Table 2 Experiences with their child’s EOL care from interview parents (N = 30)
Quality domain | Total | Cardiology | Neonatology | Neurology | Oncology | Explanatory quote of a negative experiencea |
|---|---|---|---|---|---|---|
(Number of items) | M (SD) | M (SD) | M (SD) | M (SD) | M (SD) | |
Mdn, (range) | Mdn (range) | Mdn (range) | Mdn (range) | Mdn (range) | ||
Support of the family unit (4) | 4.98 (1.13) | 4.92 (1.46) | 5.16 (1.19) | 4.88 (0.75) | 4.75 (1.34) | “I was all alone (on the obstetrics ward). The staff just brought the meals and did not say much. I don’t know, it was as if I was leprous.” (Mother, Neonatology, G6b) |
5.25 (1.25 – 6.00) | 5.5 (3.25 – 6.00) | 5.25 (1.25 – 6.00) | 5.00 (3.50 – 5.50) | 5.25 (2.75 – 6.00) | ||
Communication (6) | 4.33 (1.41) | 4.33 (0.60) | 4.83 (1.12) | 3.5 (1.37) | 3.97 (2.06) | “I stayed at the hospital 12 h every day, at my child’s side, and just when I briefly left for a smoke, this physician disregarded my wishes again and spoke to my child about stopping the treatment.” (Father, Oncology, F7 b) |
5.00 (1.17 – 6.00) | 4.12 (3.83 – 5.00) | 5.12 (1.83 – 6.00) | 3.00 (2.33 – 5.33) | 5.08 (1.17 – 5.50) | ||
Shared decision-making (3) | 4.62 (1.53) | 3.78 (3.29) | 4.23 (1.55) | 5.33 (0.36) | 5.09 (0.99) | “We spent days waiting without hearing anything from the physicians, without receiving a decision saying which direction it would go. Not a sign that they even knew what to do. So, we thought in that case we’ll have to decide ourselves.” (Mother, Cardiology, G2 b) |
5.00 (0.00 – 6.00) | 5.33 (0.00 – 6.00) | 4.67 (0.33 – 6.00) | 5.33 (5.00 – 6.00) | 5.33 (3.00 – 6.00) | ||
Relief of pain and other symptoms (3) | 4.90 (1.17) | 4.67 (1.53) | 4.95 (1.19) | 4.28 (1.42) | 5.43 (0.57) | “Our child was screaming in pain. For us (parents) they did not give her/him enough pain killers. Our child cried and cried. They did not assess her/him properly when we arrived (in the hospital), they did not realise the gravity of the situation.” (Mother, Neurology, F2 b) |
5.00 (1.67 – 6.00) | 5.00 (3.00 – 6.00) | 5.33 (3.00 – 6.00) | 4.83 (1.67 – 5.33) | 5.33 (4.67 – 6.00) | ||
Continuity and coordination of care (4) | 4.42 (1.37) | 3.94 (2.39) | 4.41 (1.53) | 3.94 (0.26) | 4.97 (0.83) | “You see, we already had the physiotherapist and ergotherapist as reference persons. When we arrived at the hospital there were all these new people and they knew absolutely nothing about our child and the situation.” (Mother, Neurology, F2 b) |
4.50 (1.13 – 6.00) | 3.94 (2.25 – 5.63) | 4.50 (1.13 – 6.00) | 3.94 (3.75 – 4.13) | 5.25 (3.75 – 5.63) | ||
Bereavement support (4) | 53 (1.29) | 3.94 (1.33) | 5.62 (0.63) | 5.12 (0.78) | 4.69 (2.6) | “We were told we should be glad that our child was able to die as it would have been much more difficult if she/he had collapsed on the way to school with a friend. … You cannot say that death is a good outcome!” (Mother, Cardiology, G2 b) |
6.00 (0.75 – 6.00) | 3.94 (3.00 – 4.88) | 6.00 (4.13 – 6.00) | 4.87 (4.50 – 6.00) | 6.00 (0.75 – 6.00) |