【作者】 李杨；

【导师】 魏珉； Gayle Page； Susan Immelt；

【作者基本信息】 中国协和医科大学 ， 护理学， 2008， 博士

【摘要】 研究背景:慢性病是儿童期常见病。对于很多慢性病患儿来说,疾病已经成为一种慢性的生命状况,慢性病状态将一直伴随他(她)们直至成年期,甚至一生。慢性病不仅影响患儿正常的身心发展,也影响着患儿父母及其整个家庭的正常生活。患儿及其父母需要应对由疾病所带来的很多问题,需要不断调整自己,以适应慢性病状态。在治疗疾病的同时,关注患儿及其父母的心理状态,了解他(她)们的应激源和应对方式,并提供教育干预等措施,对于帮助患儿及其家庭更好地应对慢性病的挑战是非常有帮助的。我们国家目前还没有关于慢性病患儿及其父母的应激源、患儿应对方式的研究报告,针对患儿及其父母的教育干预性研究也比较少。研究目的:1、了解慢性病患儿及父母的应激源、应对方式、心理状态及其影响因素2、评价针对慢性病患儿及其父母的教育干预措施的效果研究方法:1、第一部分为横断面研究,采用目的抽样方法,选取2007年2月～2008年2月在北京协和医院儿科门诊和病房就诊的慢性病患儿及其父母各280人,通过半结构访谈方式了解患儿及父母的应激源,采用不同的量表了解患儿及父母的应对方式和心理状态。2、第二部分为类实验性研究,选取2007年2月～2008年1月在北京协和医院儿科病房住院的系统性红斑狼疮、紫癜性肾炎患儿及其父母为样本。其中2007年2月～7月入选的患儿及其父母作为对照组,2007年8月～2008年1月入选的作为干预组。对照组接受病房常规治疗和护理;干预组除接受病房常规治疗和护理外,由研究者本人对患儿及其父母进行一对一的宣教和指导,内容包括疾病知识、自我护理知识、药物知识、应对技巧等。结果:1、第一部分:①患儿应激源主要包括5个方面:学习、疾病治疗和护理、日常生活、与同学/伙伴关系、与父母关系。患儿更多采用“接受”等积极的应对方式。39.6%的患儿自我意识水平偏低、54.6%的患儿存在焦虑障碍,33.6%存在抑郁障碍,26.8%的患儿同时存在焦虑和抑郁障碍。②患儿父母应激源主要包括6个方面:患儿病情及身体状况、患儿疾病治疗、经济方面、照顾患儿方面、角色功能及沟通交流。父母采用的积极应对方法比较局限,更多集中在为患儿寻求和维持更好的疾病治疗方面,而忽视了其自身的心理调节和寻求社会支持。5806%的父母存在焦虑障碍、56.8%存在抑郁障碍、49.6%的父母同时存在焦虑和抑郁障碍。③患儿及父母的应激源、应对方式、心理状态受到患儿人口统计学特征(如年龄、性别、居住地、是否为独生子女)、疾病特征(如诊断、病程、病情状况)和父母人口统计学特征(如年龄、文化程度、家庭月收入)的影响。④无论是患儿还是父母,其应激源越多压力程度越大,采用积极应对方式的频率越少,焦虑和抑郁程度越重;良好的心理状态与其积极的应对方式呈正相关。2、第二部分:教育干预后,①干预组患儿父母的知识问卷得分比对照组高(p=0.000)、应激源总数比对照组少(p=0.000);“通过咨询和交流,获取信息”这一类积极应对方式的使用频率比对照组高(p=0.021);②干预组患儿的知识问卷得分比对照组高(p=0.000),应激源总数比对照组少(p=0.035)。结论:1、慢性病患儿应激源较多、压力较大,虽然能够采取积极的应对方式,但心理问题仍较严重,应引起重视。特别是对那些居住在农村、患儿为非独生子女、高年龄组、因病休学、目前病情反复或加重、病程较长、住院次数较多、父母文化水平较低、家庭月收入较低的患儿,应给予更多的关注。2、患儿父母应激源较多、压力较大,对积极的应对方式的选择还比较局限,心理问题也较严重,应引起重视。特别是对那些患儿病情控制不好、休学,父母为农民、不在业、文化水平较低、家庭月收入较低的患儿父母,应给予更多的关注。3、教育干预可以增加慢性病患儿及父母的疾病知识,减少患儿及父母的应激源,使父母更多的采用积极的应对方式,但对改善患儿及父母的焦虑、抑郁状态无明显作用。更多还原

【Abstract】 Background:Chronic illness is a common occurrence in childhood;it can not only affect normal development of children,but also affect their families,especially their parents.Children with chronic illness and their families have to cope with the chronic conditions for a long time,even for child’s whole life.Understanding the stressors,coping strategies and psychosocial states in the chronically ill children and their parents,and providing educational interventions are very helpful for them to cope well with the chronic conditions.There is no evidence that stressors and coping strategies in chronically ill children and their parents have been explored in China.Purpose:(1).To explore the stressors,coping strategies,and psychosocial states in children with chronic illness and their parents.(2).To evaluate the effectiveness of an educational intervention in children with chronic illness and their parents.Methods:(1) The first study is a descriptive study.Purpose sampling was used to select 280 children with chronic illness and 280 parents from Peking Union Medical College Hospital pediatric outpatient and inpatient department between February 2007 and February 2008.The semi-structured interview was used to collect the data of stressors,and several scales were used to evaluate the coping strategies and psychosocial states in children with chronic illness and their parents. (2) The second study is a quasi-experimental design.Inpatients of PUMC Hospital pediatric ward,during February 2007～January 2008,including their parents(mother or father) were collected as the sample.Beside the usual care same as the control group, educational sessions were given to the experimental group,and the content of the sessions included knowledge of chronic disease,drugs,self-care,and coping skills.Results:(1) Part 1:①The stressors in chronically ill children mainly included five aspects:school performance,medication and treatment,daily life,peer relationships,and parent-child relationship.The "acceptance" coping strategies were more used by children.The prevalence of anxiety disorders of children was 54.6%,the prevalence of depression disorders was 33.6%,and 39.6%of the children had lower level of self-concept.②The stressors in parents mainly included six aspects:child’s health,medical treatment of children,financial problems,medical care of child,parental role function,and communication.The parents more used the coping strategies of "maintaining family integration,cooperation" and less used "maintaining social support,psychological stability".The prevalence of anxiety disorders of parents was 58.6%,the prevalence of depression disorders was 56.8%,and 49.6%of the parents had both anxiety and depression disorders.③The stressors,coping strategies,and psychosocial states in children and their parents were influenced by demographic information of children and their parents,and the characteristic of children’s diseases.④Both children and their parents,the more stressors they had,the less active coping strategies they used;active coping strategies were positively related to the well psychosocial states.(2) Part 2:After providing the educational interventions,comparing to the control group,①the knowledge level of parents of experimental group was higher,and the stressors were less than that of parents of control group,and parents of experimental group used more active coping strategies.②the knowledge level of children of experimental group was higher,and the stressors were less than that of the children of control group. Conclusions:(1) Children with chronic illness had many stressors and high level of stress,though they used active coping strategies,the prevalence of anxiety disorders and the prevalence of depression disorders among them were still high.The children,who were living in rural,absent from school,with serious disease condition,long duration of disease and lower family income,should be paid more attention.(2) Parents of children with chronic illness also had many stressors and high level of stress, they used limited active coping strategies,and the prevalence of anxiety disorders,the prevalence of depression disorders among them were high.The parents,whose children were absent from school and with serious disease condition,and the parents with lower education level and lower family income should be paid more attention.(3) The educational intervention resulted in improved knowledge level and less stressor of children and their parents,and improved coping strategies in parents.There was no evidence that the educational intervention could improve the psychosocial conditions of children and their parents.更多还原