Table 5.
Specific information that contemporaneous long-term ventilation decision makers wished to know
| Modality | Desired Information | Number Who Mentioned (Total of 28) |
|---|---|---|
| Nonspecific | What is home/family life like with a child who uses LTV? | 14 |
| Diagnosis or prognosis of other complex chronic condition | 6 | |
| How will LTV help my child? | 6 | |
| Can my child leave the home while using LTV? | 5 | |
| What are the downsides of LTV? | 5 | |
| What will happen to my child if LTV is not initiated? | 4 | |
| What if my child gets better? | 3 | |
| Home nursing (e.g., how it works, pros/cons) | 3 | |
| What other additional equipment/treatments will my child need? | 2 | |
| How to care for other children in the home while caring for a child using LTV | 2 | |
| How does having a child who uses LTV affect the siblings? | 2 | |
| How to prepare for the death of one’s child | 2 | |
| Invasive | What are the risks of a tracheostomy? | 7 |
| How will a tracheostomy affect my child’s quality of life? | 6 | |
| How does a tracheostomy affect speech and oral intake? | 4 | |
| Is a tracheostomy permanent? | 4 | |
| Is a tracheostomy uncomfortable? | 3 | |
| Noninvasive | Will my child ever tolerate it, or how long will it take for my child to tolerate it (because child was not tolerating it well in the hospital)? | 3 |
| What if noninvasive LTV is not enough support? | 2 | |
| If my child gets intubated, does this mean he or she has to have a tracheostomy? | 2 |
Definition of abbreviation: LTV = long-term ventilation.