摘要
目的探索先天性因素所致的脊髓栓系综合征患儿父母连带病耻感的体验与来源及其应对方式,以期为制定针对性干预措施提供依据。方法采用现象学研究方法,目的抽样法选取2018年2月-2019年12月安徽省某三甲儿童专科医院神经外科18例诊断为脊髓脊膜膨出、脊柱裂、皮毛窦伴脊髓栓系综合征的患儿父母,进行半结构式访谈,现场录音,根据colaizzi 7步分析法对资料进行整理分析。结果先天性因素所致的脊髓栓系综合征患儿父母连带病耻感体验归结为自卑与抱怨、歉疚与自责、焦虑与担忧3个主题;来源归纳为:疾病知识缺乏、家庭经济不力、消极社会支持和被歧视与冷遇4个主题;应对方式归结:被动等待、孤立回避、积极面对3个主题。结论先天性因素所致脊髓栓系综合征患儿父母连带病耻感体验复杂,来源有社会因素、家庭因素、个人因素,其主动应对患儿疾病照护能力不足,医护人员应根据其不同的心理体验及来源与应对方式,给予针对性的干预措施,提供疾病知识宣教、科普宣传、照护技能指导和特殊疾病资助政策等,提高父母对疾病的认识,降低其连带病耻感,提升其积极应对能力,直面问题,解决问题,配合治疗。
Objective The aim of this study was to explore the experience,origin and coping style of the associated stig-ma in parents of children with tethered cord syndrome caused by congenital factors,and provide basis for formulating tar-geted intervention measures.Methods We used the phenomenological research methods,the purpose sampling method to select parents of children with tethered cord syndrome,from February 2018 to December 2019,from the neurosurgery department of Anhui Children's Hospital in Anhui province,18 patients were diagnosed with meningomyelocele bulging,bifida spine,fur sinus combined the semi-structured interviews was conducted.The Colaizzi's method was used to analyze the field recording.Results The experience of the associated stigma in parents of children with tethered cord syndrome caused by congenital factors was summarized as three themes:inferiority and complaint,guilt and remorse,anxiety and worry.The sources are summarized as follows:lack of disease knowledge,Poor family finances,negative social support,discrimination and indifference.Coping styles are summarized as follows:passively waiting,isolated avoidance and face positively.Conclusion Associated stigma experience of in parents of children with tethered cord syndrome is complex,which comes from social factors,family factors,personal factors,their active ability to cope with the care of disease in children with associated stigma.The medical staff should provide targeted intervention measures based on their different psychological experiences,sources and coping styles,provide disease knowledge education,science popularization,care skills guidance,and special disease subsidy policies,etc.,to increase parents'awareness of diseases and reduce their ties.Stigma,improve their active coping ability,face problems,solve problems,and cooperate with treatment.
作者
陈月香
刘安诺
朱桂月
刘巾禹
CHEN Yue-xiang;LIU An-nuo;ZHU Gui-yue;LIU Jin-yu(Department of Neurosurgery,Anhui Children's Hospital,Hefei,Anhui 230001,China)
出处
《中华全科医学》
2021年第5期825-829,共5页
Chinese Journal of General Practice
基金
安徽省自然科学基金项目(1808085MH277)。
关键词
脊髓栓系综合征
父母
儿童
连带病耻感
质性研究
Tethered cord syndrome
Parents
Children
Associated stigma
Qualitative research
