1型糖尿病患儿照顾者真实体验与需求质性研究的Meta整合

目的系统评价1型糖尿病患儿照顾者的真实体验及需求。方法计算机检索万方数据库、中国知网、维普网、中国生物医学文献数据库、PubMed、Cochrane Library、Web of Science和Embase数据库中1型糖尿病患儿照顾者真实体验与需求的质性研究。检索时限为建库至2022年3月6日。由2名研究者独立进行文献筛选和数据提取。采用澳大利亚乔安娜布里格斯研究所(Joanna Briggs Institute, JBI)循证卫生保健中心质性研究质量评价标准(2016)进行文献质量评价。采用汇集性整合方法进行结果整合。结果共纳入15篇研究, 提炼出62个研究结果, 形成8个类别, 3个整合结果, 即1型糖尿病患儿照顾者在患儿确诊初期承受多重压力和负担;照顾者在居家照护时期因知识经验与支持力度不足, 渴望获得多方面的支持;照顾者逐渐适应疾病带来的角色转变, 积极应对并重拾信心。结论家庭、医疗机构和社会应关注1糖尿病患儿照顾者的心理情绪, 提供信息、心理、经济及社会支持, 协助其更好地胜任照顾者角色, 改善患儿和照顾者的生活质量。     

急性白血病患儿照顾者真实体验及需求的质性Meta整合

目的系统评价急性白血病患儿照顾者的真实体验及需求。方法计算机检索PubMed、Ebsco、Web of science、Medline及Cochrane Library 5个英文数据库和中国知网(CNKI)、万方及维普3个中文数据库中关于急性白血病患儿照顾者真实体验及需求的质性研究,检索时限从建库至2020年11月。采用澳大利亚JBI循证卫生保健中心质性研究质量评价标准进行质量评价后,采用Meta汇集性整合方法对纳入的文章进行整合。结果共纳入15篇文献,提炼出56个明确结果,归纳形成9个新类别,最终形成3个整合结果:(1)急性白血病患儿照顾者因支持系统较薄弱且要承担多重压力和负担而出现了多方面的担忧和复杂的心理体验。(2)儿童急性白血病是一种家庭性疾病,多维度影响到照顾者个人、家庭和社会方面。(3)急性白血病患儿照顾者因缺乏疾病知识和应对策略,渴望得到多方面的照护与支持,产生了多元化需求。结论家庭、医疗机构和社会应多关注急性白血病患儿照顾者,并为其提供心理、社会及经济支持,以促进白血病患儿及照顾者的身心健康。     

孤独症谱系障碍患儿父母照护体验的Meta整合

目的:Meta整合孤独症谱系障碍(ASD)患儿父母的照护体验。方法:计算机检索PubMed、Web of Science、The Cochrane Library、EMbase、中国生物医学文献数据库、中国知网、维普数据库及万方数据库,收集关于ASD患儿父母真实照护体验的质性研究,检索时限均为建库至2021年1月31日。采用澳大利亚Joanna Briggs Institute(JBI)循证卫生保健中心质性研究质量评价标准对纳入研究进行质量评价,并按照Meta整合的方法对结果进行整合。结果:共纳入14项研究,提炼54个研究结果,归纳形成9个新类别,合成3个整合结果(父母承受巨大的身体、心理压力;缺少疾病知识并且不被家庭、社会所理解,渴望获得知识信息和他人支持;生活方式改变,努力调整以适应照护角色)。结论:现有证据表明,医护人员应了解ASD患儿父母的身体、心理反应及需求,给予必要的支持和指导,减轻父母生活压力,提高对患儿的照护质量。     

癌症患者照顾者疾病获益感体验的Meta整合

目的 系统评价和整合癌症患者照顾者疾病获益感体验的质性研究。方法 计算机检索Pubmed、Web of Science、CINAHL、Cochrane Library、Embase、CBM、维普、万方、中国知网等国内外数据库,检索关于癌症患者照顾者疾病获益感真实心理体验的质性研究;检索时限均为建库至2021年9月。采用澳大利亚JBI质性研究质量评价标准(2016)进行文献质量评价,通过汇集性整合方法对结果进行整合。结果 共纳入7项研究,提炼出36个研究结果,归纳形成8个新类别,综合为3个整合结果：(1)照顾者积极适应角色,增强照护技能。(2)照顾者感悟生活意义,助力个人提升。(3)个人信仰、家庭关系、社会支持是照顾者疾病获益感的保护性因素。结论 医护人员应重视照顾者在照护历程中的心理感受,积极挖掘正面情绪,多方探索疾病获益感的保护性因素,帮助照顾者强化支持系统,增强照护信心。     

先天性心脏病患儿父母照顾体验的系统评价及Meta整合

目的系统评价先天性心脏病(CHD)患儿父母的照顾体验。方法计算机检索CNKI,维普中文期刊服务平台,万方数据库,中国生物医学文献数据库,Web of Science,Embase,Cochrane Library,PubMed,澳大利亚循证卫生保健中心图书馆(Joanna Briggs Institute Library),CINAHL中收录的关于CHD患儿父母照顾体验的质性研究,检索时间均为建库至2019年7月。采用“澳大利亚JBI循证卫生保健中心质性研究质量评价标准”评价,采用汇集性整合方法对结果进行整合。结果共纳入8项研究,提炼29个明确的研究结果,将相似结果归纳组合形成8个新的类别,并综合成2个整合结果。整合结果1:经过自我调适,照顾者角色获得成长;整合结果2:照顾者怀着感恩之心并希望得到社会的支持。结论护理人员需关注CHD患儿父母的心理状态,给予必要的照顾知识技能指导,协助其尽快胜任照顾者这一角色,提高以家庭为中心的CHD患儿照护质量。     

截瘫患者直接照顾者照护体验的质性研究

目的深入了解截瘫患者直接照顾者照护过程的真实体验及需求,为提高截瘫患者家庭的生活质量提供帮助。方法采用立意抽样法选择17名截瘫患者直接照顾者作为研究对象,进行深入访谈,采用Colaizzi分析法对资料进行分析、整理并提炼主题。结果截瘫患者直接照顾者的照护体验包括以下7个方面:极度震惊和无法接受;心存侥幸;持续的身心疲惫;羞耻感;经济负担过重;缺乏经验;渴望社区服务。结论截瘫患者直接照顾者的体验受疾病进程的影响,且其社会支持体系不够完善;医护人员及社会机构除了关心患者外,还应主动关心其直接照顾者,帮助他们解决照护过程中的需求和困难。     

国内痴呆症患者照顾者照护体验质性研究的Meta整合

目的 评价我国痴呆症患者照顾者的照护体验。方法 运用CNKI、VIP、WanFang Data、PubMed、EBSCO、EMBase、CINAHL Complete、Cochrane Library检索有关国内痴呆症患者照顾者照护体验的文献,采用澳大利亚JBI循证卫生保健中心质性研究质量评价标准评价纳入文献质量,按照Meta整合方法对结果进行汇总。结果 共纳入11篇质性研究,总结出28个结果,概括为4个类别,最后提炼出2个整合结果。整合结果1：照顾者通过自我调节,角色适应能力逐渐增强。整合结果2：照顾者渴望得到家庭-医院-社区-社会的帮助和支持。结论 建立家庭-医院-社区-社会为一体的全面支持系统对于提高痴呆症患者及其照顾者的生活质量具有重要意义。     

脑卒中病人家属照护体验质性研究的系统评价

[目的]整合相关质性研究,系统评价脑卒中病人家属长期照护的内心感受和情感体验,为医院、社区和家庭的延续性护理提供依据。[方法]计算机检索OVID MedLine、CINAHL、PubMed英文数据库以及中国生物医学数据库、中国知网、万方、维普中文数据库,收集关于脑卒中病人家属照护体验的质性研究,检索时限均为建库至2018年8月。采用澳大利亚JBI循证卫生保健中心质性研究质量评价标准(2016)对文献进行质量评价,采用Meta整合中的汇集性整合方法进行结果整合。[结果]共纳入41项研究,提炼出153个研究结果,归纳整合形成8个新的类别,合成3个整合结果。整合结果 1:照护者在照护过程中均会产生巨大的身体和心理压力,原有的家庭关系和日常生活会有所改变;整合结果 2:照顾者在照顾过程中产生满足感和疾病获益感;整合结果 3:知识、信息、关爱等支持系统缺乏,需要家庭、社会、医疗卫生系统的支持。[结论]在关注脑卒中病人延续护理的过程中,应同时关注其照护家属的心理感受并给予心理支持,促进脑卒中病人及其家属的身心健康。     

脑瘫患儿主要照顾者家庭支持需求现状及影响因素分析

目的:探讨脑瘫患儿家庭支持需求情况及其影响因素。方法:采用脑瘫患儿家庭需求问卷,对黔北地区3所儿童神经康复医疗机构就诊的120名脑瘫患儿主要照顾者进行调查,应用单因素及Logistic多因素分析脑瘫患儿主要照顾者家庭需求的相关影响因素。结果:脑瘫患儿主要照顾者家庭总体需求评分为(95.22±8.25)分,其中信息需求及经济需求为最主要的需求,分别为(20.12±3.10)分、(16.28±3.10)分。经Logistic多因素分析显示,脑瘫家庭主要照顾者学历、月收入、主要照顾者年龄、家庭结构、医疗方式、脑瘫儿病情等因素,是影响脑瘫患儿主要照顾者家庭总需求的独立因素。结论:脑瘫患儿主要照顾者家庭支持需求较高,照顾者家庭状况、经济状况及脑瘫儿病情可影响其家庭总需求,加强脑瘫儿家庭主要照顾者家庭支持,将有助于提高照顾者生活质量,确保脑瘫儿能获得有效的照护。     

帕金森病患者照顾者照护体验质性研究的Meta整合

目的 系统评价帕金森病患者主要照顾者的真实体验,为医院、社区更好地开展服务工作提供依据。方法 计算机检索PubMed、Web of Science、EBSCO、EMBase、Cochrane Library、中国知网、万方数据库、维普数据库,检索关于帕金森病患者主要照顾者真实体验的质性研究,检索时间从建库至2019年10月。采用澳大利亚JBI循证卫生保健中心质性研究质量评价标准评价纳入文献质量,按照Meta整合方法进行整合与分析。结果 共纳入15篇相关文献,将研究结果重新归纳分类,提炼47个结果,将相似结果归纳组合形成8个新的类别,并综合成3个整合结果。整合结果1为照顾帕金森病患者给照顾者带来的影响,包括4个类别：经济负担、身体负担、心理负担、角色挑战;整合结果2为帕金森病患者照顾者的积极应对,包括2个类别：自我调节、胜任力建立;整合结果3为帕金森病患者照顾者的需求,包括2个类别：与帕金森病患者管理相关的需求、帕金森病患者照顾者自身需求。结论 照顾帕金森病患者给照顾者带来多方面的负担和影响,照顾者渴望信息等多方面的支持,在照顾过程中照顾者照护能力提升。政府、医疗机构、社区应重视帕金森病照顾者的真实感受和需求,为其提供针对性照护指导和支持性帮助,提高帕金森病患者及照顾者的生活质量。     

脑瘫患儿主要照顾者疾病不确定感与社会支持及心理弹性的相关性研究

目的 探讨脑瘫患儿主要照顾者的疾病不确定感现状,及其与社会支持、心理弹性的相关性。 方法 采取方便抽样,选取300例脑瘫患儿的主要照顾者进行疾病不确定感量表、社会支持评定量表和心理弹性量表的调查。 结果 脑瘫患儿主要照顾者的疾病不确定感得分为(71.25±8.38)分,社会支持得分为(28.12±5.56)分,心理弹性得分为(62.98±4.22)分;疾病不确定感总分及信息缺乏维度与社会支持总分及支持利用度维度,与心理弹性总分及乐观性维度均呈负相关(P<0.05)。 结论 脑瘫患儿主要照顾者的疾病不确定感处于中等水平。医护人员在关注脑瘫患儿治疗和护理时,需评估患儿主要照顾者的社会支持状况和心理弹性状况,引导其建立有效的社会支持系统,降低疾病不确定感。     

脑瘫患儿家庭主要照顾者负担及影响因素分析

目的探讨影响脑瘫患儿家庭主要照顾者负担的因素。方法应用一般资料调查问卷、Zarit照顾者负担量表和社会支持评定量表对120例脑瘫患儿主要照顾者进行问卷调查。结果脑瘫患儿家庭主要照顾者承受的负担总分为(40.94±10.27)分,表示存在中度负担;社会支持总分为(32.51±5.57)分,表示社会支持度较低。家庭主要照顾者负担受脑瘫患儿的瘫痪程度、自付医疗费用占家庭总收入比、社会支持总分的影响。结论脑瘫患儿家庭主要照顾者普遍承受着不同程度的负担,政府及社会应通过多种形式和渠道降低脑瘫患儿家庭医疗费用的支出,加强和完善脑瘫患儿社区康复以及家庭主要照顾者社会支持网络,以降低照顾者负担水平,提高照顾者生活质量。     

脑瘫患儿主要照护者焦虑、抑郁状况影响因素分析

目的：探讨脑瘫患儿主要照护者焦虑、抑郁现状及影响因素,为改善主要照护者心理健康状况,提高患儿康复治疗水平提供参考依据。方法采用焦虑自评量表（ SAS）、抑郁自评量表（ SDS）、世界卫生组织生存质量测定量表简表（ WHOQOL-BREF ）,整群抽取145名住院脑瘫患儿的照护者进行调查。结果脑瘫患儿主要照护者焦虑和抑郁的发生率分别为42．76％和53．79％,焦虑水平为（47．73＆#177;10．96）分,显著高于国内常模（29．78＆#177;0．46）分,差异有统计学意义（t＝19．730,P＜0．01）。焦虑、抑郁得分随着生命质量得分增加而增加。单因素分析结果显示：不同职业、文化程度、年龄、月收入、有无并发症间焦虑发生率差异有统计学意义（χ2分别为11．695,10．787,3．919,5．133,9．942;P＜0．05）,不同性别、年龄组间抑郁的发生率差异有统计学意义（χ2分别为10．393,8．919;P＜0．05）。经多因素Logistic逐步回归分析结果显示：女性照护者、有并发症、以半自费和新农合为医疗形式的照护者更容易出现抑郁情绪;工人、农民、病程在10年以上的照护者更容易出现焦虑情绪。结论脑瘫患儿照护者心理状况较差,存在比较严重的焦虑和抑郁情况。医务工作者应在进行患儿康复的同时,注意主要照护者心理状况的改变,对他们进行健康教育和心理关怀。对于已经出现心理疾病的主要照护者建议他们及时进行心理治疗,从而全面提高患儿的康复水平。     

Impact of caring for children with cerebral palsy on the general health of their caregivers in an African community

Caring for children with physical disabilities such as cerebral palsy can have an impact on the health of their caregivers. Records show a dearth of literature on the health impact of caring for children with cerebral palsy (CP) in Africa. This study compared the general health of caregivers of children with cerebral palsy (CGCP) with that of caregivers of age-matched children without cerebral palsy (CGNCP). The relationship between severities of motor disorder in children with CP and the general health of their caregivers was also investigated. Participants comprised 71 CGCP and 70 CGNCP in the Yoruba community of South-Western Nigeria. The General Health Questionnaire was administered to all participants and the severity of motor disorder was assessed in children with cerebral palsy using the Gross Motor Function Measure-66. Results showed significantly higher General Health Questionnaire scores in the caregivers of children with cerebral palsy than in the caregivers of age-matched children without cerebral palsy group (U=1237.5, P=0.00). No significant correlation was found between the Gross Motor Function Measure and General Health Questionnaire scores of the caregivers of children with cerebral palsy (rho=-0.104). Caring for children with cerebral palsy apparently had a negative impact on the health of their caregivers when compared with the health of caregivers of children without cerebral palsy. It seemed that severity of motor disorder in cerebral palsy had no direct bearing on the health status of caregivers.     

Family Caregivers Discuss Roles and Needs in Supporting Adults with Cerebral Palsy and Complex Communication Needs in the Hospital Setting

The aim of this study was to explore the views of family caregivers of adults with cerebral palsy and complex communication needs (CCN) on their roles in the hospital setting and what would help them in these roles. As part of a larger study we conducted one focus group with six family caregivers who together explored issues surrounding involvement of family caregivers on the hospital ward. Participants described being involved in supporting communication and providing valuable information and guidance to hospital staff in caring for adults with cerebral palsy and CCN. The participants also suggested strategies to support family caregivers in their roles, to improve collaboration, and to benefit the patient with cerebral palsy and CCN. In this paper the authors present results of the focus group and discuss implications for policy and practice.     

Lower extremity orthoses in children with spastic quadriplegic cerebral palsy: implications for nurses, parents, and caregivers

Understanding trends in the prevalence of children with cerebral palsy is vital to evaluating and estimating supportive services for children, families, and caregivers. The majority of children with cerebral palsy require lower extremity orthoses to stabilize their muscles. The pediatric nurse needs a special body of knowledge to accurately assess, apply, manage, teach, and evaluate the use of lower extremity orthoses typically prescribed for this vulnerable population. Inherent in caring for these children is the need to teach the child, the family, and significant others the proper application and care of the orthoses used in hospital and community settings. Nursing literature review does not provide a basis for evidence in designing and teaching orthopaedic care for children with orthoses. A protocol for orthoses management has been developed to assist caregivers to accurately care for children with lower extremity orthotic devices.     

脑性瘫痪患儿家属对康复效果的影响因素

目的研究影响脑瘫患儿康复效果的家属因素。方法对153 例脑瘫患儿的153 名家属,采用家庭基本情况、对患儿疾病了解程度、依从性3 项自制调查问卷和艾森克人格量表、婚姻质量问卷、社会支持量表、症状自评量表、幸福感指数5 项标准调查问卷进行调查;康复前后采用残疾儿童综合功能评定法对患儿进行评定。结果康复有效、无效的患儿间,家属的依从性、对患儿疾病了解程度、家中有无健康子女、艾森克人格内外向和掩饰性、症状自评6 项因素有显著性差异(P<0.05)。多因素Logistic回归分析显示,家中有无健康子女、内外向人格、症状自评是影响患儿康复效果的独立因素。结论脑瘫患儿的家庭状况、家长的人格特征和心理健康影响患儿康复效果。     

Dynamic resources used in ambulation by children with spastic hemiplegic cerebral palsy: relationship to kinematics, energetics, and asymmetries

BACKGROUND AND PURPOSE: The atypical walking pattern in children with spastic cerebral palsy is assumed to involve kinematic and morphological adaptations that allow them to move. The purpose of this study was to explore how the requirements of the task and the energy-generating and energy-conserving capabilities of children with cerebral palsy relate to kinematic and mechanical energy patterns of walking. SUBJECTS: Six children with hemiplegic cerebral palsy and a matched group of typically developing children participated in the study. METHODS: Kinematic data were collected at 5 different walking speeds. Vertical stiffness, mechanical energy parameters, and landing angle were measured during the stance phase. RESULTS: The affected side of the children with cerebral palsy showed greater vertical stiffness, a greater ratio of kinetic forward energy to potential energy, and a smaller landing angle when compared with those of the nonaffected lower extremity and with those of typically developing children. DISCUSSION AND CONCLUSION: Previous research has shown that children with cerebral palsy assumed a gait similar to an inverted pendulum on the nonaffected limb and a pogo stick on the affected limb. Our results indicate that asymmetries between lower extremities and differences from typically developing children in the landing angle of the lower extremity, vertical lower-extremity stiffness, and kinetic and potential energy profiles support the claim that walking patterns in children with spastic hemiplegic cerebral palsy emerge as a function of the resources available to them.     

The health of children with cerebral palsy and stress in their parents

Title.  The health of children with cerebral palsy and stress in their parents.
Aim.  This paper is a report of a study conducted to describe the health of children with cerebral palsy and investigate predictors of stress in their parents.
Background.  Children with severe cerebral palsy tend to have poorer health than their able-bodied peers, and their parents are more likely to be stressed and have poorer health.
Method.  A cross-sectional survey with home visits using standard questionnaires was administered to parents in 2004–05. A total of 102/199 (51%) children and parents participated. The children were compared with a normative sample.
Results.  Children with cerebral palsy had poorer physical health, and 79% of parents reported that their child had moderate to severe pain. Their poorer health, in comparison with the normal sample and measured by the Child Health Questionnaire, was related to feeding problems and seizures, general health perceptions to intellectual and feeding impairment, and family activities with severe motor, intellectual and feeding impairment. Poorer psychological well-being on the hyperactivity domain of the Strengths & Difficulties Questionnaire was related to feeding difficulties, on the prosocial domain to more severe forms of all child impairments, and on the social impairment scale to intellectual impairment. Children with psychological problems had statistically significantly increased odds (OR = 7·2, 95% CIs 2·6–20·3) of having parents with high stress.
Conclusion.  Children with cerebral palsy and associated impairments are at higher risk of poorer health and family well-being. A family-centred approach to the care of children with cerebral palsy and their families is essential to ensure both receive adequate care and support.