Table 1.
Main characteristics of included patients, relatives, and doctors
| Characteristics | Patients | Relatives | Doctors |
|---|---|---|---|
| (N = 36), n (%) | (N = 104), n (%) | (N = 71), n (%) | |
| Setting | |||
| Neonatal intensive care unit | 12 (33) | 33 (32) | 22 (31) |
| Pediatric intensive care unit | 12 (33) | 30 (29) | 35 (49) |
| Adult intensive care unit | 12 (33) | 41 (39) | 14 (20) |
| Age (years) | |||
| Premature | 11 (30) | – | – |
| 0–1 | 6 (16) | – | – |
| 1–4 | 1 (3) | – | – |
| 4–12 | 2 (6) | – | – |
| 12–16 | 2 (6) | – | – |
| 16–21 | 2 (6) | – | – |
| 21–35 | – | – | – |
| 35–50 | 3 (8) | – | – |
| 50–65 | 5 (14) | – | – |
| 65 + | 4 (11) | – | – |
| Gender | |||
| Male | 17 (47) | 41 (39) | 28 (40) |
| Female | 19 (53) | 63 (61) | 43 (60) |
| Main diagnosis | |||
| Prematurity | 5 (14) | – | – |
| Prematurity + congenital disorder + acute illness | 1 (3) | – | – |
| Perinatal asphyxia | 4 (11) | – | – |
| Congenital disorder | 13 (36) | – | – |
| Acute illness | 11 (30) | – | – |
| Cancer + acute illness | 2 (6) | – | – |
| Neurological damage | |||
| Yes | 24 (67) | – | – |
| No | 12 (33) | – | – |
| Total duration of care in the intensive care unit | |||
| 0–24 h | 5 (14) | – | – |
| 1–7 days | 10 (28) | – | – |
| 1–4 weeks | 16 (44) | – | – |
| 1–3 months | 5 (14) | – | – |
| Relation to the patient | |||
| Parent | – | 46 (44) | – |
| Grandparent | – | 8 (7) | – |
| Partner | – | 7 (7) | – |
| Child | – | 9 (9) | – |
| Sibling | – | 8 (7) | – |
| Brother in law/sister in law | – | 2 (2) | – |
| Aunt/uncle/cousin | – | 10 (10) | – |
| Friend | – | 4 (4) | – |
| Other | – | 5 (5) | – |
| Unknown | – | 5 (5) | – |
| Ethnic background | |||
| Dutch | – | 86 (83) | – |
| Moroccan | – | 4 (4) | – |
| Syrian | – | 1 (1) | – |
| Surinamese | – | 1 (1) | – |
| Ghanese | – | 3 (3) | – |
| Pakistani | – | 2 (2) | – |
| Turkish | – | 2 (2) | – |
| Ethiopian | – | 2 (2) | – |
| Unknown | – | 3 (3) | – |
| Medical specialty | |||
| Neonatologist | – | – | 14 (20) |
| Pediatric intensivist | – | – | 9 (13) |
| Pediatrician | – | – | 15 (21) |
| Pediatric neurologist | – | – | 7 (10) |
| Pediatric cardiologist | – | – | 3 (4) |
| Metabolic pediatrician | – | – | 2 (3) |
| Pediatric pulmonologist | – | – | 1 (1) |
| Intensivist | – | – | 9 (13) |
| Anesthesiologist | – | – | 4 (6) |
| Internist-hematologist | – | – | 1 (1) |
| Neurosurgeon | – | – | 3 (4) |
| Neurologist | – | – | 1 (1) |
| Unknown | – | – | 2 (3) |
| Role | |||
| Resident | – | – | 20 (28) |
| Fellow | – | – | 13 (18) |
| Staff | – | – | 36 (51) |
| Unknown | – | – | 2 (3) |