TABLE 2.

Themes generated from responses to the question: “If you didn’t feel prepared for the kind of medical and/or emotional problems your child experienced, what would have been helpful?”

Theme	Example quote	Number of parents using this codea n = 79 (%)
Quality communication about prognosis	“More honesty from her doctors. They should give more realistic probable outcomes about treatment not working instead of pushing the child further when it obviously wasn’t working.” “In our case, physicians did not share with us that our son was dying. We learned this from two trusted nurses. Pain, abdomen filling up with fluid, and difficulty breathing were major problems our son faced at the end of his life. More active dialoguing with us about each of these problems could have resulted in better overall management of his traumatic death.”	10 (13%)
Quality communication about medical events and changes to expect at the end of life	“I think the ICU team saw our history (multiple relapses, clinical trials, advanced cancer) and assumed we knew more than we did. Instead we had never experienced intubation or any breathing support and it would have been helpful to have been given more information on what to expect.” “…information about what happens to the child’s body ….. specific real information the things no one wants to talk about, but we face and need to know.” “The option of telling a parent what to expect physically should be given, allowing the parent to ask when they are ready.” “We wanted to have family come but didn’t have time because the team didn’t talk with us about what to expect or tell us we should prepare family.”	34 (43%)
Understanding and compassion from providers	“…. I wish that the psychologist and other team members would have spoken to [my child] during his illness to address any concerns that he had.” “More compassion, patience, more questions asked to make sure we knew what was happening.” “Discussions with others that had experienced loss.”	23 (29%)
Psychological support/counseling	“A [counselor] was made available to my daughter during that process. Her counseling ended shortly before her terminal diagnosis and it was never revisited. Parents are in such an emotional state, it didn’t occur to me to ask.” “My child was heavily medicated during his final days. I had to seek them out (psychologist and other team members) to talk to not the other way around.”	13 (16%)
Understanding and compassion from providers	“We need doctors, nurses and social workers who truly understand what this is like for the child and the family. Too often we were made to feel that we were being too demanding. My son suffered too much and was never treated as the courageous young man he was.” “I don’t think the support needs to be clinical. It just needs to be caring people, caring for people, and that’s what we received.”	9 (11%)
Additional services	“Pain and sedation meds at my home BEFORE she needed them. Waiting for people to answer voicemails and to have time come assess her, is waiting too long.” “For someone to take over the everyday living things so that I could spend more time with her.”	7 (9%)

^aNumbers in this table reflect the percentage and number of responses to this theme. Parents often reflected more than one theme.