Huang Yan, Gui Li
Faculty of Nursing, Naval Medical University, Shanghai, China.
Front Public Health. 2025 Aug 7;13:1645798. doi: 10.3389/fpubh.2025.1645798. eCollection 2025.
Hemifacial Microsomia (HFM), the second most common congenital facial deformity, significantly impacts patients' physical appearance and psychosocial well-being, imposing considerable caregiving burdens on families. This study investigates the clinical characteristics of HFM patients, caregiver burdens, and unmet medical needs within Chinese online support communities.
A cross-sectional study was conducted using convenience sampling of members from an HFM caregiver support group on WeChat APP. Data were collected via electronic questionnaires from March to April 2025, with 141 valid responses. The questionnaire assessed caregiver demographics, the child's disease characteristics, prenatal history, and surgical experiences. For data analysis, we employed a multifaceted approach, utilizing descriptive statistics to summarize key variables, correlation analysis to explore relationships between factors, and thematic analysis to interpret responses to open-ended questions.
The study included 141 caregivers, mostly females (77.3%) aged 31-50 years (88.65%). Key findings revealed a higher prevalence of HFM in female patients (53.19%) and common comorbidities such as facial cleft (81.6%) and micrognathia (52.5%). Caregivers reported significant financial strain, with monthly household income and educational levels positively correlated with financial burden ( < 0.05). Rural residents and unemployed caregivers experienced heavier burdens ( < 0.05). Among 95 children with postoperative data, 21.88% expressed dissatisfaction with surgical outcomes, primarily due to unsatisfactory appearance. Additionally, 67.35% of families faced moderate-to-severe care burdens, with 85.11% of caregivers reported heightened sensitivity to social reactions toward their child's condition.
HFM patients and their families face substantial medical, financial, and psychosocial burdens, including barriers to accessing care, meeting special needs, and receiving health education. Interventions addressing both clinical and emotional support are critical to improving their quality of life. Future research should employ diverse sampling methods and longitudinal studies to enhance the validity of findings on HFM caregiving experiences.
半侧颜面短小畸形（HFM）是第二常见的先天性面部畸形，严重影响患者的外貌和心理社会福祉，给家庭带来相当大的照料负担。本研究调查了中国在线支持社区中HFM患者的临床特征、照料者负担和未满足的医疗需求。
采用便利抽样法，对微信应用上一个HFM照料者支持小组的成员进行横断面研究。2025年3月至4月通过电子问卷收集数据，共获得141份有效回复。问卷评估了照料者的人口统计学特征、孩子的疾病特征、产前病史和手术经历。在数据分析中，我们采用了多方面的方法，利用描述性统计来总结关键变量，相关性分析来探索因素之间的关系，以及主题分析来解释对开放式问题答案。
该研究纳入了141名照料者，大多数为女性（77.3%），年龄在31 - 50岁之间（88.65%）。主要研究结果显示，女性患者中HFM的患病率较高（53.19%），常见合并症如唇腭裂（81.6%）和小颌畸形（52.5%）。照料者报告了显著的经济压力，家庭月收入和教育水平与经济负担呈正相关（<0.05）。农村居民和无业照料者负担更重（<0.05）。在有术后数据的95名儿童中，21.88%对手术结果表示不满，主要原因是外观不满意。此外，67.35%的家庭面临中度至重度照料负担，85.11%的照料者报告对社会对其孩子病情的反应更加敏感。
HFM患者及其家庭面临巨大的医疗、经济和心理社会负担，包括获得护理、满足特殊需求和接受健康教育方面的障碍。提供临床和情感支持的干预措施对于改善他们的生活质量至关重要。未来的研究应采用多样化的抽样方法和纵向研究，以提高关于HFM照料经历研究结果的有效性。
