Parents of children with serious illness are more resilient than credited

摘要

There is A broad perception that children with advanced illness, their parents, and families are so emotionally fragile that we must protect them from research. For example, in 1996 I submitted a protocol to my institutional review board (IRB) aiming to describe the quality of care delivered to children with cancer at end of life through a survey of bereaved parents. The protocol was initially deferred, then conditionally approved, and after approximately one year, was finally fully approved. One requirement of the IRB was that I wait a minimum of one year from the death of the child before inviting a parent to participate.