Table 3 Parents’ assessment of healthcare services for CRD.
Very bad N (%) | Rather bad N (%) | I do not know N (%) | Rather good N (%) | Very good N (%) | |
|---|---|---|---|---|---|
Assistance for CRD families from government and social institutions | 260 (28.1) | 345 (37.3) | 128 (13.8) | 170 (18.4) | 22 (2.4) |
Quality of health care provided to CRD | 78 (8.4) | 248 (26.8) | 63 (6.8) | 433 (46.8) | 103 (11.2) |
Availability of medical specialists’ care (neurologists, geneticists, psychologists) for CRD | 214 (23.2) | 349 (37.7) | 66 (7.1) | 244 (26.4) | 52 (5.6) |
Accessibility of medications for CRD | 156 (16.8) | 216 (23.4) | 216 (23.4) | 300 (32.4) | 37 (4) |
Availability of financial assistance to pay for CRD rehabilitation | 290 (31.4) | 320 (34.6) | 153 (16.5) | 141 (15.2) | 21 (2.3) |
Availability of medical information on child’s RD | 268 (29) | 250 (27) | 53 (5.7) | 285 () | 69 (7.5) |
Support for family from CRD healthcare workers | 168 (18.2) | 304 (32.9) | 106 (11.4) | 300 (32.4) | 47 (5.1) |
Doctors’ knowledge concerning RD affecting your child | 300 (32.4) | 303 (32.8) | 53 (5.7) | 193 (20.9) | 76 (8.2) |
Doctors provision of practical information regarding how to manage their children’s RD | 197 (21.3) | 261 (28.2) | 112 (12.1) | 267 (28.9) | 88 (9.5) |
Doctors/neurologists/geneticists-family communication skills | 94 (10.2) | 230 (24.9) | 101 (10.9) | 400 (43.2) | 100 (10.8) |
Emotional support provided to caregivers by doctors | 155 (16.7) | 295 (31.9) | 147 (15.9) | 268 (29) | 60 (6.5) |
Doctors’ ability to establish an empathetic understanding of caregivers | 109 (11.8) | 238 (25.7) | 114 (12.3) | 382 (41.3) | 82 (8.9) |
Interaction with genetic clinic | 104 (11.2) | 140 (15.1) | 212 (22.9) | 338 (36.5) | 131 (14.2) |
Interaction with psychological clinic | 99 (10.7) | 125 (13.5) | 425 (45.9) | 220 (23.8) | 56 (6.1) |
