Background
Methods
Design, setting, participants, and recruitment
Measures
Study procedures
Data analysis
Results
Characteristics | Cardiology | Neonatology | Neurology | Oncology | Total |
---|---|---|---|---|---|
n = 26 |
n = 81 |
n = 48 |
n = 45 |
N = 200 | |
(13 %) | (41 %) | (24 %) | (22 %) | (100 %) | |
Agea, M (SD)
| 40 (6.48) | ||||
Mothers, | |||||
n = 112 (56 %) | 38 (4.38) | 37 (4.29) | 41 (6.07) | 43 (7.30) | 39 (6.05) |
Fathers, | |||||
n = 88 (44 %) | 40 (6.88) | 39 (5.77) | 42 (6.56) | 48 (5.85) | 42 (6.83) |
Language, n ( %) | |||||
German | 21 (80.8) | 66 (81.5) | 44 (91.7) | 31 (68.9) | 162 (81.0) |
French | 5 (19.2) | 9 (11.1) | 3 (6.3) | 12 (26.7) | 29 (14.5) |
Italian | 0 (0.0) | 6 (7.4) | 1 (2.1) | 2 (4.4) | 9 (4.5) |
Marital status, n (%) |
n = 80 |
N = 199 | |||
Married/Partnership | 22 (84.6) | 79 (98.8) | 43 (89.6) | 41 (91.1) | 185 (93.0) |
Divorced/Separated | 4 (15.4) | 1 (1.3) | 4 (8.3) | 2 (4.4) | 11 (5.5) |
Single | 0 (0.0) | 0 (0.0) | 1 (2.1) | 2 (4.4) | 3 (1.5) |
Religious affiliation, n (%) |
n = 80 |
n = 44 |
N = 198 | ||
Catholic | 7 (26.9) | 37 (46.3) | 21 (43.8) | 14 (31.8) | 79 (39.9) |
Protestant | 7 (26.9) | 25 (31.3) | 17 (35.4) | 15 (34.1) | 64 (32.3) |
None | 8 (30.8) | 12 (15.0) | 3 (6.3) | 10 (22.7) | 33 (16.7) |
Other | 4 (15.4) | 6 (7.5) | 7 (14.6) | 5 (11.4) | 22 (11.1) |
Education, n (%) | |||||
School levelsb
| 0 (0.0) | 2 (2.5) | 1 (2.1) | 5 (11.1) | 8 (4.0) |
Post school educationc
| 11 (42.3) | 39 (48.1) | 19 (39.6) | 20 (44.4) | 89 (44.5) |
Tertiary leveld
| 10 (38.5) | 15 (30.9) | 22 (45.8) | 16 (35.6) | 73 (36.5) |
University degree | 5 (19.2) | 15 (18.5) | 6 (12.5) | 4 (8.9) | 30 (15.0) |
Employment status at death of the child | |||||
Working | 10 (38.5) | 41 (50.6) | 28 (58.3) | 16 (35.6) | 95 (47.5) |
Off worke
| 16 (61.5) | 40 (49.4) | 20 (41.7) | 29 (64.4) | 105 (52.5) |
Employment status at time of the survey | |||||
Working | 19 (73.1) | 65 (80.2) | 43 (89.6) | 39 (86.7) | 166 (83.0) |
Off worke
| 7 (26.9) | 16 (19.8) | 5 (10.4) | 6 (13.3) | 34 (17.0) |
Family incomef, n (%) |
n = 19 |
n = 66 |
n = 44 |
n = 40 |
N = 169 |
≤ CHF 100,000.- | 9 (47.4) | 33 (50.0) | 17 (38.6) | 24 (60.0) | 83 (49.1) |
> CHF 101,000.- | 10 (52.6) | 33 (50.0) | 27 (61.4) | 16 (40.0) | 86 (50.9) |
Deceased child was the only child, Yes (%) | 1 (3.8) | 13 (16.0) | 6 (12.5) | 4 (8.9) | 24 (12.0) |
Previous loss of a child, Yes (%) | 4 (15.4) | 6 (7.4) | 5 (10.4) | 2 (4.4) | 17 (8.5) |
Place of death |
n = 16 |
n = 51 |
n = 29 |
n = 28 |
N = 124 |
Intensive care unit | 10 (62.5) | 47 (92.1) | 13 (44.8) | 5 (17.8) | 75 (60.5) |
Hospital | 2 (12.5) | 0 (0.0) | 8 (27.6) | 11 (39.3) | 21 (16.9) |
Home | 3 (18.8) | 3 (5.9) | 6 (20.7) | 11 (39.3) | 23 (18.6) |
Somewhere else | 1 (6.2) | 1 (2.0) | 2 (6.9) | 1 (3.6) | 5 (4.0) |
Deceased child’s age | |||||
in days, Mdn (range) | 5 (1–26) | Na | |||
in years, Mdn (range) | 0.5 (0.1–9.1) | 4.8 (0.1–17.2) | 8.0 (1.7–17.4) | 3.3 (0.1–17.4) |
Parental experiences and perceived satisfaction with care
Support of the family unit
Communication in general and with physicians
Cardiology | Neonatology | Neurology | Oncology | Total | |
---|---|---|---|---|---|
M (SD) |
M (SD) |
M (SD) |
M (SD) |
M (SD) | |
Mdn (range) |
Mdn (range) |
Mdn (range) |
Mdn (range) |
Mdn (range) | |
In generalb
| |||||
Clarity | 5.88 (0.82) | 6.00 (1.23) | 5.83 (1.33) | 6.23 (1.10) | 5.99 (1.18) |
6 (4–7) | 6 (1–7) | 6 (2–7) | 6 (1–7) | 6 (1–7) | |
Honesty | 6.19 (1.10) | 6.31 (1.20) | 6.17 (1.26) | 6.53 (0.84) | 6.31 (1.13) |
7 (4–7) | 7 (1–7) | 7 (2–7) | 7 (3–7) | 7 (1–7) | |
Treatment options to alleviate suffering | |||||
Clarityc
| 6.08 (1.02) | 5.96 (1.29) | 5.79 (1.03) | 6.31 (0.85) | 6.02 (1.11) |
6 (4–7) | 6 (1–7) | 6 (3–7) | 7 (4–7) | 6 (1–7) | |
Prospects of life-sustaining measures | |||||
Clarity | 6.14 (0.96) | 6.11 (1.15) | 6.37 (0.95) | 6.53 (0.72) | 6.27 (1.00) |
6 (4–7) | 6 (2–7) | 7 (2–7) | 7 (4–7) | 7 (2–7) | |
Honesty | 6.14 (1.35) | 6.32 (1.09) | 6.36 (1.23) | 6.68 (0.62) | 6.39 (1.09) |
7 (2–7) | 7 (2–7) | 7 (1–7) | 7 (5–7) | 7 (1–7) |
Shared decision making
Relief of pain and other symptoms
Continuity and coordination of care
Bereavement support
Positive and negative experiences and quality of life
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)
|