Table 3.
Stage 1: exchange of information.
| Coded behaviors | From neonatologist to parents | From parents to neonatologist | ||
|---|---|---|---|---|
| Cases (n = 12) N (%) | Illustrative quotes | Cases (n = 12) N (%) | Illustrative quotes | |
| 1. Asking for information about actual situation and treatment effects | 11 (92%) | “You are here every day, you kanguru with him. What is your impression? How has he been doing the past few days?” (#10) | 8 (67%) | “But his heart is still good right?” (#11) |
| 2. Providing information about actual situation and treatments effects | 12 (100%) | “The main problem is that the kidneys do not function, not a drop of urine has come. Two days ago, we hoped for recovery but until now we haven't seen any effect of the treatment.” (#4) | 11 (92%) | “It is hard to just sit there and wait: she does not move, she does not look at us.” (#5) |
| 3. Asking for information about prognosis | 0 (0%) | – | 5 (42%) | “What does that mean: ‘when things do not get better'? Does it mean we might have a disabled child?” (#1) |
| 4. Providing information on prognosis | 12 (100%) | “The perforation of the bowel will lead to an infection of the abdomen with peritonitis, by then your daughter will be severely affected.” (#2) | 4 (33%) | “She has a bleeding in her brain, not a small bleeding but a severe bleeding and there will probably be long term damage to her brain.” (#1) |
| 5. Asking for information about remaining options, including pros and cons | 0 (0%) | – | 5 (42%) | “How can you treat this intracranial bleeding? Is there something you can do?” (#3) |
| 6. Providing information about remaining options, including pros and cons | 8 (67%) | “There are two options: we can either continue the cooling therapy for 72 h and see how she is doing afterwards or we can redirect care because we think this life sustaining therapy is not leading anywhere.” (#8) | 2 (17%) | “I was wondering, can't we leave her in peace for a day? Just give her a rest and not performing any x-ray today?” (#3) |
| 7. Asking for a summary | 3 (25%) | “Let's start of by checking whether we are all on the same page, can you tell me what you've understood so far?” (#7) | 0 (0%) | —– |
| 8. Providing a summary | 1 (8%) | “Before we talk about the operation, let me summarize the current situation.” (#12) | 1 (8%) | “Okay, back to Max, I would really like to tell you what I understood so far.” (#5) |
| 9. Inviting to ask additional questions | 2 (17%) | “Is there something you did not understand, something that is not clear to you?” (#7) | 0 (0%) | —– |