Zhang Yanan, Zhang Xinwen, Jiang Jinzhuo, Xie Wanhua, Xiang Daoman
Ophthalmology and otorhinolaryngology Department, Guangzhou Women and Children's Medical Center, Guangzhou Medical University, Guangdong Provincial Clinical Research Center for Child Health, Guangzhou, China.
College of Engineering, South China Agricultural University, Guangzhou, China.
JMIR Form Res. 2024 Mar 4;8:e53353. doi: 10.2196/53353.
Parents of children with cleft lip with or without cleft palate (CL/P) often face stigmatization, which has a significant impact on their quality of life and mental health. However, to date, there is a lack of comprehensive, multicenter empirical research on parents of children with CL/P in China, particularly those with large-scale samples.
This study aimed to identify major factors that contribute to the perception of stigma experienced by parents of children with CL/P.
A cross-sectional survey was conducted. A total of 104 parents of children diagnosed with CL/P in 2 hospitals were selected by convenience sampling. Demographics and disease information, the Chinese Perception of Stigma Questionnaire, the Center for Epidemiological Studies Depression Scale, and the Social Anxiety Scale were used in this study. Descriptive statistics, t tests, and one-way ANOVA were used to compare the differences between participants' demographic information and perception of stigma. Multivariable linear regression was performed to assess associations between demographic factors, social anxiety, depression, and perception of stigma.
The mean scores for the dimensions of perception of stigma, depression, and social anxiety were 22.97 (SD 9.21), 38.34 (SD 8.25), and 22.86 (SD 6.69), respectively. Depression and social anxiety were positively associated with discrimination, while surgery status was a negatively associated variable. Parents with a college education or higher had significantly lower levels of perceived stigma compared to parents with a junior high school education (all P values <.05). These 4 factors explained 40.4% of the total model variance (F=9.726; P<.001; R=0.450; adjusted R=0.404).
Our findings highlight a concerning trend of diminished quality of life among parents of children with CL/P. Factors such as parents' education level, surgery status, depression, and social anxiety are shown to influence the level of stigma experienced. Implementing comprehensive nursing care and providing presurgical support are effective strategies for alleviating parents' social anxiety, reducing perceived stigma, and preventing depression.
唇腭裂（CL/P）患儿的父母常常面临污名化，这对他们的生活质量和心理健康产生重大影响。然而，迄今为止，中国缺乏关于CL/P患儿父母的全面、多中心实证研究，尤其是大样本研究。
本研究旨在确定导致CL/P患儿父母产生污名感的主要因素。
进行了一项横断面调查。通过便利抽样，选取了两家医院共104名被诊断为CL/P患儿的父母。本研究使用了人口统计学和疾病信息、中文污名感知问卷、流行病学研究中心抑郁量表和社交焦虑量表。采用描述性统计、t检验和单因素方差分析来比较参与者的人口统计学信息与污名感知之间的差异。进行多变量线性回归以评估人口统计学因素、社交焦虑、抑郁与污名感知之间的关联。
污名感知、抑郁和社交焦虑维度的平均得分分别为22.97（标准差9.21）、38.34（标准差8.25）和22.86（标准差6.69）。抑郁和社交焦虑与歧视呈正相关，而手术状态是负相关变量。与初中文化程度的父母相比，大学及以上文化程度的父母的污名感知水平显著较低（所有P值<.05）。这4个因素解释了总模型方差的40.4%（F = 9.726；P <.001；R = 0.450；调整后R = 0.404）。
我们的研究结果凸显了CL/P患儿父母生活质量下降这一令人担忧的趋势。父母的教育水平、手术状态、抑郁和社交焦虑等因素被证明会影响所经历的污名程度。实施全面的护理和提供术前支持是减轻父母社交焦虑、减少污名感知和预防抑郁的有效策略。
