注意缺陷多动障碍患儿父母照护体验的质性研究  

Parental experience in caring for children with attention deficit hyperactivity disorder:a qualitative study

作　　者：孙巧枝[1] 陈长英[2] 李红[3] 张洁[4] 王俊霞[5] 王盼盼[6] 徐海莉[7] SUN Qiaozhi;CHEN Changying;LI Hong;ZHANG Jie;WANG Junxia;WANG Panpan;XU Haili(Department of Pediatrics,the First Affiliated Hospital of Zhengzhou University,Zhengzhou,Henan 450052,China;不详)

机构地区：[1]郑州大学第一附属医院儿科门诊,河南郑州450052 [2]郑州大学第一附属医院学术交流培训中心 [3]郑州大学第一附属医院麻醉科 [4]郑州大学第一附属医院高压氧治疗中心 [5]郑州大学第一附属医院门诊部 [6]郑州大学护理与健康学院社区护理教研室,河南郑州450001 [7]郑州大学第一附属医院护理部

出　　处：《中华全科医学》2024年第6期995-999,共5页Chinese Journal of General Practice

基　　金：2021年河南省科技攻关项目(212102310767);2023年河南省科技攻关项目(232102310342)。

摘　　要：目的从注意缺陷多动障碍患儿父母的视角进行访谈,通过探究父母在对这类患儿健康照护过程中的真实体验,为注意缺陷多动障碍患儿多维度、全方位干预方案的构建提供依据。方法运用质性研究中的现象学研究方法,采用目的抽样法,选取2022年4—8月在郑州大学第一附属医院儿科门诊就诊的20名注意缺陷多动障碍患儿的父亲或母亲进行半结构式访谈,样本量以资料饱和为准。基于文献回顾、课题组讨论、预访谈,拟订访谈提纲。对访谈过程录音,运用Nvivo12软件整理访谈资料,并采用Colaizzi 7步分析法对资料进行分析、提炼主题。结果注意缺陷多动障碍患儿父母照护体验可以归纳为5个主题:(1)症状管理困难(多种症状并存,管理难度大;父母缺乏症状管理技巧)。(2)照顾负担重(主观负担;客观负担)。(3)心理压力大(焦虑、抑郁;疾病不确定感;对孩子成长的担忧)。(4)错误认知(注意缺陷多动障碍会自愈;错误归因)。(5)多元需求(医务人员的专业指导;对家庭、学校及社会支持的渴望)。结论注意缺陷多动障碍患儿父母在照护期间存在多方面的问题和需求,医护人员应开展针对性的专业指导,重视其身心感受,给予情感支持,构建“医-家-校”三方联动的注意缺陷多动障碍患儿支持体系,以适应注意缺陷多动障碍患儿防治的需求。Objective This paper aims to interview parents of children with attention deficit hyperactivity disorder(ADHD)to explore their firsthand experiences in providing healthcare for their children.The findings will provide a basis for developing a multi-dimensional and comprehensive intervention program for families coping with ADHD.Methods A phenomenological study was conducted from April to August 2022 in the pediatric wards of the First Affiliated Hospital of Zhengzhou University.Purposive sampling was adopted,and individual semi-structured interviews were conducted among 20 parents of children with ADHD.The interviews were conducted until data saturation was achieved.The interview guideline was formulated based on a literature review,group discussion,and pre-interview.The interviews were audio-recorded,and the data were transcribed and managed using Nvivo12 software.Finally,the data were analyzed using Colaizzi's 7-step analysis method.Results Five themes were emerged from the data analysis:(1)Difficulty in symptom management including multiple coexisting symptoms,highlighting the significant difficulty parents face in symptom management due to their lack of symptom management skills.(2)Heavy caregiving burden including subjective and objective burdens.(3)High psychological pressure including elevated levels of anxiety and depression experienced by parents,as well as the sense of uncertainty in illness and concern about the child's growth and development.(4)Misperceptions including the belief that ADHD will resolve on its own and misattribution.(5)Multiple needs including professional guidance from medical staff and the desire for support from family,school,and social network.Conclusion The parents of ADHD children faced many challenges and have many needs.Medical staff should provide targeted professional guidance,pay attention to their physical and mental feelings,and offer emotional support.The support system with the interaction between hospitals,families,and schools for children with ADHD should be developed,

关 键 词：注意缺陷多动障碍 照护体验 父母 照顾者 质性研究 

分 类 号：R729[医药卫生—儿科]