Table 2 Association between psychological trauma and emotional and environmental aspects at the moment of diagnosis reported by family caregivers of SMA patients
From: Communicating the Spinal Muscular Atrophy diagnosis to children and the principle of autonomy
Variables | Has the investigation trajectory until the moment of diagnosis left any psychological trauma? | p-value | |||
|---|---|---|---|---|---|
NO | YES | MAYBE | |||
n/% | n/% | n/% | |||
Caregiver present during the trajectory to the Spinal Muscular Atrophy diagnosis | Yes | 18 | 24 | 8 | – |
36.0% | 48.0% | 16.0% | |||
No | 0 | 0 | 0 | ||
0.0% | 0.0% | 0.0% | |||
Feeling of inclusion in the health services sought regarding the environment and health professionals | No | 2 | 10 | 1 | 0.135 |
15.4% | 76.9% | 7.7% | |||
Partially | 7 | 7 | 2 | ||
43.8% | 43.8% | 12.5% | |||
Yes | 9 | 7 | 5 | ||
42.9% | 33.3% | 23.8% | |||
The diagnostic environment was suitable | No | 0 | 2 | 0 | 0.289 |
0.0% | 100.0% | 0.0% | |||
Partially | 2 | 6 | 1 | ||
22.2% | 66.7% | 11.1% | |||
Yes | 16 | 16 | 7 | ||
41.0% | 41.0% | 17.9% | |||
Understood the diagnosis | No | 1 | 2 | 0 | 0.622 |
33.3% | 66.7% | 0.0% | |||
Partially | 4 | 8 | 1 | ||
30.8% | 61.5% | 7.7% | |||
Yes | 13 | 14 | 7 | ||
38.2% | 41.2% | 20.6% | |||
Caregivers know about the diagnosis | No | 0 | 0 | 0 | – |
0.0% | 0.0% | 0.0% | |||
Yes | 18 | 24 | 8 | ||
36.0% | 48.0% | 16.0% | |||
Person responsible for telling the diagnosis to the patient | Doctor | 7 | 3 | 1 | 0.043* |
63.6% | 27.3% | 9.1% | |||
Other | 0 | 0 | 1 | ||
0.0% | 0.0% | 100.0% | |||
Father/ Mother | 11 | 21 | 6 | ||
28.9% | 55.3% | 15.8% | |||
Medical support to help caregivers communicate the diagnosis to the child | No | 7 | 9 | 4 | 0.476 |
35.0% | 45.0% | 20.0% | |||
Partially | 4 | 4 | 3 | ||
36.4% | 36.4% | 27.3% | |||
Yes | 7 | 11 | 1 | ||
36.8% | 57.9% | 5.3% | |||
Main sources of guidance regarding the disease of the patient | Patients association | 2 | 10 | 2 | 0.344 |
14.3% | 71.4% | 14.3% | |||
Scientific sources | 1 | 2 | 0 | ||
33.3% | 66.7% | 0.0% | |||
Doctor | 11 | 9 | 4 | ||
45.8% | 37.5% | 16.7% | |||
Other Health Professional | 2 | 2 | 0 | ||
50.0% | 50.0% | 0.0% | |||
Other | 0 | 1 | 1 | ||
0.0% | 50.0% | 50.0% | |||
Social Network | 2 | 0 | 1 | ||
66.7% | 0.0% | 33.3% | |||