Table 3.
Positive and negative experiences
| Number of quotesa | Sample quote | |
|---|---|---|
| Positive experiences | 180 | |
| Support of the family unit | 174 | Our individual needs were always supported. (18:6) b |
| Communication | 54 | Honesty when informing about our child’s situation. (22:2) |
| Shared decision making | 8 | Ethics council helped to take the right decision. (35:4) |
| Relief of pain and other symptoms | 8 | Oxygen support at home, mail order of medication. (101:2) |
| Continuity and coordination of care | 46 | Reachability day and night (hospital and community care). (17:1) |
| Bereavement support | 39 | That a lot of time was provided (by the hospital) to be with my son after his death. (3:1) |
| Negative experiences | 165 | |
| Support of the family unit | 110 | I felt left alone (75:3) |
| Communication | 73 | Not having enough information about my child’s situation (61:3) |
| Shared decision making | 14 | The night doctors did not support and follow our decision to end treatments. (5:7) |
| Relief of pain and other symptoms | 27 | Pain and shortness of breath. There was a phase when effective medication lagged behind the symptoms. (33:10) |
| Continuity and coordination of care | 53 | When the physicians and nurses always change. (116:2) |
| Bereavement support | 51 | No follow up care for us after her death. I needed to find my own psychologist/support group. (97:7) |
aEach listing of a positive or negative experience (quote) was potentially coded to more than one domain. bNumbers in parenthesis represent the quote’s identification number