北京市三类残疾儿童3年随访研究

目的了解0～6岁儿童残疾的转归及影响因素。方法 对2004年确定的269名三类发育残疾儿童进行追踪调查。智力诊断用Gesell发育诊断量表、韦氏儿童智力量表和婴幼儿-初中生社会适应量表;肢体诊断参照儿童的围产期因素和症状;精神残疾诊断采用CARS量表、克氏量表、孤独症行为检查表。儿童及家庭基本情况采用自设问卷。结果 智力发育残疾儿童转归"非智力残疾"124人(52.32%),肢体残疾儿童转归"非肢体残疾"5人(8.77%),精神残疾儿童转归为"非精神残疾"4人(15.38%)。结论 0～6岁儿童残疾是一种发育残疾,相当部分儿童随生长发育可退出残疾状态。     

北京市智力残疾儿童康复影响因素的Logistic回归分析

目的 了解智力残疾儿童康复的社会和家庭影响因素.方法 对2004年北京市残疾儿童调查中确定的237例智力残疾儿童进行问卷调查,对数据进行列联分析和Logistic回归分析.结果 Logistic回归分析显示,2004年的残疾程度( P<0.001)、现是否接受教育( P<0.05)、社区对儿童的态度( P<0.05)是智力残疾儿童康复的影响因素.结论 智力残疾儿童能否康复成功,首先取决于残疾程度,轻度残疾或中度残疾儿童在较好的社会和家庭环境中,通过正常的教育体系可以较好地康复,社会环境中社区对儿童的态度也对智力残疾儿童的康复有明显影响.     

江苏省0～6岁残疾儿童的流行病学调查

目的:了解目前江苏省残疾儿童的患病率及致残原因。方法:参照2001年全国0～6岁残疾儿童抽样调查所采用的方法抽查了江苏省0～6岁儿童9998人,进行了各类残疾的流行病学调查。结果:确诊各类残疾共86人,患病率为8.60/1000,其中智力残疾61例,肢体残疾27例,精神残疾9例,视力残疾4例,听力残疾4例,各类残疾的患病率分别为6.1/1000,2.70/1000,0.90/1000,0.40/1000,0.40/1000。结论:江苏省残疾儿童的患病率较1987年有明显下降,但残疾儿童的康复现状仍不容乐观。     

基于ICF-CY的残疾儿童综合性口语沟通功能调查

目的 调查残疾儿童的综合性口语沟通功能表现，探究个体特征和环境因素的影响。方法 2022年8月至11月，向上海、南京等地区2岁至5岁11个月的健康儿童和残疾儿童家长线上发放基于《国际功能、残疾和健康分类(儿童青少年版)》(ICF-CY)的“儿童沟通功能量表”进行问卷调查。结果 共发出问卷500份，收回有效问卷407份。其中健康儿童84例；残疾儿童中，听力障碍85例，智力障碍119例，脑瘫35例，孤独症84例。不同残疾类型儿童综合性口语沟通功能表现存在非常高度显著性差异(F=127.618, P <0.001)。各类型残疾儿童综合性口语沟通功能均低于健康儿童(P <0.05)，听力障碍儿童综合性口语沟通功能优于其他残疾类型儿童(P <0.05)。母亲学历(r=-0.311, P <0.001)、父亲学历(r=-0.280, P <0.001)和家庭年收入(r=-0.228, P <0.001)越高，儿童综合性口语沟通功能表现越好；当家庭沟通语言为普通话时，儿童的综合性口语沟通功能表现更好(r=0.210, P <0.001)。结论 儿童综合性口语...     

2006年中国孤独症儿童相关残疾状况分析

目的了解中国儿童孤独症相关的残疾流行病学数据,为相关工作者提供参考。方法抽取2006年第二次全国残疾人抽样调查中0～17岁孤独症残疾儿童的资料进行数据分析。结果 2006年中国0～17岁儿童中孤独症残疾率为0.212‰,男童孤独症残疾率(0.282‰)显著高于女童(0.132‰)(χ2=16.119,P=0.000),低年龄组儿童孤独症残疾率显著高于高年龄组(Linear-by-Linear As-sociation=30.101,P=0.000),城乡儿童孤独症残疾率无显著性差异(χ2=0.093,P=0.760);孤独症儿童残疾程度排列依次为:重度(32.8%),极重度(26.0%),轻度(22.1%),中度(19.1%);孤独症残疾儿童中接受过康复训练与服务的占73.3%,未接受过的占26.7%。结论孤独症残疾儿童是个较大群体,他们的康复、教育问题,特别是成年后的养护问题等都亟待社会的关注。     

北京市0～6岁智力残疾儿童3年随访研究

目的 了解0～6岁智力残疾儿童3年后的转归及其影响因素.方法 对象为2004年北京市残疾儿童调查中的0～6岁237例智力残疾儿童,问卷采用盖塞尔发展测验-中文修订版(Gesell)、韦氏智力测验、婴儿-初中生社会生活能力量表以及自设影响因素问卷.结果 3年随访结果为: "非智力残疾"的人数为124人,轻度发育残疾46人,中度发育残疾32人,重度发育残疾16人,极重度发育残疾19人.转归影响因素包括城区/郊区(B=-0.622)、父母是否知道如何在家为孩子进行康复训练(B=-0.470)、2004年Gesell量表中个人社交分项得分(B=-0.040).结论 智力残疾儿童会出现不同的转归,一些儿童可能会转归为"非智力残疾",但这些儿童还存在一定的问题.     

定西县2-6岁精神残疾儿童流行病学调查

目的调查定西县 2— 6岁精神残疾儿童患病率并探讨其危险因素。方法使用克氏孤独症行为量表 (CAB) ,儿童孤独症评定量表 (CARS量表 ) ,PEP心理教育量表等调查定西县 2— 6岁儿童 3 776名。结果确诊精神残疾 13例 (男性 10例、女性 3例 ) ,CAB阳性率为 4.76‰ ,患病率为 3 .44‰ ;脑器质性疾病致精神残疾者所占比例最高 ,为 61.5 4% ,合并智力低下者占 84.62 % ;精神残疾的危险因素有母亲文化程度、父母婚姻状况及近亲婚配、儿童抚养人及经济收入等。结论定西县 2 -6岁儿童精神残疾患病率较高 ,家庭状况及经济收入是精神残疾形成的重要因素。     

常州市0～6岁残疾儿童的流行病学调查

目的掌握目前常州市残疾儿童的患病率及致残原因。方法参照2001年全国0～6岁残疾儿童抽样调查所采用的方法对市区5个街道0～6岁儿童5102人进行了各类残疾的流行病学调查。结果确诊各类残疾共44人,患病率为8.62‰,各类残疾共57人次,残疾发生率为1.12%,其中智力残疾27人次,肢体残疾18人次,精神残疾7人次,视力残疾3人次,听力残疾2人次,残疾发生率分别为5.29‰、3.53‰、1.37‰、0.59‰、0.39‰。结论常州市残疾儿童的患病率较1987年有明显下降,但残疾儿童的康复现状仍不容乐观。     

贵阳市0-6岁残疾儿童抽样调查

目的了解贵阳市 0— 6岁儿童残疾情况。方法选择 12个街道计 914 5名 0— 6岁儿童为框架 ,随机整群抽取 4999名儿童为调查对象 ,采用 1987年残疾人抽样调查使用标准进行测查。结果贵阳市 0— 6岁儿童残疾率为 1.5 8% ,与全国总体残疾率 1.3 6%及吉林四平市等 3个地区相仿 (P >0 .0 5 ) ,高于天津和平区等 6个地区 (P <0 .0 5 )。各类型残疾率分别为 :智力残疾0 .92 %、综合残疾 0 .2 8%、肢体残疾 0 .2 4%、视力残疾 0 .1%、精神残疾 0 .0 3 %、听力残疾 0 .0 2 % ,其中智力残疾和视力残疾高于全国总体水平 (P <0 .0 5 )。结论残疾的发生与部分疾病有密切关系 ;儿童家庭经济困难、父母文化素质低下、未接受过学前教育等因素与残疾的发生有一定相关性 ;专业机构康复和社区康复相结合 ,是残疾儿童康复的主要形式。     

江苏省0～6岁残疾儿童的流行病学调查

目的：了解目前江苏省残疾儿童的患病率及致残原因。方法：参照2001年全国0～6岁残疾儿童抽样调查所采用的方法抽查了江苏省0～6岁儿童9998人，进行了各类残疾的流行病学调查。结果：确诊各类残疾共86人，患病率为8．60／1000，其中智力残疾61例，肢体残疾27例，精神残疾9例，视力残疾4例，听力残疾4例，各类残疾的患病率分别为6。1／1000,2．70／1000，0．90／1000，0．40／1000，0．40／1000。结论：江苏省残疾儿童的患病率较1987年有明显下降，但残疾儿童的康复现状仍不容乐观。     

Disability,spiritual beliefs and the church: the experiences of adults with disabilities and family members

AIMS: This paper reports the findings of a qualitative interpretive study that explored how people with disabilities and family members use their spiritual beliefs to establish meaning for disability, and to respond to the challenges of lived experience with disability. The participants' perceptions of the evangelical Christian church's influence on their spiritual experiences related to disability suggest recommendations for improved integration by the church. Applications are drawn for helping professionals and religious leaders who provide holistic care. BACKGROUND/RATIONALE: Although there is a well-established literature on coping in families with disabled children, little is known about how people use spiritual beliefs to establish meaning for and respond to life with disability. Even less is known about how people with a particular set of shared spiritual beliefs make meaning for lived experience with disability. DESIGN/METHODS: The author interviewed 30 persons, comprising two major groups: 13 parents of children with mixed developmental disabilities and nine adults with physical disabilities. Predominantly white, the participants lived in a south-western metropolitan area in the United States of America (USA) in 1998. FINDINGS: Trial or difficulty contributed to spiritual challenge, the breaking of self, reliance on God, and strengthened faith in God. The participants chose to live with thankfulness and joy despite difficulties common to experience with disability. The participants' spiritual beliefs stabilized their lives, providing meaning for the experience of disability, assistance with coping and other benefits. The participants' recommendations include increased assistance by the church in promoting theological understanding of disability, and religious support using a continuing model of caring. CONCLUSIONS: Although the study design limits the generalizability of the findings, applications can be drawn for helping professionals and religious leaders who provide holistic care     

Symptoms of Attention Deficit Hyperactivity Disorder in Children and Adults with Intellectual Disability: A Review

Background Despite a reported excess of attention deficit hyperactivity disorder (ADHD) symptoms in individuals with intellectual disability, it has been argued that ADHD symptoms have been under diagnosed and inadequately treated in individuals with intellectual disability. Materials and methods Published studies focussing on the level of ADHD symptoms in children and adults with intellectual disability are reviewed. Issues around screening for ADHD symptoms in individuals with intellectual disability and the validity of the diagnosis of ADHD are considered. Interventions including pharmacological studies are discussed with respect to published research. Results Reported prevalence rates of ADHD symptoms in individuals with intellectual disability vary significantly depending on instruments and diagnostic practices employed. Published research on interventions for individuals with ADHD has primarily focussed on pharmacological interventions. Conclusion Much less is known about ADHD in individuals with intellectual disability than about ADHD in individuals without intellectual disability. There is an urgent need to clarify baseline rates of ADHD in individuals with intellectual disability and to develop efficacious interventions to support affected individuals and their families.     

Mothers of Children Who have an Intellectual Disability: Their Attributions,Emotions and Behavioural Responses to Their Child’s Challenging Behaviour

Background This paper examines the application of Weiner’s attribution model to the responses of mothers to the challenging behaviour of their children who have an intellectual disability. It was expected that the attributions, assignment of responsibility and emotional and behavioural responses of mothers of children with an intellectual disability would vary as a function of the child’s behavioural topography and level of intellectual disabilities. The paper further examines whether, as suggested by Weiner’s model, anger mediates the effect of attribution of responsibility on likelihood of punishment as an intervention. Method Fifty‐six mothers of children with an intellectual disability rated their attributions, assignment of responsibility and emotional and behavioural responses to three vignettes describing challenging behaviours. Results Mothers rated their children as significantly more in control of, responsible for, and felt significantly more angry about aggressive behaviour than stereotypic behaviour and were significantly more likely to punish aggressive behaviour than self‐injurious or stereotypic behaviour. Regression analysis suggests that mothers who assign more responsibility to their child were more likely to consider punishing their child and that this relationship is mediated by anger. Conclusions The study offers support for some aspects of Weiner’s attribution model with this group of parents. Implications for clinical work with parents of children who have an intellectual disability are discussed.     

成年智力残疾人生活质量调查

目的考察成年智力残疾人的生活质量实际现状、内在期望和支持程度。方法以北京市成年智力残疾人、家长和亲友、基层康复工作者394人为研究对象，完成生活质量调查。结果成年智力残疾人本人对生活质量的主观期望显著高于所得到的支持和实际现状；家长及亲友对生活质量的主观期望显著高于成年智力残疾人本人、基层康复者。结论充分考虑残疾人的内在期望和要求，以支持的方式提高成年智力残疾人生活质量，是实现“人人享有康复服务”有效途径。     

Service Delivery to Parents with an Intellectual Disability: Family‐Centred or Professionally Centred?

Background Studies support the use of family‐centred practices in service delivery to families where a parent has an intellectual disability. This paper examines the importance of such practices to parents. Materials and Methods Interview responses from 32 parents with intellectual disability were coded by two independent raters as reflecting family‐centred or professionally centred practice. Responses reflecting family‐centred practice were then coded as ‘relational’ or ‘participatory’ helpgiving. Results Service characteristics considered helpful by parents were more likely to be rated as family‐centred practice than professionally centred practice. Family‐centred practices considered helpful were more likely to be coded participatory than relational helpgiving. Conclusions The results support the conclusion that parents find family‐centred practices more helpful than professionally centred practices, and participatory helpgiving more helpful than relational helpgiving. The findings are discussed in relation to the tendency for an ‘implementation lag’ in service delivery to families.     

Perceptions of Support in Chinese Mothers of a Child with Intellectual Disability

Mothers of a child with intellectual disability face various challenges in parenting. However, most studies of support for parents of a child with intellectual disability have been conducted with families from Western cultural backgrounds. Little is known about support for families of children with disabilities in China. This study explored the perceptions of Chinese mothers of a child with intellectual disability about the support that they received. Semi-structured interviews were carried out with twelve mothers of a school-aged child with intellectual disability. The data were analysed thematically. It was found that Chinese mothers received support mainly from family members, social contacts, school teachers, and the government. Family conflicts, isolation from friends and community, unequal relationships with school teachers, and restricted access to information appear to be the main barriers for mothers to accessing and utilizing the available support. This research points to potential areas of difference between the experiences of mothers in China and those in Western countries.     

Cohesion and parents' social relations in families with a child with disability or chronic illness.

We studied how a child's physical or intellectual disability or diabetes affected family cohesion, the parents' social life, work and leisure-time activities, and whether there was any association between the parents' social relations and family cohesion. The parents of 89 children aged 12-17 years returned a questionnaire and were interviewed by a social worker. Family cohesion increased in all the groups by an average of 27%. The effect was smallest in the families of children with diabetes, whereas in the families with intellectual or physical disability family cohesion increased from 6 to 13 times more often compared to the families of children with diabetes. The increased family cohesion was not associated with the change in the parents' social relationships, work, career or leisure-time activities; the importance of these activities did not decrease even though family cohesion increased. However, a child's chronic illness or disability affects the everyday life of the family, for instance 71% of the parents with diabetic children thought that the regularity of family life increased and about a half of the parents with physically or intellectually disabled children had to change their hobbies because of the child. In planning treatment and rehabilitation for a chronically ill or disabled child more attention should be paid to the whole family and its needs, not only to the child.     

孤独症患儿家长赋能现状及其影响因素分析

目的 调查孤独症患儿家长赋能现状,并探讨其影响因素。 方法 2021年1月—8月,在遵义市某特殊儿童康复机构,运用一般资料调查问卷、中文版特殊儿童家长赋能量表、Zarit照顾者负担量表、中文版特殊儿童家长需求量表及K10心理健康状况量表调查320名孤独症患儿家长。 结果 中文版特殊儿童家长赋能量表总分为（84.75±14.85）分,家庭管理维度得分为（21.50±3.78）分、自我效能维度得分为（18.27±3.68）分、利用服务的能力维度得分为（13.94±3.46）分、利用服务的行为维度得分为（11.49±2.98）分、对服务系统的了解维度得分为（10.38±2.94）分、倡导改善服务维度得分为（9.17±2.96）分;多重线性回归结果显示,患儿康复治疗费用报销、照顾者负担、家长需求、心理健康状况是孤独症患儿家长赋能的主要影响因素（P<0.05）。 结论 孤独症患儿家长赋能现状有待改善,采用医保报销加残联补助方式报销的家长赋能水平较高;当家长照顾负担越重,需求越高,心理健康状况越差,其赋能水平越低。未来可参照影响因素制订孤独症患儿家长赋能的干预措施,减轻患儿家长的照护负担。     

‘If We are Going to Include Them We have to do it Before We Die’: Norwegian Seniors’ Views of Including Seniors with Intellectual Disability in Senior Centres

Background Concepts of inclusion and participation are at the core of both international and Norwegian policy for people with intellectual disability. The aim of this study was to identify senior centre users’ views of the barriers and solutions to the inclusion of seniors with intellectual disability in community senior centres. Method Thirty seniors without intellectual disability participated in one of four focus groups. The groups were recorded and transcribed verbatim. Data were analysed for themes using the constant comparative method of qualitative analysis. Results Major themes included benefits, perceptions of people with intellectual disability, barriers and solutions to inclusion, need for support and need for information. Conclusions The findings suggest that participants agreed that seniors with intellectual disability could benefit from being a senior centre user. Consideration must be given to this group’s need for assistance, staff education, economic resources and ways to overcome negative community attitudes towards people with intellectual disability.