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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%  
  1. Fisher's exact test; significance p < 0,05*