Table 1 Sociodemographic and disease characteristics of the respondent

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

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

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