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Table 4 Participants’ answers to questions about having CL/P by time period (n = 71) a

From: Disclosure of congenital cleft lip and palate to Japanese patients: reported patient experiences and relationship to self-esteem

 

Early elementary school (6–8 years)

Late elementary school (9–11 years)

Junior high school (12–15 years)

High school (16–18 years)

≥19 years

Never

n

%

n

%

n

%

n

%

n

%

n

%

Awareness and understanding of CL/P

            

 I was worried about the scars around my mouth and the shape of my nose.

35

(50.0)

43

(61.4)

47

(67.1)

50

(71.4)

46

(65.7)

1

(1.4)

 I was worried about my speech.

26

(36.6)

25

(35.2)

32

(45.1)

28

(39.4)

24

(33.8)

19

(26.8)

 I understood that the scars around my mouth and my speech were due to a medical condition.

22

(31.9)

33

(47.8)

43

(62.3)

43

(62.3)

50

(72.5)

2

(2.9)

 I understood the reason for the hospital visits and admissions.

13

(18.3)

20

(28.2)

35

(49.3)

37

(52.1)

42

(59.2)

7

(9.9)

Relationship with physician

            

  I actively asked my doctor questions.

0

(0.0)

2

(2.9)

2

(2.9)

11

(15.7)

23

(32.9)

23

(32.9)

  I think my doctor knows my feelings and hopes well.

6

(8.5)

5

(7.0)

7

(9.9)

16

(22.5)

17

(23.9)

29

(40.8)

Family conversations about CL/P

            

  It was natural to talk about my medical condition with my family.

11

(16.7)

17

(25.8)

17

(25.8)

18

(27.3)

23

(34.8)

24

(36.4)

Stigmatizing experiences

            

  Someone pointed out my face or speech.

46

(64.8)

52

(73.2)

45

(63.4)

27

(38.0)

23

(32.4)

2

(2.8)

 It was hard to have my face or speech pointed out.b

16

(34.8)

21

(40.4)

27

(60.0)

9

(33.3)

6

(26.1)

-

-

  Someone made fun of my face or speech.

33

(47.1)

44

(62.9)

30

(42.9)

8

(11.4)

6

(8.6)

17

(24.3)

  It was hard to be mocked about my face or speech.b

13

(39.4)

21

(47.7)

19

(63.3)

0

(0.0)

1

(16.7)

-

-

  Someone used abusive words or violence.

25

(35.2)

35

(49.3)

33

(46.5)

10

(14.1)

6

(8.5)

24

(33.8)

  It was hard to experience abusive words or violence.b

14

(56.0)

18

(51.4)

21

(63.6)

3

(30.0)

1

(16.7)

-

-

  1. Participants were asked to circle all periods when the answer was yes. The number of participants circling each item was calculated for each period.
  2. aThe number (n) differs for each question due to the omission of missing values.
  3. bPercentages were calculated based on the total population of people with stigmatizing experiences.
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BMC Research Notes

ISSN: 1756-0500

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