British Journal of Learning Disabilities最新文献_第10页

Digital technology design activities—A means for promoting the digital inclusion of young adults with intellectual disabilities 数字技术设计活动——促进智障青年数字化融入的一种手段

IF 1.5 4区医学 Q3 EDUCATION, SPECIAL

British Journal of Learning Disabilities

Pub Date : 2023-02-07 DOI: 10.1111/bld.12521

Mugula Chris Safari, Sofie Wass, Elin Thygesen

Background

Information and communication technology has become an important aspect of everyday life, including community living and social participation. However, people with intellectual disabilities face several societal inequalities, including digital exclusion. Even if people with intellectual disabilities still do not have the same access as others, this group is increasingly involved in digital technology design activities. Although digital technology design activities can lead to several user gains, little is known about how such activities affect digital inclusion. Therefore, we explore whether and how participation in digital technology design activities can support the digital inclusion of young adults with intellectual disabilities.

Methods

We interviewed seven young adults with intellectual disabilities about their participation in ten digital technology design sessions. We also collected reflective notes from eight support workers who participated in the same design activities. The interviews were analysed thematically.

Findings

Thematic analysis generated four themes describing how participation in technology design activities can support the digital inclusion of people with intellectual disabilities: improving digital skills and knowledge, displaying skills and competence, increased interest in technology use, and influencing and adapting technology.

Conclusions

Participation in digital technology design activities with support workers can provide new opportunities for young adults with intellectual disabilities and can help overcome several digital activity barriers. Designers and researchers should increasingly, and actively involve people with intellectual disability in digital technology design activities as it can support and promote digital inclusion.

信息通信技术已经成为人们日常生活的一个重要方面，包括社区生活和社会参与。然而，智障人士面临着一些社会不平等，包括数字排斥。即使智障人士仍然没有像其他人一样获得同样的机会，这个群体也越来越多地参与到数字技术设计活动中。虽然数字技术设计活动可以带来一些用户收益，但人们对这些活动如何影响数字包容知之甚少。因此，我们探讨参与数字技术设计活动是否以及如何支持智障青年的数字包容。方法对7名智障青年在10次数字技术设计会议中的参与情况进行了访谈。我们还收集了参与相同设计活动的8名支持人员的反思笔记。对访谈进行了主题分析。专题分析产生了四个主题，描述了参与技术设计活动如何能够支持智障人士的数字化融入:提高数字技能和知识、展示技能和能力、提高对技术使用的兴趣，以及影响和适应技术。与支持工作者一起参与数字技术设计活动可以为智力残疾的年轻人提供新的机会，并有助于克服一些数字活动障碍。设计师和研究人员应该越来越多地、积极地让智障人士参与数字技术设计活动，因为这可以支持和促进数字包容。

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引用次数: 1

Internet activities and social and community participation among young people with learning disabilities 有学习障碍的年轻人的互联网活动和社会和社区参与

IF 1.5 4区医学 Q3 EDUCATION, SPECIAL

British Journal of Learning Disabilities

Pub Date : 2023-02-02 DOI: 10.1111/bld.12519

Kristin Alfredsson Ågren, Helena Hemmingsson, Anette Kjellberg

Background

A digital lag has been reported on access to the internet and performing internet activities for young people with learning disabilities in everyday life.

Aim

The aim of this study is to explore environmental opportunities and challenges when performing internet activities and how internet use influences social and community participation for young people with learning disabilities from the perspectives of the target group.

Methods

An inductive design was applied, with focused observations and follow-up interviews of 15 internet-using young persons with learning disabilities in their everyday settings. The data was analysed interpretatively using open coding.

Findings

The environment offered both opportunities and challenges in terms of the design of digital devices and digital support. Support from peers was often preferred. All participants performed internet activities related to social participation although not all used social media. Searching for information was performed, however, finding the information or understanding it was challenging and led to restricted participation in the community.

Conclusion

More examples of internet use positively influencing social participation were found, contrary to community participation. It is indicated that concrete learning situations when using the internet for social participation were more adapted to the participants and promoted this type of participation, contrary to situations of internet use influencing community participation.

据报道，有学习障碍的青少年在日常生活中使用互联网和进行互联网活动方面存在数字滞后。目的本研究的目的是从目标群体的角度探讨学习障碍青少年在进行网络活动时所面临的环境机遇和挑战，以及网络使用如何影响他们的社会和社区参与。方法采用归纳设计，对15名学习障碍青少年在日常环境中使用互联网进行集中观察和随访访谈。使用开放编码对数据进行解释性分析。在数字设备的设计和数字支持方面，环境提供了机遇和挑战。来自同伴的支持往往是首选。尽管并非所有参与者都使用社交媒体，但所有参与者都进行了与社会参与相关的互联网活动。然而，进行信息搜索，查找信息或理解信息是具有挑战性的，并导致对社区的参与受到限制。结论网络使用对社会参与的正向影响较多，而对社区参与的正向影响较少。研究表明，使用互联网进行社会参与时的具体学习情境更适合于参与者，并促进了这种类型的参与，而与使用互联网影响社区参与的情境相反。

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引用次数: 1

The joy of knowing pete: Much was said, yet no words were spoken, By Hazel Morgan. YouCaxton Publications. 2022. 120 pages. 认识皮特的快乐:说了很多，却没有说出口。YouCaxton出版社，2022。120页。

IF 1.5 4区医学 Q3 EDUCATION, SPECIAL

British Journal of Learning Disabilities

Pub Date : 2023-01-31 DOI: 10.1111/bld.12520

Catherine de Haas

引用次数: 0

Lived experience research in learning disabilities: The understanding inequalities project from a service user's perspective 学习障碍的生活体验研究：从服务用户的角度理解不平等项目

IF 1.5 4区医学 Q3 EDUCATION, SPECIAL

British Journal of Learning Disabilities

Pub Date : 2023-01-30 DOI: 10.1111/bld.12518

Ben Gray, Tom Kerridge

Background

People with learning disabilities are often left behind and ostracised in life, education, employment and in research. This article describes the importance and value that people with learning disabilities can bring when participating in co-production and lived experience research. The article reports on the inequalities and barriers that people living with learning disabilities have in accessing health and social care services and hospitals and makes recommendations for improving services and people's experiences of services. The intertwining of subject (inequalities and barriers of access) and process (lived experience research and co-production) leads to more comprehensive knowledge and understanding of learning disabilities.

Methods

Co-production events were held with people with learning disabilities, facilitated by the co-author (Tom Kerridge). Tom and a service user researcher (Ben Gray) with Asperger's syndrome and schizophrenia thematised transcripts and made recommendations, in Ben's case with the insight of lived experience of learning disabilities and mental health problems.

Findings

A series of recommendations are made based on the insight of a lived experience perspective. For example: to have a grass roots learning disabilities champion, lived experience peer mentors and supporters, training via a film made by people with learning disabilities, the involvement of Learning Disabilities Research Ambassadors to conduct phase two of the research as well as other recommendations.

Conclusions

Lived experience research and co-production are at the heart and centre of contemporary research in health and social care. Participation can change feelings of exclusion and stigma into feelings of being valued, accepted and being able to make a difference.

有学习障碍的人在生活、教育、就业和研究中往往被抛在后面并受到排斥。本文描述了学习障碍人士在参与合作制作和生活体验研究时所能带来的重要性和价值。这篇文章报告了有学习障碍的人在获得保健和社会护理服务和医院方面遇到的不平等和障碍，并就改善服务和人们的服务体验提出了建议。主题(不平等和获取障碍)和进程(生活经验研究和合作生产)相互交织，导致对学习障碍的更全面的认识和理解。方法在作者Tom Kerridge的协助下，与有学习障碍的人一起举办联合制作活动。汤姆和一位患有阿斯伯格综合症和精神分裂症的服务用户研究员(本·格雷)对成绩单进行了主题化研究，并提出了建议，在本的案例中，他对学习障碍和精神健康问题的生活经验有了深刻的认识。基于生活经验视角的洞察，提出了一系列建议。例如:有一个基层的学习障碍倡导者，有生活经验的同伴导师和支持者，通过学习障碍人士制作的电影进行培训，学习障碍研究大使参与进行第二阶段的研究，以及其他建议。生活经验研究和共同生产是当代卫生和社会保健研究的核心和中心。参与可以将被排斥和污名化的感觉转变为被重视、被接受和能够有所作为的感觉。

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引用次数: 0

In response to ‘“Now that I'm connected this isn't social isolation, this is engaging with people”: Staying connected during the COVID-19 pandemic’ (Natasha A. Spassiani, Mojca Becaj, Clare Miller, Andrew Hiddleston, Aaron Hume, Stephan Tait) 针对“现在我有了联系，这不是社交隔离，而是与人交往”：在2019冠状病毒病大流行期间保持联系（Natasha A.Spassiani、Mojca Becaj、Clare Miller、Andrew Hiddleston、Aaron Hume、Stephan Tait）

IF 1.5 4区医学 Q3 EDUCATION, SPECIAL

British Journal of Learning Disabilities

Pub Date : 2023-01-05 DOI: 10.1111/bld.12515

Nathaniel Lawford, Danielle Garratt, Noelle McCormack

<p>Danielle Garratt is a Learning Disability Voices Network Project worker for Brighton and Hove Speak Out. Speak Out is an independent charity that makes sure people with learning disabilities can speak up and take action about things that matter to them. During the pandemic Danielle discovered a big interest in research. She started up an interview series on YouTube called ‘Speak Out with Danielle’. She interviewed, filmed and edited the recordings by herself. She interviewed many different people including those who have a learning disability and the head of Learning Disability England. She then got asked to help with ‘50 Years of speaking up in England—Towards an important history’ (Walmsley, Davies & Garratt, 2022). Through Speak Out Danielle also worked with Noelle, on a project called ‘Covid Stories from the learning disability community’, where she continued to be able to interview and capture people's stories and video edit. As a result of doing this project an opportunity come up to write this response. Danielle and Noelle both wanted to work on it and Danielle thought that Nathaniel would make a great third person to help us create a response to our chosen article.</p><p>Nathaniel Lawford is the Inclusion and Projects Director of Grace Eyre, as well as a member of Brighton and Hove Speak Out's ‘Being heard in Government’ group. Nathaniel is deeply passionate about understanding and supporting the voices of humanity in the many diverse forms that exist, and is currently focused through work and volunteering on the inclusion and ownership of persons with learning disabilities and/or Autism. Nathaniel also has Autism as well as active PTSD. Nathaniel found the article most insightful and inspiring, in parts speaking to his lived experience and understanding gained from others, as well as challenging assumptions, especially around the formation of relationships through digital inclusion. A massive thank you to all involved in the research of the article.</p><p>Noelle McCormack is a visiting research fellow and member of the Social History of Learning Disability research group based at the Open University. Her interests include life story work and creative research methods. She has recently worked with Brighton and Hove Speak Out, on a project called ‘Covid Stories from the learning disability community’ which recorded experiences of local people during the pandemic.</p><p>We met three times to discuss our thoughts about the article. At our first meeting we had a read through and were each drawn to different parts of the research. Danielle wanted to respond to leadership and digital inclusion, Nathaniel was interested in aspects of relationships and online safety, and Noelle wanted to find out more about the nuts and bolts of the research methods. We wrote up and emailed each other our first drafts. At our second meeting we read our responses to each other. While each of us was reading aloud we noticed changes we wanted to make, went aw

丹妮尔·加勒特(Danielle Garratt)是Brighton and Hove Speak Out学习障碍之声网络项目的工作人员。“说出来”是一个独立的慈善机构，它确保有学习障碍的人能够就他们关心的事情大声疾呼并采取行动。在流感大流行期间，丹妮尔对研究产生了浓厚的兴趣。她在YouTube上开始了一个名为“和丹妮尔说出来”的采访系列。她自己采访、拍摄和编辑这些录音。她采访了许多不同的人，包括那些有学习障碍的人以及英国学习障碍协会的负责人。然后，她被邀请帮助完成《在英格兰直言不讳的50年——走向一段重要的历史》(沃姆斯利，戴维斯&;Garratt, 2022)。通过“说出来”，丹妮尔还与诺埃尔合作了一个名为“来自学习障碍社区的Covid故事”的项目，在那里她继续能够采访和捕捉人们的故事和视频编辑。做这个项目的结果是一个机会来写这个回应。丹妮尔和诺埃尔都想写这篇文章，丹妮尔认为纳撒尼尔会是一个很好的第三人，可以帮助我们对我们选择的文章做出回应。纳撒尼尔·劳福德(Nathaniel Lawford)是格蕾丝·爱(Grace Eyre)的包容和项目总监，也是布莱顿和霍夫发声组织“在政府中被倾听”小组的成员。纳撒尼尔非常热衷于理解和支持人类以多种不同形式存在的声音，目前通过工作和志愿服务专注于学习障碍和/或自闭症患者的包容和所有权。纳撒尼尔还患有自闭症和活动性创伤后应激障碍。纳撒尼尔认为这篇文章极具洞察力和启发性，部分内容涉及他的生活经历和从他人那里获得的理解，以及挑战假设，特别是关于通过数字包容形成关系的假设。非常感谢所有参与这篇文章研究的人。诺埃尔·麦科马克(Noelle McCormack)是开放大学学习障碍社会史研究小组的访问研究员和成员。她的兴趣包括生活故事工作和创造性研究方法。她最近与布莱顿和霍夫合作，开展了一个名为“学习障碍社区的Covid故事”的项目，记录了当地人在大流行期间的经历。我们见了三次面，讨论我们对这篇文章的看法。在我们的第一次会议上，我们通读了一遍，每个人都被研究的不同部分所吸引。丹妮尔想对领导力和数字包容做出回应，纳撒尼尔对人际关系和网络安全方面感兴趣，诺埃尔想了解更多关于研究方法的具体细节。我们写完初稿，用电子邮件发给对方。在第二次见面时，我们宣读了彼此的答复。当我们每个人都大声朗读时，我们注意到我们想要做的改变，然后离开并重新起草。在第三次会议上，我们再次修改了我们的工作，并就我们希望优先处理的问题达成一致。我们把我们的联合回复发给了简·沃姆斯利和莉兹·蒂利，让他们在我们与作者进行在线会议之前转发给他们。我们安排了与作者Natasha Spassiani、Mojca Becaj、Aaron Hume和Stephan Tait的Zoom会议，讨论了他们对我们问题的回答。在下面的文章中，我们以原始论文的引用开始每个部分，然后是我们对作者的问题，然后是我们在Zoom会议上的讨论。丹妮尔第一眼看到这篇论文时，觉得很容易理解。丹妮尔与有学习障碍的人一起工作，她知道这场大流行对他们来说有多艰难。她希望这篇文章能提供一些信息，说明该组织如何帮助那些与数字隔绝的人，以及如何与数字联系在一起的人。“说出来”设立了一条帮助热线，每周给人们打电话，了解他们的情况。丹妮尔很喜欢读到基层残疾组织如何让智障/发展性残疾人士担任领导角色，并举办会议。她向作者提出的问题是，他们如何让有智力/发育障碍的人成为积极的领导者。丹妮尔把她的部分回应集中在关键点上，“自从上网以来，更多有智力/发育障碍的成年人承担了积极的领导角色，并感到组织变成了一个社区”。第一次读这部分的时候，这是一个非常积极向上的部分，但也有一些事情打动了她。“看到组织适应得如此之好，并能够继续提供服务，让成员们感到共同的自豪感，因为他们在组织的成功中发挥了积极的作用。” 问:你能解释一下这些成员所扮演的积极角色吗?亚伦告诉我们，这个组织是由成员领导的，他们肩并肩地计划活动，然后主持和领导。他们把活动的新想法告诉成员，然后付诸实践，例如，一个“谋杀之谜”活动。为了这次活动，Aaron和另一个成员一起策划、编写和表演了这次活动，这是一个“互动、有趣和愉快的”活动。“在我们的研究中，30名有智力或发育障碍的成员创建并领导了所有的Facebook在线活动。问题:会员们有多少支持来领导Facebook的在线活动?Stephan说，会员可以通过各种方式获得支持，包括指导、指导、教程库和信使电话。该组织的大使和协调员与成员合作，为他们如何领导和参加在线活动做好准备。他们看到，随着时间的推移，对成员的信心日益增强，所需的支持也越来越少。他们采用了“试错法”。有人第一次领导一个活动，他们得到了大使的支持，这给了他们信心。每个人都被鼓励和支持去尝试。Stephan发现，当他教一个成员时，他们会继续教另一个成员，这导致了滚雪球效应。他告诉我们，唯一的失败是“根本不去尝试，每个人都被鼓励去尝试，每个人都明白失败是可以接受的”。每次会议和活动都有一名协调员出席。“该组织创造了机会，并创造了一个平台，允许想法集思广益，并作为一个团队发展，在这里，成员们感到受到启发，为内容开发做出贡献。”问题:有什么平台可以让会员们写下自己的想法并进行头脑风暴?教他们如何使用它很难吗?亚伦告诉我们，他们主要使用Zoom开会和私人Facebook小组，让成员发布信息和现场活动。Zoom是由该组织提供的，但Facebook messenger是供成员保持联系并为该组织创建内容的。他们制定了一个时间表，列出了每周聚会的活动时间，一个名为“周一魔法”的1小时会议，在会上提出想法，成员们自愿主持。“我们的研究结果支持了过去的研究，并证明了残疾人组织在教育和支持智力/发育障碍人士保持数字化融入方面是多么有效。”问题:这是否可以解释为教人们使用互联网很难，如果他们没有互联网，那么你如何教他们?我们从moja那里听说，世卫组织从来没有打算教人们技术，这是在疫情期间试图保持人们联系的副产品。该组织60%的员工都是有实际经验的人。斯蒂芬制作了一系列在线教程，该组织的大使们支持人们，直到他们有信心。总的来说，Danielle认为本文的讨论部分有很多内容。她想要了解更多信息的一点是，在这一节中说，“我们的研究发现，有智力/发育障碍的成年人能够有意义地参与在线活动，并通过电脑屏幕感受到社会联系。”问题:丹妮尔想知道有多少人没有在网上互动。Mojca告诉我们，在12个月结束时，70%的会员没有参与在线活动，这是他们非常担心的。然而，就参与和接触而言，这是它们历史上最成功的年份之一。他们的论文的重点是30%的人参加了在线活动，讲述了一个积极的故事，参与人数创历史新高。丹妮尔发现她的问题的答案既有用又有趣。她很高兴地发现，该组织如何共同努力，鼓励每个人都参与到Facebook在线活动的规划和主持中来，每个人都受到鼓励和支持。她对在线教程的内容印象深刻，并将在未来的工作中使用它们。第2a部分标题为“增加参与活动的机会”，Nathaniel发现了一个最令人惊讶的内容，特别是考虑到“有智力/发育障碍的成年人能够在网上建立积极的关系……这与亲自见人有同样的好处”。这挑战了他对人际关系形成的理解。虽然纳撒

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引用次数: 0

Use of technology by older adults with an intellectual disability in Ireland to support health, well-being and social inclusion during the COVID-19 pandemic 在2019冠状病毒病大流行期间，爱尔兰智障老年人使用技术支持健康、福祉和社会包容

IF 1.5 4区医学 Q3 EDUCATION, SPECIAL

British Journal of Learning Disabilities

Pub Date : 2022-11-30 DOI: 10.1111/bld.12514

Darren McCausland, Mary McCarron, Philip McCallion

Background

Before COVID-19, people with intellectual disabilities were digitally excluded, facing difficulties accessing and using technology. The pandemic outbreak closed down many in-person services and supports for this population.

Methods

This study examined changes in technology use to support the healthcare and social connections of older adults with intellectual disability in Ireland (n = 682) during COVID-19. Decision tree analyses explored factors associated with using technology for health and social connection; and to explore relationships between technology use and subjective outcomes of stress/anxiety and of positives during this period.

Findings

Technology use for healthcare and social connection increased during COVID-19, but not enough to make up for the loss of in-person care/connection. Residence type was associated with increased use of technology for healthcare utilisation, with the highest rates among community group home residents and the lowest among those in independent/family settings. Increased technology use to speak with both family and friends was associated with prior digital skills and digital access. Increased technology use was significantly associated with both positive and negative experiences during the pandemic.

Conclusions

The COVID-19 pandemic offered an opportunity for increased digital connection for older adults with intellectual disabilities, but not all benefitted. Those with prior skills, available supports, and the greatest need to connect were more likely to enhance their use of technology. The complexity of the COVID-19 period, including the general impact on mental health and well-being, means that the role technology played in supporting quality of life and mitigating stress/anxiety needs further and longer-term investigation.

结论在2019冠状病毒病之前，智力残疾人士被数字排斥，面临获取和使用技术的困难。大流行疫情关闭了许多针对这一人群的面对面服务和支持。本研究调查了爱尔兰(n = 682)在COVID - 19期间支持智力残疾老年人的医疗保健和社会联系的技术使用变化。决策树分析探讨了与使用技术促进健康和社会联系有关的因素;并探讨了在此期间使用技术与压力/焦虑和积极因素的主观结果之间的关系。COVID - 19期间，用于医疗保健和社会联系的技术使用量有所增加，但不足以弥补面对面护理/联系的损失。居住类型与医疗保健技术使用的增加有关，社区团体之家居民的使用率最高，独立/家庭环境居民的使用率最低。与家人和朋友交谈时越来越多地使用技术与先前的数字技能和数字访问有关。在大流行期间，技术使用的增加与积极和消极的经历显著相关。2019冠状病毒病大流行为智力残疾老年人提供了增加数字连接的机会，但并非所有人都受益。那些拥有先验技能、可用支持和最需要联系的人更有可能提高他们对技术的使用。COVID - 19期间的复杂性，包括对心理健康和福祉的一般影响，意味着技术在支持生活质量和缓解压力/焦虑方面所发挥的作用需要进一步和长期的调查。[源自作者]

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引用次数: 2

Promoting the Health and Well-Being of People with Learning Disabilities by Pauline Heslop & Crispin Hebron (Editors). Springer 2020. ISBN 978-3-030-43487-8 (Hardcover); ISBN 978-3-030-43488-5 (eBook), hardback £49.99 PaulineHeslop和CrispinHebron（编辑）的《促进学习障碍者的健康和福祉》。Springer2020.ISBN 978‐3‐030‐43487‐8（精装本）；ISBN 978‐3‐030‐43488‐5（电子书），精装本49.99英镑

IF 1.5 4区医学 Q3 EDUCATION, SPECIAL

British Journal of Learning Disabilities

Pub Date : 2022-11-27 DOI: 10.1111/bld.12513

Elspeth Clark

引用次数: 0

Editorial: What a year! 社论:这是多么美好的一年啊!

IF 1.5 4区医学 Q3 EDUCATION, SPECIAL

British Journal of Learning Disabilities

Pub Date : 2022-11-13 DOI: 10.1111/bld.12509

Melanie Nind

For many people with learning disabilities, as for all of us, this has been an unsettling year. When we all wanted a return to normal lives after the Covid-19 lockdowns, uncertainties and inequalities have prevailed. When there are wars, and pandemics, and cost of living crises, people suffer. This has been the context for the journal and those writing for it, doing peer review, making editorial decisions, and most critically perhaps for the people the journal is about. It feels important to acknowledge this.

In my last editorial I promised an update on the outcomes of the research about how people with learning disabilities might contribute to reviewing papers. The jury of people with learning disabilities who mulled over this issue aided by expert informants, reached consensus about why they would like to be involved in an inclusive peer review process. Their reasons focused on the opportunity this provides to discuss things that are important to them, to learn, be heard, and to feel good about being treated well. They thought that their involvement in peer review should be done in groups rather than as individuals. Also important to them was that the process should be unrushed and use accessible formats to review papers about things they know and that are relevant to their lives. In moving forward on this agenda we will be introducing a series of small pilot projects.

Respondents so far have often said that all of these are important as well as indicating what their preferences are and why. Before the decision is made and the call appears for editors to take forward that 2024 special issue, we have the special issue on digital inclusion of people with learning disabilities to look forward to in 2023.

As well as being a difficult year in many ways it has also been a productive year for the journal. The volume and quality of the papers we receive continues to rise. Having special issues and a lot of interest in the journal means both that authors may have to wait longer before their paper moves from being published online Early View to being allocated to an issue, and that the issues get bigger with more papers each time. Hence, we end the year with a big issue, rich in papers covering a range of the journal's core themes. There is a lot here for readers concerned with the heath of people with learning disabilities. The journal's stance of standing with people with learning disabilities is evident in papers on researching together and sustaining relationships. And the fundamentals of life are addressed: eating, mothering, having friendships, staying well, ageing. With so many papers I am not going to outline the contents of this issue in more detail. However I am going to end with a big thank you to everyone who has contributed to the issue, to the work this year, to the consultation, and to making this a journal we all want to be associated with.

对于许多有学习障碍的人来说，就像我们所有人一样，这是令人不安的一年。当我们都希望在新冠肺炎疫情后恢复正常生活时，不确定性和不平等却占据了上风。当发生战争、流行病和生活成本危机时，人们就会受苦。这是杂志和那些为它写作的人的背景，做同行评议，做编辑决定，最重要的是，这可能是杂志所关注的人的背景。承认这一点很重要。在我的上一篇社论中，我承诺将更新有关学习障碍人士可能对论文评审做出贡献的研究结果。由学习障碍患者组成的陪审团在专家的帮助下仔细考虑了这个问题，就他们为什么希望参与一个包容性的同行评审过程达成了共识。他们的理由集中在这提供了一个机会来讨论对他们来说重要的事情，学习，被倾听，并为被善待而感到高兴。他们认为参与同行评议应该以小组的形式进行，而不是以个人的形式。对他们来说同样重要的是，这个过程应该不慌不忙，并使用可访问的格式来审查他们所知道的和与他们生活相关的论文。在推进这一议程的过程中，我们将推出一系列小型试点项目。到目前为止，受访者经常说所有这些都很重要，并指出他们的偏好是什么以及为什么。在做出决定并呼吁编辑们将2024年的特刊提前出版之前，我们将在2023年期待一期关于学习障碍人士的数字包容的特刊。从很多方面来说，这是艰难的一年，也是《华尔街日报》收获颇丰的一年。我们收到的论文的数量和质量都在不断提高。如果期刊有特刊，并且有很多人对期刊感兴趣，这意味着作者可能需要等待更长的时间，才能将论文从在线早期视图发表到分配到一期杂志上，而且每次发表的论文越多，一期杂志就越大。因此，我们以一个大问题结束了这一年，丰富的论文涵盖了该杂志的一系列核心主题。这里有很多读者关心有学习障碍的人的健康。该杂志与有学习障碍的人站在一起的立场在关于共同研究和维持关系的论文中很明显。而生活的基本要素也得到了解决:饮食、养育子女、交友、健康、衰老。由于论文如此之多，我不打算更详细地概述这一问题的内容。最后，我要对所有为这个问题做出贡献的人，对今年的工作，对咨询做出贡献的人，对让这本杂志成为我们都希望与之联系的杂志做出贡献的人，表示衷心的感谢。

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引用次数: 0

“Please send me the link for tomorrow, María” human-rights based participatory research with people with learning disabilities via Zoom “请给我明天的链接，玛丽亚”通过Zoom对学习障碍者进行的基于人权的参与性研究

IF 1.5 4区医学 Q3 EDUCATION, SPECIAL

British Journal of Learning Disabilities

Pub Date : 2022-11-06 DOI: 10.1111/bld.12511

María Gómez-Carrillo de Castro, Adela Palazuelos, Adrián Corona, Ángela Sánchez, Gema Alises, Marta Sancho, Paola Cauja, Víctor Sanz

Background

This paper describes the experience of conducting a co-researched project with people with learning disabilities in Madrid, Spain, during the COVID pandemic and lockdown. I discuss the advantages and limitations of working online and challenges encountered while coordinating and facilitating the research.

Methods

Our research project was on the impact of COVID on the lives of people with learning disabilities, which the eight co-researchers chose. As part of my PhD, I offered my services as researcher to work together with persons with learning disabilities. Eight people took up my offer. We worked together from January 2021 to March 2022 virtually and I recorded this experience. I have written the paper, but as part of my co-researcher agreement, I have shared my reflections and work with my co-researchers, and we have co-written a section to share our findings.

Findings

In this paper, I discuss the advantages and limitations of working online, challenges I encountered while coordinating and facilitating the research and the work together. Remote work enabled the group to work on a biweekly basis and with members from different parts of Madrid. It saved people time and effort getting around town, yet we had to introduce express times and spaces to socialise and create a working relationship that is less natural than during in-person interactions and breaks. During our fieldwork, we found that the pandemic had spurred the access to digital devices and programmes, but people may still be reliant on their environment, carers or supporters to facilitate it. I included a section written with my co-researchers, in which we reflect together on the experience of working online and how we reached out to their peers during our fieldwork. We identified limitations due to our online research methodology such as lack of owning a digital device, the difficulties having access to a private space from which to connect online and the joy of meeting other people to exchange experiences.

Conclusion

Human rights based participatory research can be done online. There are different ways of overcoming barriers to participation. However, there are people with no access to the internet or without digital skills that are being excluded and we must ensure that we reach out to them as well.

背景方法研究结果结论本文描述了在新冠肺炎疫情和封锁期间，在西班牙马德里与学习障碍者进行联合研究项目的经验。我讨论了在线工作的优势和局限性，以及在协调和促进研究时遇到的挑战。我们的研究项目是关于新冠肺炎对学习障碍者生活的影响，这是八位联合研究人员选择的。作为博士学位的一部分，我以研究员的身份提供服务，与有学习障碍的人合作。八个人接受了我的提议。我们从2021年1月到2022年3月进行了虚拟合作，我记录了这段经历。我已经写了这篇论文，但作为我的共同研究者协议的一部分，我与共同研究者分享了我的思考和工作，我们共同写了一节来分享我们的发现。在这篇论文中，我讨论了在线工作的优势和局限性，以及我在协调和促进研究和共同工作时遇到的挑战。远程工作使该小组能够每两周与来自马德里不同地区的成员一起工作。它节省了人们在城里四处走动的时间和精力，但我们必须引入快速的社交时间和空间，并创造一种不如面对面交流和休息时自然的工作关系。在我们的实地调查中，我们发现疫情刺激了人们使用数字设备和程序，但人们可能仍然依赖他们的环境、护理人员或支持者来促进这一点。我与我的合作研究人员一起写了一节，在这一节中，我们一起反思了在线工作的经历，以及我们在实地调查中如何与他们的同行联系。我们发现了由于我们的在线研究方法而产生的局限性，例如缺乏数字设备，难以进入私人空间进行在线连接，以及与他人见面交流经验的乐趣。基于人权的参与性研究可以在网上进行。克服参与障碍的方法多种多样。然而，有些无法上网或没有数字技能的人被排除在外，我们必须确保我们也能接触到他们。[来自作者]

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引用次数: 1

The perceived helpfulness of structural family therapy in caring for Hong Kong Chinese families of an adolescent with intellectual disabilities: A qualitative inquiry 结构性家庭治疗对香港中国智障青少年家庭护理的帮助：定性调查

IF 1.5 4区医学 Q3 EDUCATION, SPECIAL

British Journal of Learning Disabilities

Pub Date : 2022-11-03 DOI: 10.1111/bld.12510

Julia W. K. Lo, Joyce L. C. Ma

Background

Previous literature pinpointed the limitations of behavioural treatment in helping families of people with intellectual disabilities to transit lifecycle adjustment and suggested the contributions of systemic intervention made to this population.

Methods

This study aimed to explore the applicability of structural family therapy to helping Hong Kong Chinese families of adolescents with intellectual disabilities from the perspective of family members. Nine members from four families of adolescents with intellectual disabilities were recruited. Family or individual interviews were conducted. A thematic analysis was adopted for data analysis.

Findings

The families experienced two major changes after the therapy, that is, sharing the care responsibilities among family members and using more open communication styles in the family. Structural family therapy was found to be helpful in mediating family problems and promoting the active involvement of adolescents with intellectual disabilities in family interactions. However, the family participants expected clear guidance for the future development of adolescents with intellectual disabilities in a family treatment process.

Conclusions

Structural family therapy can be a promising approach to working with Chinese families of adolescents with intellectual disabilities.

背景先前的文献指出了行为治疗在帮助智障家庭度过生命周期调整方面的局限性，并提出了系统干预对这一人群的贡献。方法本研究旨在从家庭成员的角度探讨结构性家庭治疗在帮助香港华裔智障青少年家庭中的适用性。研究招募了来自四个智障青少年家庭的九名成员。进行了家庭或个人访谈。数据分析采用专题分析。结果治疗后家庭发生了两大变化，即家庭成员之间分担照顾责任和家庭沟通方式更加开放。结构性家庭治疗有助于调解家庭问题，促进智障青少年积极参与家庭互动。然而，家庭参与者希望在家庭治疗过程中为智障青少年的未来发展提供明确的指导。结论结构家庭治疗在中国智力障碍青少年家庭中具有较好的应用前景。

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引用次数: 1