TABLE 1

Parent Interview Questions

1. Please tell me about the symptom/s that your child had and that concerned you the most on the day that your child died. The symptom may be physical or behavioral (the way your child looked or what your child did) or emotional. (This question was repeated for the last week of life.)
2. During the last week of your child's life, what behaviors or statements from any health care professionals did or did not help you or that others, ie, laypersons or friends did that helped, or that did not help?
Parent queries at the conclusion of the interview
    1. How well did these questions allow you to tell me what was most important about the symptoms your child had that last week?
    2. Did any of these questions cause you distress?
    3. Would you like us to help you find more support for you and your family in your community?
Parent follow-up queries
    1. What was good about being in the study?
    2. What was bad about being in the study?
    3. What else would you like to tell us about the study questions?