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唇腭裂手术患儿母亲的耻辱感认知与照顾者负担之间的关联及心理韧性的中介作用

Association between perception of stigma and caregiver burden among mothers of children with cleft lip and palate surgeries and the mediating role of psychological resilience.

作者信息

Yang Jun, Wang Dan, Tang Wanjie, Zhao Rui, Lyu Yaqi, Chi Ting, Huang Hanyao, Li Yang, Gong Caixia, Shi Bing

机构信息

State Key Laboratory of Oral Diseases & National Center for Stomatology & National Clinical Research Center for Oral Diseases, West China Hospital of Stomatology, Sichuan University, Chengdu, 610041, Sichuan, China.

West China School of Public Health and West China Fourth Hospital, Sichuan University, Chengdu, China.

出版信息

Sci Rep. 2025 Aug 11;15(1):29318. doi: 10.1038/s41598-025-14796-1.

DOI:10.1038/s41598-025-14796-1
PMID:40790152
Abstract

Cleft lip and palate (CLP) are common congenital conditions necessitating surgical intervention, often imposing significant emotional and social challenges on caregivers, particularly mothers. This study, conducted between August 2023 and May 2025, enrolled 146 mother-child dyads (each comprising a child scheduled for CLP surgery and their mother) to investigate caregiver burden, perceived stigma, psychological resilience, and social support through structured assessments and one-on-one interviews. Results revealed that elevated levels of perceived stigma were associated with increased caregiver burden. Contrary to expectations, higher stigma correlated with reduced psychological resilience, which subsequently mediated heightened caregiver stress even after controlling for clinical and demographic covariates. Notably, social support did not demonstrate a mitigating effect on stigma's impact, suggesting caregivers may experience persistent isolation despite accessible assistance. These findings underscore the critical need for targeted interventions addressing stigma and enhancing resilience to alleviate caregiver burden. The study highlights the importance of fostering supportive environments for families managing CLP, as mitigating stigma and strengthening resilience can substantially improve quality of life for both caregivers and children.

摘要

唇腭裂(CLP)是常见的先天性疾病,需要进行手术干预,这通常给照顾者,尤其是母亲带来重大的情感和社会挑战。这项在2023年8月至2025年5月期间进行的研究,招募了146对母婴(每对包括一名计划接受唇腭裂手术的儿童及其母亲),通过结构化评估和一对一访谈来调查照顾者负担、感知到的耻辱感、心理韧性和社会支持。结果显示,较高水平的感知耻辱感与照顾者负担增加有关。与预期相反,更高的耻辱感与心理韧性降低相关,即使在控制了临床和人口统计学协变量后,心理韧性降低随后也介导了照顾者压力的增加。值得注意的是,社会支持并未对耻辱感的影响起到缓解作用,这表明照顾者可能尽管能获得帮助,但仍会感到持续的孤立。这些发现强调了针对耻辱感并增强韧性以减轻照顾者负担的针对性干预措施的迫切需求。该研究强调了为管理唇腭裂的家庭营造支持性环境的重要性,因为减轻耻辱感和增强韧性可以显著提高照顾者和儿童的生活质量。

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本文引用的文献

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The Role of Dimensions of Social Support in the Relationship Between Stigma and Mental Health: A Moderation Analysis.社会支持维度在污名与心理健康关系中的作用:一项调节分析
AIDS Behav. 2025 Jan;29(1):155-165. doi: 10.1007/s10461-024-04506-9. Epub 2024 Sep 26.
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Affiliate stigma and caregiver burden in parents of children with epilepsy.癫痫患儿父母的附属污名与照料负担
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PLoS One. 2022 Oct 12;17(10):e0275364. doi: 10.1371/journal.pone.0275364. eCollection 2022.
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Psychological Resilience: An Affect-Regulation Framework.心理韧性:一种情感调节框架。
Annu Rev Psychol. 2023 Jan 18;74:547-576. doi: 10.1146/annurev-psych-020122-041854. Epub 2022 Sep 14.
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Psychol Res Behav Manag. 2021 Aug 7;14:1201-1209. doi: 10.2147/PRBM.S320126. eCollection 2021.
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The Burden and Perceived Stress on Family Caregivers of Patients With Orofacial Cleft Deformities in The Perioperative Period of Cleft Repair.唇腭裂修复围手术期口面部畸形患者家庭照顾者的负担及感知压力
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9
Social support buffers the impacts of Diabetes distress on health-related quality of life among type 2 diabetic patients.社会支持缓冲了糖尿病困扰对 2 型糖尿病患者健康相关生活质量的影响。
J Health Psychol. 2022 Sep;27(10):2305-2317. doi: 10.1177/1359105320980821. Epub 2021 Jan 6.
10
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