TABLE 3.

Illustrative Quotations From Theme 2: Communication Content: Complex therapies

Theme 2—Communication Content: Complex therapies
The “big picture”	I still to this day don’t understand what happened. (7)
	It [a family meeting] would give us a time to sit down and really get an understanding of what was going on, like a comprehensive understanding, as opposed to bits and pieces here and there. To really understand what the plan was for her, because a lot of times the plan changed. I understand it’s dynamic, but it always seemed to be something we were chasing. We didn’t really know what was what was going on, or what we needed to really look for. (13)
	I was so overloaded from medical terminology that I didn’t understand what was happening. They were able to be like, “Here’s the medical term, but this is what it means.” (4)
Emotions and information	We were too much in our own grief, in our own kind of like emergency, like in shock. (18)
	[Speaking about the MRI] I wish they had been a little gentler with us, it was very clinical, very cold, very sterile…they put her in a capsule that looks like a spaceship and wheeled her into another room where we couldn’t watch and we couldn’t be with her…we had no idea what was going on. (5)
	I would have loved for a therapist or a counselor, somebody to help me process everything that had happened. (16)
Uncertainty about novel therapies	I understand the treatment is so young there’s not much on what to expect. (7)
	We didn’t know anyone who had anything like [the cooling protocol]. We felt very alone; no one that we could talk to and see their experiences…that was difficult. (2)
	I remember waking-up [from cesarean delivery] and my husband came in and said, “I’m going to have to go because [baby] is being transferred…she’s had some trauma to her brain because of lack of oxygen. This protocol has been recommended to us and I think we should do it. I signed the papers.” And then he was gone. (3)

Numbers after quotes represent participant identifiers.