 (3) |
8.5 (2) |
40 |
<0.001a |
| Support for activities of daily living |
NRS |
4.0 (4) |
8.0 (3) |
40 |
<0.001a |
| Communication with the child |
NRS |
7.0 (3) |
8.0 (3) |
40 |
<0.001a |
| Communication with the general practitioner |
NRS |
8.0 (3) |
8.0 (3) |
40 |
n. s. |
| Communication with local HCPs |
NRS |
8.0 (2) |
9.0 (2) |
40 |
<0.050b |
| Quality of medical information |
NRS |
7.0 (2) |
10.0 (0) |
40 |
<0.001a |
| Quality of medical care |
NRS |
6.0 (2) |
10.0 (0) |
40 |
<0.001a |
| Quality of nursing information |
NRS |
7.0 (2) |
10.0 (0) |
40 |
<0.001a |
| Quality of nursing care |
NRS |
7.0 (2) |
10.0 (0) |
40 |
<0.050b |
| Support in provision of care for the patient |
NRS |
5.0 (3) |
10.0 (0) |
40 |
<0.001a |
| Clarification of important questions on the diagnosis and prognosis |
NRS |
5.0 (3) |
10.0 (0) |
40 |
<0.001a |
| Support in socio-legal issues (e.g., entitlement to benefits) |
NRS |
2.0 (5) |
10.0 (2) |
40 |
<0.001a |
| Spiritual care |
NRS |
6.5 (3) |
7.0 (2) |
40 |
n. s. |
| Subjective burden due to patients' disease |
NRS |
10.0 (2) |
7.0 (3) |
40 |
<0.001a |
| Patients' QoL |
NRS |
2.5 (2) |
4.0 (4) |
40 |
<0.001a |
| Symptom control |
NRS |
5.0 (3) |
9.0 (2) |
40 |
<0.001a |
|
Caregivers' QoL |
|
|
|
|
|
| |
NRS |
3.0 (3) |
5.0 (4) |
40 |
<0.001a |
| |
QOLLTI-F total score |
5.8 (1) |
7.1 (1.3) |
40 |
<0.001 |
|
Caregivers' stress and burden |
|
|
|
|
|
| |
HADS total score |
28.0 (8.5) |
19.0 (6) |
40 |
<0.001 |
| HPS total score | 20.0 (10.5) | 14.5 (8.8) | 40 | <0.001 | |
a
Bonferroni-corrected p<0.000056.
b
Bonferroni-corrected p<0.002778.
Assessed by Wilcoxon signed-rank test [two-tailed].
HADS, Hospital Anxiety and Depression Scale; HPS, Häusliche Pflegeskala (home care scale);
IQR, interquartile range; NRS, numeric rating scale; QOLLTI-F, Quality of Life in Life-Threatening Illness–Family Carer Version; PPHC, Pediatric Palliative Home Care.