Table III.
Decisional regret about participation in an autopsy-related research study among bereaved parents of children with diffuse intrinsic pontine glioma
| It was the right decision |
I regret the choice that was made |
I would go for the same choice if I had to do it over again |
The choice did a lot of harm |
The decision was a wise one |
|
|---|---|---|---|---|---|
| Strongly agree | 31 (94%) | 0 | 27 (82%) | 0 | 27 (82%) |
| Agree | 2 (6%) | 0 | 3 (9%) | 1 (3%)a | 5 (15%) |
| Neutral | 0 | 1 (3%) | 1 (3%) | 3 (9%) | 1 (3%) |
| Disagree | 0 | 5 (15%) | 0 | 6 (18%) | 0 |
| Strongly disagree |
0 | 27 (82%) | 0 | 23 (70%) | 0 |
| Left blank | 0 | 0 | 2 (6%) | 0 | 0 |
| Comments | “It was the right thing to do. If you can help find a cure for cancer you must give everything you can to that cause.” |
“I believe we made the best choice possible during such a traumatic time in our lives. I would only encourage other families to also donate the tumor that has affected their lives!” |
“I feel that I would do it again for the reason that if you can help the next person then why not.” |
“The choice did no harm. … my daughter looked beautiful at her funeral.” |
“It was the only choice that made sense after watching our son die. I hope our son’s gift helps to find a cure.” |
a
Parent quote revealed that this response referred to the child’s therapeutic trial, not the autopsy trial.