Table 2.

Summary of parent comments.

Theme	Example of comments
Understanding brain MRI results
MRI looks for or shows something	“To see if there was brain damage.” “If there are black or dark shadows, this implies that this part of the brain is dead. We do not want to see dark zones on the brain.”
Causes of damage	“To verify the after effects of hypoxia to the brain following delivery” “It was to verify that he did not have any necrosis following a possible lack of oxygen”
Limitations of MRI	“One was done after he was born and another one needed to be done after 10 days to get more [clear] image”
Protocol	“Someone told me that MRI was part of a protocol of tests to be done after the cooling.”
MRI for research	“My baby was part of a study group and they wanted to see the behavior of the damage to the brain.”
Communicating brain MRI results
Communication skills	“Again, eliminate all possible delays and inform the parents as quickly as possible.” “To have access to the images (MRI)” “I believe that it is very important to not go too far, only that which is certain must be discussed.” “To offer parents to be accompanied during the discussion because of the emotional implications.” “Maybe discussing it in a place other than the critical care unit would be good. With all the noise from the incubators and machines in the room, it was not so easy.” “Be sure to have empathy and that the parent is capable, emotionally and physically, of understanding what you are explaining to them.”
MRI reassuring	“Reassuring” “It said that it was very positive, so we could be optimistic.”
Uncertainty	“There was no damage, therefore it was reassuring, but I was told that nothing could be predicted in advance for sure. There was too much uncertainty.”
Multidisciplinary	“A meeting with the two parents, the doctor and the neurologist, with concrete explanations and the supporting images”
Privacy	“We were the two parents and it was our moment. This did not concern anyone, but us.”
Support	“Have face-to-face meeting with the MRI images and a social worker or someone else to support us.” “Always meet face-to-face with the family, do not underestimate the impact that these results have on parents, offer psychological support.”
Follow-up	“The pediatrician who did my baby's follow-up responded to many of my questions that remained unanswered following my baby's hospitalization.”
Hope	“Do not make too grave a diagnosis too quickly. Put a little more stress on what we can do to help our baby progress.”
Comfort	“The pediatrician's call brought us a little relief and decreased the stress we endured all across the hospitalization.”
End-of-life decision-making	“As [NAME] was likely not to breathe or eat on his own, we had to decide what we would do in the following days. We experienced immense anger, sadness, and incomprehension about the precarious situation that he was in.” “We started to talk about funerals and getting him baptized in the event that he dies.”
Good parents	“I remember that they told us that she could have a developmental delay. It tore me apart, and we worked with the little one to provide the most encouragements and provide her with every possible chance. It went super well and she is very intelligent.”
Solutions
Communication skills	“Teach bedside manner. The doctor was extremely rude. The doctor with her looked annoyed that I was here and asked who I was and what I was doing there. Needless to say, I was in tears.” “A better attitude in the face of the potential barriers that await us.”
Hope	“After the first MRI, we had a big hope that the baby will be fine and will grow up normally. [It was still a] stress but comforting to know what to expect.”
Address stress	“It was an unbelievable stress for about two months. My son was in critical care for 30 days. I lost my beard hair, my convictions and my illusions”
Address forgetting or not remembering	“I am personally questioning my own memory. I remember that they talked to me, but I do not remember who, when, or where, I am sorry. I think that my husband might have been there, still not sure [….] it is definitely necessary to be accompanied by someone such as a partner and to repeat, because I asked my husband and it is unclear to him too. Maybe because the results were neither negative nor positive.”