Table 3 Summary findings

Expectations for neuroimaging

Caregivers displayed a spectrum of expectations for the neuroimaging research, ranging from hopeful to conflicted expectations. In some cases, these expectations appeared to bear on caregivers’ acceptance of the neuroimaging results

“My hope is that this will help research understand that he wasn’t a vegetative brain, he wasn’t dead. Number one, that diagnosis was wrong, 100%. It was wrong.” (P1a)

“The testing maybe would benefit [patient] in that people will have a better understanding of his brain function […] But that’s about it. I mean, it’s research, right?” (P2a)

Reactions to evidence of preserved cognition

Caregiver reactions to neuroimaging evidence of preserved cognition were multifaceted. Caregivers were often pleased with this information, but some found it difficult to process and share with others

“I’m talking to him more as an adult now. He doesn’t want to be talked to like a teenager. The more you understand, the more you know what he understands, and maybe by talking to him at a more adult level it helps him too.” (P3b)

“[My in-laws equated] there was brain activity with he’s waking up tomorrow.” (P5b)

Reactions to null results

Caregivers were either accepting or resistant to null results. Caregivers who were resistant challenged the validity of the neuroimaging methods. In contrast, no caregiver who received evidence of preserved cognition challenged the results. Some caregivers also expressed emotional distress in the face of continued uncertainty

“What I do with [patient] from a sensory stimulation perspective is a lot more in-depth and aggressive, because I use acupressure therapy and muscle stimulation. They didn’t do anything like smell stimulation. I do that all the time, and I see a significant amount of reaction to that.” (P1b)

“I have to know what’s going on so I could provide whatever my son needs. I just wanted to know if my son was in pain. I still feel the same. I’m lost and I’m drained.” (P10b)

Understanding of the results and study

Caregivers generally understood the neuroimaging research and results. If caregivers initially misunderstood the results, they felt comfortable asking questions of the neuroimaging research team

“They’re learning more about the brain, so it’s a matter of how people are treated. I think down the road there’s a lot of hope for different technologies. And that will change how people are treated.” (P3b)

“I didn’t understand a lot, [but] when I spoke to [researcher] she broke it down and said, ‘Okay, this is what it is. There was some type of activity.’” (P5b)