| |
Participants (n = 114 families)
|
|---|
|
Characteristics
|
M
|
SD
|
|---|
|
Patient’s age (years)
|
4.2
|
3.33
|
|
Mother’s age (years)
|
37.4
|
5.98
|
|
Father’s age (years)
|
40.3
|
6.15
|
|
Number of surgeries due to disease
|
4.4
|
4.21
|
|
Time since first surgery (years)
|
2.6
|
2.51
|
|
Time since initial diagnosis (years)
|
3.8
|
3.04
|
|
Parents
|
n
|
%
|
|---|
|
Gender
|
109/101
|
95.6/88.6
|
|
Marital status (mothers/fathers)
| | |
|
Married/living together
|
98/92
|
89.9/91.1
|
|
Single
|
9/7
|
8.3/6.9
|
|
Divorced
|
2/2
|
1.8/2.0
|
|
Not stated
|
0.0/0.0
|
0.0/0.0
|
|
Education (mothers/fathers)
| | |
|
Lower-middle education
|
32/42
|
29.4/41.6
|
|
Higher education
|
69/54
|
63.3/53.5
|
|
Not stated
|
8/5
|
7.3/5.0
|
|
Employment1 (mothers/ fathers)
| | |
|
Fully employed
|
11/94
|
10.1/93.1
|
|
Partly employed
|
54/4
|
49.5/4.0
|
|
No employment
|
42/3
|
38.5/3.0
|
|
Not stated
|
2/0
|
1.8/0
|
|
Social support2 (mothers/ fathers)
| | |
|
Poor
|
23/13
|
21.1/12.9
|
|
Moderate
|
49/61
|
45.0/60.4
|
|
Strong
|
37/27
|
33.9/26.7
|
|
Patients
|
n
|
%
|
|---|
|
Patient's gender
| | |
|
Female
|
44
|
38.6
|
|
Male
|
70
|
61.4
|
|
Patient receives level of care3
| | |
|
Yes
|
43
|
37.7
|
|
No
|
71
|
62.3
|
|
Patient rare disease
| | |
|
Anorectal malformation
|
30
|
26.3
|
|
Biliary atresia
|
14
|
12.3
|
|
Congenital diaphragmatic hernia
|
14
|
12.3
|
|
Esophageal Atresia
|
27
|
23.7
|
|
Hirschsprung’s disease
|
29
|
25.4
|
- 1Refers to the last 12 months. 2Social support is measured with the Oslo-Social Support Scale [23] and operationalized into three broad categories referring to [31]. 3Referes to the decision for the classification in the care insurance according to the German long-term care insurance
