“…Parents seek honest, clear, and complete information 42,44–50 to be able to actively participate in decision- making 47,51 and in the physical care and comfort to their child, 43,44,47 as well as to cope with uncertainty and fear of a poor outcome.. 42,49,52 Access to information can make parents feel more prepared, less helpless, and give them a sense of control. 42,44,49,52 Parents reported that they wanted to receive information even when it was potentially distressing 42,43,53 and wanted to be informed about decisions even when clinicians are the primary decision-makers.…”