Table 1.
Content of CDHa websites (N=91).
|
|
Number of websites (%) | ||
| CDH information |
|
||
|
|
Gave description or definition of CDH | 86 (95) | |
|
|
Mentioned types of CDH | 52 (57) | |
|
|
Discussed how CDH is diagnosed | 74 (81) | |
|
|
Discussed prenatal care for CDH | 55 (60) | |
|
|
Mentioned admission to the neonatal intensive care unit | 77 (85) | |
|
|
Discussed potential need for a breathing tube/intubation | 73 (80) | |
|
|
Discussed postnatal surgery | 79 (87) | |
|
|
Discussed variation in clinical acuity | 56 (62) | |
|
|
Discussed possibility of death from CDH | 60 (66) | |
| Potential complication of CDH |
|
||
|
|
Discussed risk of neurodevelopmental delays from CDH | 45 (49) | |
|
|
Discussed risk of chronic lung disease | 46 (51) | |
|
|
Discussed risk of hearing difficulties due to CDH | 26 (29) | |
|
|
Discussed risk of gastroesophageal reflux | 49 (54) | |
|
|
Discussed the potential for the hernia to recur | 19 (21) | |
|
|
Discussed risk of failure to thrive/inability to gain weight | 35 (38) | |
| Treatment option |
|
||
|
|
Discussed potential for ECMOb | 66 (73) | |
|
|
If mentioned ECMO, site described complications of ECMO | 21 (23) | |
|
|
Discussed the possibility of prenatal surgery | 35 (38) | |
|
|
Discussed possibility of termination of pregnancy | 13 (14) | |
| Support system information |
|
||
|
|
Contained additional reading material for parents regarding the diagnosis of CDH | 24 (26) | |
|
|
Discussed financial support | 15 (16) | |
|
|
Discussed housing options while in the neonatal intensive care unit | 12 (13) | |
|
|
Contained emotional/personal support resources for families | 21 (23) | |
|
|
Provided information regarding mental health resources | 9 (10) | |
aCDH: congenital diaphragmatic hernia.
bECMO: extracorporeal membrane oxygenation.