Table 4.
Items Included in the PICU-QODD-20 by Domain
| Pain and Symptom Management |
| 1a. the child was free of pain |
| 1b. the child was free of other troubling symptoms |
| 1c. clinical staff responded quickly to parents’ concerns about their child’s symptoms |
| Communication Issues |
| 1e. clinical staff gave parents information about their child in a way that they could understand |
| 3d. clinical staff prepared parents for what might happen to their child |
| 1m. clinical staff discovered and respected parents’ wishes and decisions |
| 1g. clinical staff created an atmosphere in which parents felt comfortable asking questions about their child |
| Decisions to Withdraw Life Support |
| 1p. clinical staff offered parents opportunities to discuss options about their child’s care with the healthcare team |
| 1r. there were no conflicts between parents and the clinical staff about the best way to care for the child |
| Privacy and PICU Environment Issues |
| 5a. clinical staff provided parents with privacy with their child near the end of their child’s life |
| Physical and Instrumental Needs of Family |
| 1v. parents could easily meet their basic physical needs (accessible bathroom, showers, affordable meals, places to stay, parking, etc.) |
| Emotional Needs/Support of Family |
| 1j. clinical staff demonstrated that they cared about the child as an individual |
| 1k. clinical staff supported the parents emotionally |
| 1w. clinical staff provided parents with opportunities to be near their child |
| Fulfilling the Parental Role |
| 3b. clinical staff helped parents find ways to touch, hold, and/or connect with their child |
| Spirituality and Religious/Cultural Issues |
| 1y. hospital clergy and chaplains were available |
| 1z. staff discovered and respected the family’s spiritual and/or religious needs |
| Continuity/Coordination of Care |
| 2b. nurses and doctors did a good job of passing information about the child onto the next shift or rotation |
| Grief and Bereavement |
| 5d. clinical staff helped parents create memories (such as handprints, lockets of hair, photographs) of their child |
| 5g. once the child died, his/her parents were allowed to stay with him/her for as long as they wanted |