视网膜母细胞瘤患儿父母病耻感现状及影响因素分析  

Analysis of the current status of stigma and factors affecting parents of children with retinoblastoma

作　　者：许玮[1,2] 顾湘 卢梦琪 曾长娟 文旭洋 顾芬 Xu Wei;Gu Xiang;Lu Mengqi;Zeng Changjuan;Wen Xuyang;Gu Fen(Ophthalmology,Ninth Peoples Hospital,Shanghai Jiao Tong University School of Medicine,200111 China;School of Nursing,Shanghai Jiao Tong University School of Medicine,200112 China;Huadong Hospital Of Fudan University,Shanghai,200403 China)

机构地区：[1]上海交通大学医学院附属第九人民医院眼科,200111 [2]上海交通大学医学院护理学院,200112 [3]复旦大学附属华东医院,200403

出　　处：《临床眼科杂志》2025年第1期59-63,共5页Journal of Clinical Ophthalmology

基　　金：交通大学医学院附属第九人民医院“优秀护理人才计划”领英计划(JYHRC22-LO1);国家自然科学基金面上项目(82272642);上海市眼部疾病研究中心(2022ZZ01003)。

摘　　要：目的了解视网膜母细胞瘤(RB)患儿父母的连带病耻感现状及其影响因素。方法选取2018年1月至2022年11月我院135例视网膜母细胞瘤患儿的父亲或母亲,采用一般资料调查表、社会影响量表、社会支持评定量表、一般自我效能感量表、简易应对方式量表对其进行调查。结果视网膜母细胞瘤患儿照顾者病耻感量表总分为55.00(49.00,63.00)分,社会支持总分为31.00(23.00,37.50)分,一般自我效能感总分为21.00(16.50,26.00)分,积极应对评分(26.44±8.599)分,消极应对评分为(12.54±5.406)分。多因素分析结果显示社会支持总分、疾病分期、应对倾向、医保类型为RB父母病耻感的影响因素,合计解释总变异的37.2%。结论RB患儿父母病耻感处于较高水平,有待进一步改善。临床护理人员应关注RB患儿的疾病分期、医保类型、应对倾向,正确引导,提高社会支持利用度,降低患儿父母的病耻感水平,全面配合患儿更好的治疗。Objective To understand the current status of stigma among parents of children with retinoblastoma(RB)and its influencing factors.Methods The fathers or mothers of 135 children with retinoblastoma in our hospital from January 2018 to November 2022 were selected,surveyed using the General Information Questionnaire,Social Influence Scale,Social Support Rating Scale,General Self-Efficacy Scale,and Simple Coping Styles Scale.Results The total score of the Caregiver Stigma Scale for children with RB was 55.00(49.00,63.00),the total score of the Social Support Scale was 31.00(23.00,37.50),the total score of the General Self-Efficacy Scale was 21.00(16.50,26.00),and the Positive Coping Score was(26.44±8.599),and the Negative Coping Score was(12.54±5.406)points.The results of multifactorial analysis showed that total social support score,disease stage,coping tendency,and type of health insurance were the in-fluencing factors of parental stigma in RB,which together explained 37.2%of the total variance.Conclusions Parental stigma in children with RB is at a high level and needs to be further improved.Clinical caregivers should pay attention to the disease stage,type of medical insurance,and coping tendency of children with RB,correctly guide and improve the use of social support,reduce the level of the sense of shame of the parents of children with RB,and comprehensively coop-erate with the better treatment of children with RB.

关 键 词：视网膜母细胞瘤 病耻感 影响因素 内在羞耻 干预措施 

分 类 号：R47[医药卫生—护理学]