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Brief report on six clinical cases of trauma in families that have children and adults who have a learning disability and/or are autistic 关于有学习障碍和/或自闭症儿童和成人的家庭中6例创伤临床病例的简要报告
IF 0.6 Q4 EDUCATION, SPECIAL Pub Date : 2022-05-03 DOI: 10.1108/tldr-08-2021-0022
N. Blackman, Konstantinos Vlachakis, Anna Annes, S. Griffin, Peter Baker
PurposeResearch and anecdotal clinical work indicate that complex post-traumatic stress disorder (CPTSD) in families that have children and adults who have a learning disability and/or are autistic may be prevalent. This paper aims to provide a preliminary formulation of complex trauma in families.Design/methodology/approachThis report is based on a review of clinical psychotherapeutic work with six families. The themes are derived from the assessment period through examining the assessment reports and clinical supervision notes for thematic patterns.FindingsThis report suggests that the prevalence of CPTSD in families of people who have a learning disability and/or are autistic needs to be researched across the family lifecycle and that there are specific factors that mediate complex trauma symptomatology.Originality/valueCPTSD symptomatology in these families is inadequately conceptualised and this is one of the first papers suggesting this as a potentially helpful framework to consider the experiences of families.
目的研究和轶事临床工作表明,在有学习障碍和/或自闭症儿童和成人的家庭中,复杂的创伤后应激障碍(CPTSD)可能很普遍。本文旨在提供一个家庭复杂创伤的初步公式。设计/方法/方法本报告基于对六个家庭的临床心理治疗工作的回顾。主题来源于评估期,通过检查评估报告和临床监督说明了解主题模式。研究结果本报告表明,学习障碍和/或自闭症患者家庭中CPTSD的患病率需要在整个家庭生命周期中进行研究,并且有一些特定因素介导复杂的创伤症状。这些家庭的独创性/价值CPTSD症状学没有得到充分的概念化,这是第一篇将其作为考虑家庭经历的潜在有用框架的论文之一。
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引用次数: 0
Empowering caregivers of children with learning and developmental disabilities: from situation analysis to community-based inclusive development in Kilifi, Kenya 赋予学习和发育障碍儿童照顾者权力:从情况分析到肯尼亚基利菲的社区包容性发展
IF 0.6 Q4 EDUCATION, SPECIAL Pub Date : 2022-03-08 DOI: 10.1108/tldr-08-2021-0023
K. Bunning, J. Gona, C. Newton, S. Hartley
PurposeRaising a child with learning and developmental disabilities in a low-income setting is challenged by inadequate resources, limited support and poverty. The impacts on caregivers include fatigue, distress and isolation. The purpose of this paper is to report on a programme (2008-2021) that was set up in Kilifi County, Kenya to investigate and address these difficulties.MethodologyThe programme used mixed methods through a series of interconnected studies, starting with a situation analysis, followed by a home-based intervention where the caregiver served as agent for change using augmentative and alternative communication (AAC) methods. This was followed by two community-based inclusive development initiatives: disability awareness training to community groups and empowering self-help groups for caregivers of children growing up with disabilities.FindingsThe situation analysis revealed scarce support services for caregivers and children with learning and developmental disabilities, with report of limited resources, inadequate coverage and poor professional practice. A home-based, AAC intervention was associated with improved caregiver well-being, significant positive changes to caregiver perceptions of the child’s communication and some expansion to the child’ social activities. However, questions around sustainability persisted. Disability awareness training led by persons with lived experience of disability showed positive changes to the views, values and attitudes of established community groups. Caregiver participation in self-help groups was associated with their greater personal agency, perceptions of increased social support and reduced severity of child’s disability.OriginalityThe programme narrative demonstrates a rationalised and evidence-based process for community-based inclusive development that is low cost, culturally acceptable, with potential for sustainability.
在低收入环境中抚养有学习和发育障碍的儿童面临着资源不足、支持有限和贫困的挑战。对护理人员的影响包括疲劳、痛苦和孤立。本文的目的是报告在肯尼亚基利菲县设立的一项计划(2008-2021年),以调查和解决这些困难。方法该项目通过一系列相互关联的研究使用混合方法,从情况分析开始,然后是基于家庭的干预,其中护理人员使用增强和替代沟通(AAC)方法作为变革的推动者。随后又开展了两项以社区为基础的包容性发展倡议:对社区团体进行残疾意识培训,并向照顾残疾儿童的自助团体赋权。情况分析显示,护理人员和学习发育障碍儿童的支持服务匮乏,资源有限,覆盖范围不足,专业实践不足。以家庭为基础的AAC干预可以改善照顾者的幸福感,显著改善照顾者对儿童沟通的看法,并在一定程度上扩大儿童的社会活动。然而,围绕可持续性的问题依然存在。由亲身经历过残疾的人士领导的残疾意识培训表明,现有社区团体的观点、价值观和态度发生了积极变化。照顾者参与自助小组与他们更大的个人能动性、增加的社会支持和降低儿童残疾的严重程度有关。方案叙述展示了一个合理的、以证据为基础的以社区为基础的包容性发展过程,这种发展成本低、文化上可接受、具有可持续性潜力。
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引用次数: 1
Commentary on “Empowering caregivers of children with learning and developmental disabilities: from situation analysis to community-based inclusive development in Kilifi, Kenya” 关于“增强有学习和发育障碍儿童的照顾者的能力:从形势分析到肯尼亚基利菲的社区包容性发展”的评论
IF 0.6 Q4 EDUCATION, SPECIAL Pub Date : 2022-03-07 DOI: 10.1108/tldr-11-2021-0035
Kathy Leadbitter, G. Divan
PurposeThis paper is a commentary which aims to address themes arising from the article by Bunning et al. entitled “Empowering caregivers of children with learning and developmental disabilities: from situation analysis to community-based inclusive development in Kilifi, Kenya”.Design/methodology/approachThis commentary provides discussion stimulated by the paper by Bunning et al., including important areas for consideration when developing and evaluating care pathways or solutions to providing support to families of children with disabilities in low- and middle-income countries.FindingsThis commentary highlights issues such as: the value of transported and home-grown approaches; the importance of empowerment and advocacy; and the benefits of equitable collaborative partnerships between researchers in low- and middle-income countries and those in high-income countries.Originality/valueThis is the personal perspective of two collaborators who have been working in the field of service delivery of complex interventions for children with developmental disabilities in high- and low-income country settings.
目的本文是一篇评论文章,旨在探讨Bunning等人题为“赋予学习和发育障碍儿童的照顾者权力:从肯尼亚基利菲的情况分析到基于社区的包容性发展”的文章中产生的主题。,包括在制定和评估向中低收入国家残疾儿童家庭提供支持的护理途径或解决方案时需要考虑的重要领域。发现这篇评论强调了以下问题:运输和本土方法的价值;赋予权力和宣传的重要性;以及中低收入国家和高收入国家研究人员之间公平合作伙伴关系的好处。独创性/价值这是两位合作者的个人观点,他们一直在为高收入和低收入国家的发育残疾儿童提供复杂干预措施的服务领域工作。
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引用次数: 0
Intellectual disability in Switzerland: the UN Convention on the Rights of Persons with Disabilities, as a vehicle for progress 瑞士的智力残疾:《联合国残疾人权利公约》作为进步的载体
IF 0.6 Q4 EDUCATION, SPECIAL Pub Date : 2022-02-02 DOI: 10.1108/tldr-07-2021-0019
Eva Büschi, Gabriela Antener, Anne Parpan-Blaser
PurposeThis paper aims to provide an overview of the history, current status and future challenges for intellectual disability (ID) policy and practice in Switzerland.Design/methodology/approachFollowing a review of the literature, academics in the field of ID in Switzerland reflect on critical issues.FindingsThe implementation of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) has resulted in the move from institutions to more flexible and individualised, community-based support services.Originality/valueThis paper describes a Western-European country facing the challenges of deinstitutionalisation to become an inclusive society due to directions given by the CRPD.
目的本文旨在概述瑞士智障政策和实践的历史、现状和未来挑战。设计/方法/方法在回顾文献后,瑞士智障领域的学者反思了关键问题。调查结果《联合国残疾人权利公约》(CRPD)的实施使机构转向了更灵活、个性化、基于社区的支持服务。原创性/价值本文描述了一个西欧国家,由于《残疾人权利公约》的指示,该国面临着去机构化的挑战,成为一个包容性社会。
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引用次数: 0
Commentary on: intellectual disability in Switzerland: the Convention on the Rights of Persons with Disabilities as a vehicle for progress 评论:瑞士的智力残疾:作为进步工具的《残疾人权利公约》
IF 0.6 Q4 EDUCATION, SPECIAL Pub Date : 2022-02-02 DOI: 10.1108/tldr-11-2021-0036
G. Petri
PurposeThe purpose of this paper is to provide a commentary on “Intellectual disability in Switzerland: the UN Convention on the Rights of Persons with Disabilities, as a vehicle for progress”.Design/methodology/approachThis commentary highlights the importance of including people with intellectual disabilities in human rights reporting. The commentary builds on available data from academic research as well as civil society reports.FindingsThree main aspects are presented: the lack of involvement of people with intellectual disabilities in human rights reporting, the barriers to their participation in developing and publishing human rights reports and possible strategies to tackle those barriers.Originality/valueThe United Nations Convention on the Rights of Persons with disabilities (CRPD) makes it mandatory to include people with intellectual disabilities in policy-making as well as in monitoring the CRPD. Academics need to change their practice to include people with intellectual disabilities in human rights research.
目的本文的目的是对“瑞士的智力残疾:作为进步工具的联合国残疾人权利公约”发表评论。设计/方法/方法本评论强调了将智障人士纳入人权报告的重要性。该评论以学术研究和民间社会报告的现有数据为基础。发现主要有三个方面:智障人士没有参与人权报告,他们参与编写和出版人权报告的障碍,以及解决这些障碍的可能战略。独创性/价值《联合国残疾人权利公约》规定,必须将智障人士纳入决策和监督《公约》。学术界需要改变他们的做法,将智障人士纳入人权研究。
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引用次数: 1
“Lost in the literature.” People with intellectual disabilities who identify as trans: a narrative review “迷失在文学作品中。”认同为跨性别者的智障人士:叙述性回顾
IF 0.6 Q4 EDUCATION, SPECIAL Pub Date : 2022-02-02 DOI: 10.1108/tldr-04-2021-0009
N. Keates, Eleanor F. A. Dewar, K. Waldock
PurposeThis narrative review aims to examine how trans people with intellectual disabilities are perceived and discussed in the academic literature.Design/methodology/approachA narrative review was carried out to better understand the positioning of people with intellectual disabilities who identify as trans.FindingsThere was a lack of clear terminology, an over medicalization of both people with intellectual disabilities and trans people and evidence that identifying with a non-conforming gender identity was seen as a problem by services. Services need to be better informed about issues around gender identity so that they are able to better support trans people with intellectual disabilities.Originality/valueTo the best of the authors’ knowledge, no previous literature review has focused only on trans people with intellectual disabilities.
目的本研究旨在探讨跨性别智障人士在学术文献中的认知和讨论。设计/方法/方法进行了一项叙述性回顾,以更好地了解那些认为自己是变性人的智障人士的定位。调查结果:缺乏明确的术语,对智障人士和跨性别人士的过度医疗化,有证据表明,认同不符合标准的性别认同被服务机构视为一个问题。服务部门需要更好地了解有关性别认同的问题,以便他们能够更好地支持有智力残疾的跨性别者。原创性/价值据作者所知,以前没有文献综述只关注智力残疾的跨性别者。
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引用次数: 0
Adapted guided self-help booklets for supporting the well-being of people with intellectual disabilities during the COVID-19 pandemic: an evaluation of impact 为支持2019冠状病毒病大流行期间智障人士的福祉而改编的自助指南手册:影响评估
IF 0.6 Q4 EDUCATION, SPECIAL Pub Date : 2022-01-24 DOI: 10.1108/tldr-08-2021-0024
R. Maguire, C. Pert, S. Baines, A. Gillooly, R. Hastings, C. Hatton, D. Dagnan, A. Jahoda
PurposeThe COVID-19 pandemic meant that it became impossible for many individuals with intellectual disability to access specialist mental health support. The purpose of this study was to evaluate a set of guided self-help resources adapted for delivery on an outreach basis.Design/methodology/approachThe use and impact of the resources were evaluated through: data about downloads and requests for printed materials; interviews with individuals who used the resources; webinars with organisations; family members and support workers who had delivered the resources and an online survey with individuals who had delivered the resources.FindingsThe resources had considerable reach, with over 12,555 printed copies requested from across Scotland. The materials were perceived to be relevant and useful, helping individuals to talk about difficulties and to be aware that others were facing similar challenges.Originality/valueThe findings highlight the potential long-term value of guided self-help resources to help promote well-being that can be delivered on an outreach basis by family members and social care organisations.
2019冠状病毒病大流行意味着许多智障人士无法获得专业的心理健康支持。本研究的目的是评估一套适用于外展基础的指导自助资源。设计/方法/方法通过以下方式评估资源的使用和影响:关于下载和要求印刷材料的数据;与使用资源的个人进行访谈;与机构合办网络研讨会;提供资源的家庭成员和支持人员以及提供资源的个人的在线调查。调查结果这些资源具有相当大的影响力,从苏格兰各地索取了超过12,555份印刷品。这些材料被认为是相关和有用的,帮助个人谈论困难,并意识到其他人正面临着类似的挑战。独创性/价值研究结果强调了指导自助资源的潜在长期价值,这些资源可以通过家庭成员和社会关怀机构的推广来帮助促进福祉。
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引用次数: 4
Access to and use of health and social care services for people with learning disabilities during COVID-19: a longitudinal study COVID-19期间学习障碍者获得和使用卫生和社会护理服务的情况:一项纵向研究
IF 0.6 Q4 EDUCATION, SPECIAL Pub Date : 2022-01-24 DOI: 10.1108/tldr-12-2021-0038
Samantha Flynn, Chris Hatton, Richard P. Hastings, Nikita Hayden, Sue Caton, Pauline Heslop, Andrew Jahoda, Stuart Todd, Edward Oloidi, Stephen Beyer, Peter Mulhall, Laurence Taggart

Purpose

This paper aims to present data about access to and use of health and social care services by adults with learning disabilities during the COVID-19 pandemic in England, Northern Ireland, Scotland and Wales.

Design/methodology/approach

Data were collected in three waves between December 2020 and September 2021 and concerned the use of health and social care services during the COVID-19 pandemic. Data were collected at one or more time-points directly from 694 adults with learning disabilities and through separate proxy reports by family carers and paid support staff of another 447 adults with learning disabilities.

Findings

Many people with learning disabilities who reported regularly accessing services/supports pre-pandemic were not receiving them during the timeframe of this study. There were indications of increasing access to some services and supports between Wave 2 and 3, but this was not universal.

Practical implications

People in Cohort 2, who were likely to have severe/profound learning disabilities, were less frequently reported to access online community activities than people in Cohort 1, which is likely to exacerbate existing social isolation for this cohort and their family carers. Service providers should seek to ensure equitable access to services and activities for all people with learning disabilities in the event of future lockdowns or pandemics.

Originality/value

This is the largest longitudinal study about the impact of the COVID-19 pandemic on health and social care services for adults with learning disabilities in the UK. We primarily collected data directly from adults with learning disabilities and worked with partner organisations of people with learning disabilities and family members throughout the study.

本文旨在介绍英格兰、北爱尔兰、苏格兰和威尔士在COVID-19大流行期间学习障碍成年人获得和使用卫生和社会护理服务的数据。设计/方法/方法在2020年12月至2021年9月期间分三波收集数据,涉及2019冠状病毒病大流行期间卫生和社会保健服务的使用情况。在一个或多个时间点直接从694名有学习障碍的成年人中收集数据,并通过家庭照顾者和另外447名有学习障碍的成年人的有偿支持人员的单独代理报告收集数据。许多报告在大流行前定期获得服务/支持的有学习障碍的人在本研究的时间范围内没有得到这些服务/支持。有迹象表明,在Wave 2和Wave 3之间,对某些服务和支持的访问有所增加,但这并不是普遍的。实际意义队列2中可能有严重/深度学习障碍的人比队列1中的人访问在线社区活动的频率更低,这可能会加剧该队列及其家庭照顾者现有的社会孤立。服务提供者应努力确保在未来发生封锁或大流行的情况下,所有学习障碍者都能公平地获得服务和活动。这是关于COVID-19大流行对英国有学习障碍的成年人的健康和社会护理服务影响的最大的纵向研究。我们主要直接从有学习障碍的成年人那里收集数据,并在整个研究过程中与有学习障碍的人的伙伴组织和家庭成员合作。
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引用次数: 0
Commentary on “Adapted guided self-help booklets for supporting the wellbeing of people with intellectual disabilities during the COVID-19 pandemic” 关于“2019冠状病毒病大流行期间支持智力残疾人福祉的改编自助指南小册子”的评论
IF 0.6 Q4 EDUCATION, SPECIAL Pub Date : 2022-01-21 DOI: 10.1108/tldr-12-2021-0037
Lisa Richardson

Purpose

The purpose of this paper is to provide a commentary on “Adapted guided self-help booklets for supporting the wellbeing of people with intellectual disabilities during the COVID-19 pandemic” (Jahoda et al.).

Design/methodology/approach

This paper considers health and wellbeing for people with intellectual disabilities in the context of public health interventions and public health research.

Findings

Consideration is given to the evidence base for self-management, self-help and behavioural change interventions and the need to consider systemic support for promoting the health and wellbeing of people with intellectual disabilities.

Originality/value

Guided self-help and self-management techniques have a role in the health promotion of people with intellectual disabilities. Reciprocal sharing between public health researchers and intellectual disability researchers is needed to further the research, policy and service agenda to better promote health and wellbeing for this underserved group.

本文的目的是对“2019冠状病毒病大流行期间支持智障人士福祉的改编自助指南手册”(Jahoda等人)进行评论。设计/方法/方法本文在公共卫生干预和公共卫生研究的背景下考虑智障人士的健康和福祉。研究结果考虑到自我管理、自助和行为改变干预措施的证据基础,以及考虑为促进智障人士的健康和福祉提供系统支持的必要性。独创性/价值引导自助和自我管理技术在促进智力残疾者的健康方面发挥作用。公共卫生研究人员和智障研究人员之间需要相互分享,以进一步推进研究、政策和服务议程,更好地促进这一服务不足群体的健康和福祉。
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引用次数: 0
Commentary on: “Lost in the literature”. People with intellectual disabilities who identify as trans: a narrative review 评论:“迷失在文学中”。认同为跨性别者的智障人士:叙述性回顾
IF 0.6 Q4 EDUCATION, SPECIAL Pub Date : 2021-12-31 DOI: 10.1108/tldr-11-2021-0034
Tessa-May Zirnsak
PurposeThis paper aims to discuss the barriers that people with intellectual disabilities face to come out as transgender in the context of a paucity of research with or about this group.Design/methodology/approachThe commentary and brief overview of trans participation in literature on people with intellectual disabilities presented in this paper is informed by a Queer Theory and Critical disabilities Studies approach.FindingsResearchers in this area are correct that there is insufficient literature that addressed the experiences of trans people with intellectual disabilities; however, for trans people with intellectual disabilities to be involved in research they must first be safe to self-identify and come out in their communities and services. Existing research suggests that people with intellectual disabilities may face additional barriers to self-identifying as LGTBQ, and that for those who have claimed a trans identity, it is not safe to come out.Social implicationsThere is a need for researchers and professional and lived experience experts to be engaged in policy and social research with the aim of creating safe spaces and communities for people with intellectual disabilities to explore and affirm their gender.Originality/valueThere are no published papers that redirect focus from a paucity of research into the experiences of trans people with intellectual disabilities towards addressing why trans people with intellectual disabilities may choose not to come out in a context of hostility towards transgender identity in disabilities services.
目的本文旨在讨论在缺乏对这一群体的研究的情况下,智障人士成为跨性别者所面临的障碍。设计/方法论/方法本文对跨性别参与智障人士文献的评论和简要概述采用了酷儿理论和批判性残疾研究方法。发现这一领域的研究人员是正确的,没有足够的文献来描述智力残疾跨性别者的经历;然而,对于智力残疾的跨性别者来说,要参与研究,他们首先必须安全地自我认同,并在自己的社区和服务中露面。现有研究表明,智障人士在自我认同为LGTBQ方面可能面临额外的障碍,而对于那些声称拥有跨性别身份的人来说,出柜是不安全的。社会影响需要研究人员、专业和生活经验专家参与政策和社会研究,目的是为智障人士创造安全的空间和社区,让他们探索和确认自己的性别。原创性/价值没有发表的论文将焦点从对跨性别智障人士经历的研究不足转移到解决为什么跨性别智残疾人士可能会选择不在残疾服务中对跨性别身份怀有敌意的背景下出柜。
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引用次数: 0
期刊
Tizard Learning Disability Review
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