国际口腔医学杂志

国际口腔医学杂志 ›› 2026, Vol. 53 ›› Issue (1): 59-66.doi: 10.7518/gjkq.2026103

• 论著 • 上一篇    下一篇

唇腭裂患儿母亲病耻感现状及影响因素分析

赵芮1(),王丹2,吕雅琪3,崔珂3,池婷2,黄汉尧2,李杨2,石冰2,龚彩霞2()   

  1. 1.四川大学华西护理学院/四川大学华西口腔医院护理部 成都 610041
    2.口腔疾病防治全国重点实验室;国家口腔医学中心 口腔疾病国家临床医学研究中心;四川大学华西口腔医院唇腭裂外科 成都 610041
    3.四川大学公共管理学院社会学与心理学系 成都 610065
  • 收稿日期:2024-11-19 修回日期:2025-08-02 出版日期:2026-01-01 发布日期:2025-12-31
  • 通讯作者: 龚彩霞
  • 作者简介:赵芮，硕士，Email：hxkqzoe@163.com

Analysis of the status and influencing factors of stigma among mothers of children with cleft lip and palate

Rui Zhao1(),Dan Wang2,Yaqi Lü3,Ke Cui3,Ting Chi2,Hanyao Huang2,Yang Li2,Bing Shi2,Caixia Gong2()   

  1. 1.West China School of Nursing, Sichuan University/Dept. of Nursing, West China Hospital of Stomatology, Sichuan University, Chengdu 610041, China
    2.State Key Laboratory of Oral Diseases & National Center for Stomatology & Natio-nal Clinical Research Center for Oral Diseases & Dept. of Cleft Lip and Palate Surgery, West China Hospital of Stomatology, Sichuan University, Chengdu 610041, China
    3.Dept. of Sociology and Psychology, School of Public Administration, Sichuan University, Chengdu 610065, China
  • Received:2024-11-19 Revised:2025-08-02 Online:2026-01-01 Published:2025-12-31
  • Contact: Caixia Gong

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摘要：

目的 探讨唇腭裂患儿母亲病耻感现状及影响因素，为唇腭裂家庭进行心理支持提供新的视角与干预依据。 方法 选取127名承担主要照顾者责任的唇腭裂患儿母亲作为研究对象。应用社会影响量表、社会支持评定量表、心理韧性量表、照顾负担量表和自制人口学一般资料问卷进行调查，统计各量表得分并进行相关性分析。 结果 唇腭裂患儿母亲的病耻感水平与家庭月收入、患儿年龄<3岁与7~12岁2组间具有显著关系（P<0.05）；唇腭裂患儿母亲的病耻感与社会支持关系显著（P<0.05）但无线性关系；与心理韧性呈负相关（β=-0.241，P=0.002）；与照顾者负担得分呈正相关（β=0.428，P<0.001）；链式中介效应分析显示，照顾负担-心理韧性-社会支持在唇腭裂患儿母亲病耻感间起部分中介效应作用（P<0.05）。 结论 唇腭裂患儿母亲普遍存在病耻感。其病耻感与患儿年龄、经济因素、心理韧性、照顾负担、社会支持相关。医护人员应采取针对性的干预措施减少患儿母亲的病耻感，改善以患儿为主的整个家庭的长期生活质量。

关键词: 唇腭裂, 唇腭裂家庭, 病耻感, 链式中介

Abstract:

[Abstract] Objective　This study aimed to investigate the current status and influencing factors of stigma among mo-thers of children with cleft lip and palate (CLP), providing new perspectives and intervention evidence for psychological support for CLP families. Methods　A total of 127 mothers serving as primary caregivers for children with CLP were selected as the study subjects. Surveys were conducted using the social impact scale, social support rating scale, psychological resilience scale, caregiver burden scale, and a self-designed demographic questionnaire. Scores from each scale were statistically analyzed, and correlation analysis was performed. Results　The extent of stigma among mothers of children with CLP showed significant relationships with monthly household income and the child’s age (<3 years vs. 7-12 years; P<0.05). This stigma was significantly associated with social support (P<0.05), but the correlation was not li-near. It was negatively correlated with psychological resi-lience (β=-0.241, P=0.002) and positively correlated with caregi-ver burden (β=0.428, P<0.001). Chain mediating effect analysis revealed that caregiver burden-psychological resilience-social support partially mediated the stigma experienced by these mothers (P<0.05). Conclusion　Stigma is prevalent among mothers of children with CLP. The factors influencing this stigma include the child’s age, economic status, psychological resilience, caregiver burden, and social support. Healthcare professionals should implement targeted interventions to reduce maternal stigma and improve the long-term quality of life for these child-centered families.

Key words: cleft lip and palate, cleft lip and palate family, stigma, chain mediation

中图分类号: 

  • R782.2

表 1

不同特征的唇腭裂患儿母亲SIS得分比较"

测量项目n得分

t或

F值

P值
患儿情况

性别

男

女

61

66

46.03±12.91

50.18±12.27

-1.8570.066

年龄/岁

<3

3~6

7~12

13~17

74

16

22

15

49.34±12.48*

48.00±14.25

42.82±11.86

50.60±12.37

1.7230.166

诊断

唇裂

腭裂

唇裂＋腭裂

38

50

39

49.26±12.99

47.00±13.32

48.67±11.78

0.3790.686

手术次数

1

2

≥3

81

20

26

48.99±12.24

49.60±15.48

44.62±11.60

1.3190.271

医保

有

无

121

6

48.01±12.93

51.83±5.91

1.9980.160

是否为独生子女

是

否

62

65

49.95±13.05

46.51±12.23

1.5360.127
母亲情况

婚姻状况

已婚

未婚或离异或丧偶

121

6

48.05±12.91

51.00±7.64

1.885

0.581

年龄/岁

18~29

30~39

>40

35

80

12

47.94±13.77

48.50±12.35

46.83±12.79

0.0970.907

民族

汉族

少数民族

110

17

47.66±12.47

51.59±14.05

1.4100.237

家庭月收入/元

1 000以下

1 000~3 000

3 000~5 000

5 000~10 000

10 000~50 000

50 000以上

8

24

49

31

13

2

50.25±8.07

54.42±11.59

44.86±14.16

49.84±10.02

43.85±13.84

49.50±0.71

2.4110.040

文化程度

初中及以下

高中或中专

大专及以上

43

32

52

48.86±12.47

47.13±13.12

48.29±12.84

0.1720.842

表 2

唇腭裂患儿母亲的照顾负担、心理韧性及社会支持得分与病耻感的相关性分析 (n=127，x±s)"

项目得分/分病耻感照顾负担心理韧性社会支持
病耻感48.19±12.701---
照顾负担34.27±16.240.554***1--
心理韧性56.06±20.02-0.425***-0.381***1-
社会支持41.65±7.55-0.300**-0.353***0.218*1

表 3

唇腭裂患儿母亲的照顾负担、心理韧性、社会支持得分及家庭月收入与病耻感的线性回归分析 (n=127)"

项目B值标准误β值t值P值95%置信区间
常量52.0287.103—7.3250.00037.968~66.088
心理韧性-0.1530.049-0.241-3.0970.002-0.251~-0.550
照顾负担0.3350.0640.4285.2760.0000.209~0.461
社会支持-0.1620.129-0.096-1.2520.213-0.418~0.094
家庭月收入-1.5461.022-0.134-1.5130.133-3.570~0.477

图 1

唇腭裂患儿母亲心理韧性对病耻感的链式中介作用模型*P<0.05；**P<0.01；***P<0.001。"

表 4

唇腭裂患儿母亲心理韧性对病耻感的总间接效应、直接效应、中介效应分解表"

项目效应值标准误95%置信区间相对效应占比
下限上限
总间接效应-0.1170.034-0.190-0.05643.49%
心理韧性-社会支持-病耻感-0.0130.012-0.4070.0054.83%
心理韧性-照顾负担-病耻感-0.0870.030-0.149-0.03332.34%
心理韧性-社会支持-照顾负担-病耻感-0.0170.107-0.042-0.0016.32%
直接效应-0.1520.049-0.251-0.05556.51%
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