British Journal of Learning Disabilities最新文献_第6页

A study of the clinical and demographic characteristics of adults with an intellectual disability who remain in learning disability assessment and treatment units despite being clinically ready for discharge 成人智力残疾的临床和人口学特征的研究，他们仍然在学习障碍评估和治疗单位，尽管临床准备出院

IF 1.5 4区医学 Q3 EDUCATION, SPECIAL

British Journal of Learning Disabilities

Pub Date : 2023-11-20 DOI: 10.1111/bld.12562

Jonathan Williams, Fiona Pender, Saman Shahzad, Ceri Woodrow, Rimsha Dar, Matthew Humphreys, Joanne Evans-Stone, Sharleen Nall-Evans, Peter Wilson

Background

This study investigated differences in the clinical and demographic characteristics of individuals with intellectual disabilities delayed in assessment and treatment hospitals versus individuals who were not delayed. The study further investigated the clinical outcomes of the individuals whose discharge from the hospital was delayed.

Method

This was a cohort study using secondary data collected from patient records. Variables included age, ethnicity, levels of deprivation, areas of origin, diagnoses, and the provision of a care and treatment review. A comparison was made between individuals who became delayed despite being clinically ready for discharge and those who were discharged on time.

Findings

Individuals with severe intellectual disabilities were more likely to experience delayed discharge from hospital (p = 0.001). Similarly, people who were admitted to hospitals away from their home areas were also more likely to experience delayed discharge (p < 0.001). There were no significant differences between the delayed and nondelayed groups for other factors such as age, deprivation or ethnicity. Individuals who experienced a delay in discharge did not experience an increased rate of adverse incidents compared to the period of active treatment and clinical improvements were maintained during the period of delay. There were low rates of completion of care and treatment reviews before admission, although people who were delayed were more likely to have received a review during admission (78.8% vs. 27.1%).

Conclusion

It is important for clinicians and service development leads to be aware that people who are admitted away from their home area and people with severe intellectual disabilities may be at higher risk of experiencing significantly delayed discharge from the hospital. More broadly, many people remained in hospital for a substantial length of time after being assessed as clinically ready for discharge. Due to the low rates of completion before admission, the expansion of community-based care and treatment reviews should also be explored. While people did not suffer increased rates of adverse incidents during their extended stay, their liberty was still restricted, hence there should be a focus on effective community provision. The current model of relying on the willingness of independent providers to support the care of complex individuals requires significant reform.

本研究调查了在评估和治疗医院延迟的智力残疾个体与未延迟的个体在临床和人口学特征方面的差异。本研究进一步调查了延迟出院个体的临床结果。

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引用次数: 0

The lived experience of immigrant parents of disabled adolescents and young adults transitioning into adulthood: A narrative inquiry 残疾青少年和年轻人的移民父母向成年过渡的生活经验:一种叙事探究

IF 1.5 4区医学 Q3 EDUCATION, SPECIAL

British Journal of Learning Disabilities

Pub Date : 2023-11-16 DOI: 10.1111/bld.12563

Dominic Andrew Nyikach, Ketil Lenert Hansen

Background

Immigrant parents' perspectives on raising adolescents and young adults with intellectual disabilities during the transition to adulthood are the focus of this study. Disabled children demand more care and support as they mature and transition to adulthood. This increased care demand places significant stress on parents' wellbeing and participation in social and economic activities.

Methods

Qualitative interviews were undertaken with purposively sampled immigrant parents of adolescents and young adults with intellectual disabilities transitioning into adulthood. The study used inductive thematic analysis to identify common themes across the data set.

Findings

The birth of their disabled child marked a new beginning in a family's life, characterised first by shock and later by acceptance. Informants experienced challenges associated with language and information access, reduced service, social isolation, skewed gender roles and worrying about their children's future.

Conclusions

The intersection between migration and disability can aggravate the care burden. Knowledge about parents' experiences is crucial for designing rehabilitation programmes, promoting wellbeing and bridging gaps between services recommended by service providers and the actual needs of the family and child.

本研究的重点是移民父母对智障青少年和年轻成人的抚养。残疾儿童在成熟和向成年过渡的过程中需要更多的照顾和支持。这种增加的护理需求给父母的福祉和参与社会和经济活动带来了巨大的压力。

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引用次数: 0

Moving house: How much choice do people with learning disabilities have about where they live? 搬家：有学习障碍的人对居住地有多少选择权？

IF 1.5 4区医学 Q3 EDUCATION, SPECIAL

British Journal of Learning Disabilities

Pub Date : 2023-11-03 DOI: 10.1111/bld.12558

Lauren Blood, Francesca Ribenfors, Chris Hatton, Anna Marriott

Background

People with learning disabilities have the right to choose where they live. However, evidence suggests people's choices are limited due to a shortage of housing.

Methods

200 Lives was a mixed methods research project, which evaluated supported living and residential care for people with learning disabilities in England; 107 people with learning disabilities took part, 77 from supported living and 30 from residential care.

Findings

Two-thirds of people in supported living compared to half of those in residential care chose the place they were currently living in; however, less than half of all participants looked at another property before moving to their current house. People in supported living were significantly more likely to have chosen who they lived with. Reasons for moving mainly consisted of reactive moves following an issue with the previous living situation. Many people had not considered moving in the future.

Conclusion

Findings suggest that people's choices about where to live were constrained regarding the properties on offer and who to live with. This suggests that people's housing rights were not being upheld. Support and housing providers should ensure that housing can adapt to people's changing needs and wishes over the course of their lives.

背景有学习障碍的人有权选择居住地。然而，有证据表明，由于住房短缺，他们的选择受到了限制。方法 200 生活是一个混合方法研究项目，对英格兰学习障碍人士的辅助生活和寄宿护理进行了评估；107 名学习障碍人士参与了该项目，其中 77 人来自辅助生活机构，30 人来自寄宿护理机构。研究结果三分之二的辅助生活者选择了他们目前居住的地方，而一半的寄宿护理者选择了他们目前居住的地方；然而，在所有参与者中，只有不到一半的人在搬到他们目前的房子之前看过另一处房产。接受辅助生活的人更有可能选择与谁一起居住。搬家的原因主要是在之前的居住环境出现问题后被动搬家。许多人没有考虑过将来搬家。结论调查结果表明，人们在选择居住地时，在提供的房产和居住对象方面受到了限制。这表明人们的住房权利没有得到维护。支持和住房提供者应确保住房能够适应人们一生中不断变化的需求和愿望。

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引用次数: 0

A measure to evaluate parenting interventions: Using inclusive research to modify a tool to measure change in parenting self-efficacy during the antenatal period 评估育儿干预措施的措施：利用包容性研究修改工具，以衡量产前育儿自我效能的变化

IF 1.5 4区医学 Q3 EDUCATION, SPECIAL

British Journal of Learning Disabilities

Pub Date : 2023-11-01 DOI: 10.1111/bld.12561

Athena Ip, Sally Kendall, Ali Jabeen, Scott Watkin, Anna Cox

<div> <section> <h3> Background</h3> <p>With the right support, people with learning disabilities can be ‘good enough’ parents (Coren et al., 2011; Murphy & Feldman, 2002). Parenting programmes exist to support parents and are made accessible for people with learning disabilities who are expecting a baby, but evaluation of the benefit of these interventions is poor due to a lack of accessible outcome measures (May & Harris, 2020; Wade et al., 2008). The Tool to Measure Parenting Self-Efficacy in the antenatal period (TOPSE- ante-natal) measures the impact of parenting interventions on an individual's self-efficacy during the antenatal period. This study aimed to modify the TOPSE ante-natal tool through a process of inclusive research, to support a consistent approach to evaluating parenting interventions from the perspective of parents-to-be with learning disabilities.</p> </section> <section> <h3> Methods</h3> <p>A two-phase study using interviews and discussion groups was conducted in a process of inclusive research to modify the TOPSE ante-natal tool. Phase one involved conducting eight cognitive interviews (interviews to understand how individuals process and recall information) with parents with learning disabilities. These were conducted remotely via Microsoft Teams, transcribed verbatim and analysed using content analysis (Krippendorff, 2013). Participants were recruited using snowballing techniques through the advisory groups' networks. Phase two included three discussion groups with study collaborators and advisors (<i>n</i> = 14) to assess the accessibility and acceptability of adaptations of the tool, each making further refinements for consideration.</p> </section> <section> <h3> Findings</h3> <p>Interviews and discussion groups highlighted how parents-to-be with learning disabilities experienced some of the original TOPSE-ante-natal negative statements, including negative points on a Likert scale, difficult to comprehend. Figurative statements and unfamiliar words also caused confusion, and statements focussed on the pressures of parenting were experienced as confrontational by people with learning disabilities. Statements were removed or replaced and agreed upon in discussion groups to ensure that the tool was accessible and meaningful to people with learning disabilities.</p> </section> <section> <h3> Conclusions</h3> <p>We have used a process of inclusive research to modify a self-efficacy tool for parents-to-be with learning disabilities that is freely available on the TOPSE website (https://www.topse.org.uk/site/). The nex

背景在正确的支持下，有学习障碍的人可以成为 "足够好 "的父母（Coren 等人，2011 年；Murphy & Feldman，2002 年）。现有的育儿计划可为父母提供支持，并为即将怀孕的学习障碍人士提供方便，但由于缺乏可用的结果测量方法，对这些干预措施的益处评估很差（May & Harris, 2020; Wade et al.）产前育儿自我效能测量工具（TOPSE-ante-natal）可测量产前育儿干预对个人自我效能的影响。本研究旨在通过包容性研究过程修改 TOPSE 产前工具，以支持从有学习障碍的准父母的角度评估育儿干预的一致方法。方法在包容性研究过程中，采用访谈和讨论小组的方式分两个阶段进行研究，以修改 TOPSE 产前工具。第一阶段对有学习障碍的父母进行了八次认知访谈（了解个人如何处理和回忆信息的访谈）。这些访谈通过 Microsoft Teams 远程进行，逐字记录，并使用内容分析法进行分析（Krippendorff，2013 年）。通过咨询小组的网络，采用滚雪球技术招募参与者。第二阶段包括与研究合作者和顾问（n = 14）的三个讨论小组，以评估工具改编的可访问性和可接受性，每个小组都对工具作了进一步的改进，以供考虑。研究结果访谈和讨论小组都强调了有学习障碍的准父母是如何对最初的 TOPSE-产前负面陈述（包括李克特量表中的负分）感到难以理解的。比喻性陈述和不熟悉的词语也造成了混淆，而侧重于育儿压力的陈述则被有学习障碍的人认为是对抗性的。我们删除或替换了一些语句，并在讨论小组中达成一致意见，以确保该工具对有学习障碍的人无障碍且有意义。结论我们采用包容性研究的方法，修改了针对有学习障碍的准父母的自我效能工具，该工具可在 TOPSE 网站（https://www.topse.org.uk/site/）上免费获取。下一步，我们将在未来评估学习障碍人士养育干预措施的研究中使用并验证这一工具。这将为支持学习障碍人士为人父母做好准备的从业人员应采用哪些干预措施提供知识基础。

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引用次数: 0

The effect of MultiSensory Music Drama on the interactive engagement of students with severe/profound intellectual and multiple disabilities 多感官音乐剧对重度/智力和多重残疾学生互动参与的影响

IF 1.5 4区医学 Q3 EDUCATION, SPECIAL

British Journal of Learning Disabilities

Pub Date : 2023-10-19 DOI: 10.1111/bld.12559

Linn Johnels, Helena Wandin, Shakila Dada, Jenny Wilder

Background

Interactive engagement, specifically attention and initiation, are considered important skills for facilitating development and learning in students with severe/profound intellectual and multiple disabilities. Prior research has suggested that music therapy and multisensory storytelling are two promising interventions for supporting interactive engagement in this population. However, there are no known/published studies that have investigated the effect of combining relevant elements from musical interaction and multisensory storytelling for this group of students. This study aims to determine the effect of a novel educational approach—MultiSensory Music Drama (MSMD)—on the interactive engagement of students with severe/profound intellectual and multiple disabilities.

Methods

A single-case experimental design, specifically an ABAB design across three participants, was used to describe the effect of MSMD on interactive engagement when compared with a control activity. School staff members' perceptions of student interactive engagement and social validity were obtained.

Findings

Coded video observations showed significantly higher levels of interactive engagement during MSMD for all three participants when compared to the control activity. Furthermore, the ratings on the interactive engagement from school staff members improved for two of the three participants. Finally, school staff members scored the social validity and perceived educational usefulness of the MSMD as very high.

Conclusions

The findings provide initial evidence that MSMD may be effective in supporting the interactive engagement of some students with severe/profound intellectual and multiple disabilities.

背景互动参与，特别是注意力和启动，被认为是促进重度/永久性智障和多重残疾学生发展和学习的重要技能。先前的研究表明，音乐疗法和多感官讲故事是支持这类人群互动参与的两种很有前景的干预方法。然而，目前还没有已知的/已发表的研究调查了将音乐互动和多感官讲故事的相关元素结合起来对这一学生群体的影响。本研究旨在确定一种新颖的教育方法--多感官音乐剧（MSMD）--对重度/智力和多重残疾学生互动参与的影响。方法采用单例实验设计，特别是三名参与者的 ABAB 设计，来描述 MSMD 与对照活动相比对互动参与的影响。同时还了解了学校教职员工对学生互动参与度和社会有效性的看法。研究结果经编码的视频观察显示，与对照活动相比，所有三名参与者在 MSMD 活动中的互动参与度都明显更高。此外，学校教职员工对三位参与者中两位的互动参与度的评分也有所提高。最后，学校教职员工对 MSMD 的社会有效性和教育实用性给予了很高的评价。结论研究结果提供了初步证据，证明 MSMD 可有效支持部分重度/智力和多重残疾学生的互动参与。

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引用次数: 0

In response to: “It should be more outspoken and not hushed away, not like put in a dark box”: An interpretative phenomenological analysis of experiences of menopause voiced by women with learning disabilities (Katie Langer-Shapland, Stephen J. Minton, Nel Richards) 回应：“它应该更直言不讳，不要沉默，不要像被放在暗箱里一样”：对学习障碍女性更年期经历的解释性现象学分析（Katie Langer Shapland，Stephen J.Minton，Nel Richards）

IF 1.5 4区医学 Q3 EDUCATION, SPECIAL

British Journal of Learning Disabilities

Pub Date : 2023-10-16 DOI: 10.1111/bld.12557

Amanda Millear, Janice Slattery, Kelley Johnson

<p>We are three women who have all gone through menopause. We all live and work in Melbourne, Australia. Amanda and Janice are self-advocates for the rights of people with learning disabilities in Australia. They have been advocate researchers in a number of research projects over the past 20 years including studies on sexuality and relationships, women's sexual health, a history of self-advocacy and life histories of women with learning disabilities (Johnson et al., <span>2001</span>, <span>2002</span>; Traustadottir & Johnson, <span>2000</span>). Both have held official positions in self-advocacy organisations and have presented their work at conferences in both Australia and overseas. Currently, Janice is president of a self-advocacy organisation and Amanda is involved in a number of different advocacy organisations and a community radio program. Kelley is a researcher who has worked with Amanda and Janice on a number of the research projects in which they have been involved. We have written articles and book chapters and given conference papers together.</p><p>We have been colleagues and friends for many years. We met three times to review this article. At our first meeting we looked at five possible articles which we could review and chose the one which seemed most relevant to us as women. We discussed this decision at some length and some of that discussion is included in this review.</p><p>We received from the authors of the article a plain English version of it, which we found very helpful. On our second meeting, which was a full afternoon's work, we used the Plain English version as a basis for our discussions. We had all read it before we met. Kelley had also read the full article and went to it when we wanted more detailed information than that given in the Plain English version. We recorded our discussion and Kelley also made notes of it. During this discussion we identified questions we wanted to discuss with the authors, and we also discussed our responses to the article. The questions were sometimes a starting point for discussion and sometimes they developed from it. Kelley took the recording and notes home and wrote a draft of our response. She sent this to Amanda and Janice. At our third meeting, we discussed what had been written, changed some of it and prepared for our discussion with the authors. We then met on Zoom with the authors and discussed our responses.</p><p>We have organised this review as questions and our ideas and responses to each of them. Because this review was the result of a discussion between the three of us we have organised it as questions and comments rather than as separate responses from each of us though sometimes we use particular quotes from one of us. We have included in italics a summary of the responses from the writers of the article following our Zoom meeting.</p><p>We were given a choice of five articles to review and chose the one on the experiences of women with menopause because as wome

我们有三位女性都经历了更年期。我们都在澳大利亚墨尔本生活和工作。Amanda和Janice是澳大利亚学习障碍者权利的倡导者。在过去的20年里，他们一直是许多研究项目的倡导者研究人员，包括关于性和关系、女性性健康、自我倡导史以及学习障碍女性的生活史的研究（Johnson等人，20012002；Traustadottir和Johnson，2000年）。两人都曾在自我倡导组织担任官方职务，并在澳大利亚和海外的会议上介绍了他们的工作。目前，Janice是一个自我倡导组织的主席，Amanda参与了多个不同的倡导组织和一个社区广播节目。Kelley是一名研究员，曾和Amanda和Janice一起参与过许多研究项目。我们一起写了文章和书籍章节，并发表了会议论文。多年来，我们一直是同事和朋友。我们见过三次面来复习这篇文章。在我们的第一次会议上，我们看了五篇我们可以回顾的文章，并选择了一篇对我们女性来说最相关的文章。我们详细讨论了这一决定，其中一些讨论包含在本次审查中。我们从这篇文章的作者那里收到了它的纯英文版本，我们觉得它很有帮助。在我们的第二次会议上，也就是整整一个下午的工作，我们使用了简明英文本作为我们讨论的基础。我们见面之前都读过。凯利也阅读了整篇文章，当我们想要比简明英文版更详细的信息时，他就去看了。我们记录了我们的讨论，Kelley也做了笔记。在这次讨论中，我们确定了我们想与作者讨论的问题，还讨论了我们对文章的回应。这些问题有时是讨论的起点，有时又是从中发展起来的。凯利把录音和笔记带回家，并写下了我们的回答草稿。她把这个发给了阿曼达和珍妮丝。在第三次会议上，我们讨论了所写的内容，修改了其中的一些内容，并为与作者的讨论做了准备。然后，我们在Zoom上与作者会面，并讨论了我们的回应。我们将这次审查组织为问题，以及我们对每一个问题的想法和回应。由于这篇评论是我们三人讨论的结果，我们将其组织为问题和评论，而不是我们每个人的单独回应，尽管有时我们会引用其中一人的特别语录。我们在Zoom会议后用斜体字总结了文章作者的回应。我们从五篇文章中进行了选择，并选择了一篇关于更年期女性经历的文章，因为作为所有经历过更年期的女性，我们认为我们对这个话题有所了解，我们都有兴趣了解更多。我们都认为缺乏关于更年期的信息，尤其是关于学习障碍女性观点的信息。很高兴看到一篇研究人员倾听有学习障碍女性的文章。

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引用次数: 0

Disability, care and family law By Beverley Clough, Jonathan Herring(Eds.), Routledge. 2021. pp. 244. 残疾、护理和家庭法》，Beverley Clough、Jonathan Herring（编著），Routledge. 2021. pp.

IF 1.5 4区医学 Q3 EDUCATION, SPECIAL

British Journal of Learning Disabilities

Pub Date : 2023-10-16 DOI: 10.1111/bld.12560

Alison Tarrant

引用次数: 0

Supporting people to live well: A multimethod study of Shared Lives (adult placement) 支持人们美好生活：共享生活（成人安置）的多方法研究

IF 1.5 4区医学 Q3 EDUCATION, SPECIAL

British Journal of Learning Disabilities

Pub Date : 2023-10-05 DOI: 10.1111/bld.12556

Nadia Brookes, Sinead Palmer, Grace Collins, Lisa Callaghan

Background

Shared Lives (adult placement) is a model of community-based support where an adult who needs support and/or accommodation moves into or regularly visits the home of an approved Shared Lives carer. It is an established but small-scale service used mainly by adults with learning disabilities. However, little research has been conducted about whether and in what ways this model can support people to live well.

Method

This article presents findings from outcome measures focused on well-being for a sample of 39 people supported by Shared Lives in England. Fifteen semistructured interviews were also conducted by peer/coresearchers to supplement the quantitative data. Data collection took place between June 2017 and September 2018.

Findings

Findings indicated that people using Shared Lives generally had good outcomes across all of the measures. All of those interviewed identified areas of their life where Shared Lives had made a positive difference, particularly with relationships and activities.

Conclusions

Limitations to the research mean that more work is needed to fully understand the role Shared Lives plays in supporting people to live well and in comparison to other forms of community support.

背景共享生活（成人安置）是一种以社区为基础的支持模式，需要支持和/或住宿的成人可搬到经批准的共享生活照顾者家中或定期到访。这是一种成熟但规模较小的服务，主要供有学习障碍的成年人使用。然而，关于这种模式能否以及以何种方式帮助人们过上美好生活的研究却很少。方法本文介绍了对英格兰 39 名 "共享生活 "支持者进行的以幸福感为重点的结果测量的结果。同行/核心研究者还进行了 15 次半结构化访谈，以补充定量数据。数据收集工作于 2017 年 6 月至 2018 年 9 月期间进行。研究结果研究结果表明，使用 "共享生活 "的人在所有衡量标准方面普遍取得了良好的成果。所有受访者都指出了 "共享生活 "为其生活带来积极变化的领域，尤其是在人际关系和活动方面。结论研究的局限性意味着需要开展更多工作，以充分了解 "共享生活 "在支持人们过上美好生活方面所发挥的作用，以及与其他社区支持形式的比较。

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引用次数: 0

The Routledge international handbook of critical autism studies By Damian Milton and Sara Ryan: Routledge. 2023. pp. 311. £152.00 (hbk). ISBN: 978-0-367-52107-3. £34.39 (ebk). ISBN: 9781003056577 Routledge 国际自闭症批判研究手册作者：DamianMilton 和 SaraRyan：Routledge。2023. pp.311.152.00英镑（精装本）。ISBN: 978-0-367-52107-3.ISBN: 9781003056577

IF 1.5 4区医学 Q3 EDUCATION, SPECIAL

British Journal of Learning Disabilities

Pub Date : 2023-09-11 DOI: 10.1111/bld.12555

Sarah Marsden

引用次数: 0

What are the experiences of families facilitating the repatriation of their relatives with learning disabilities and/or autism back to Guernsey? 协助将有学习障碍和/或自闭症的亲属遣返回格恩西岛的家庭有哪些经验？

IF 1.5 4区医学 Q3 EDUCATION, SPECIAL

British Journal of Learning Disabilities

Pub Date : 2023-09-11 DOI: 10.1111/bld.12554

Rebecca Wallace, Julian Morris, Melanie Hodgkinson

Background

Recent Government guidelines have promoted returning people with learning disabilities and/or autism from out-of-area placements to their local communities. These transitions not only impact the individuals but also their families.

Methods

This study explores the experiences of family members who have been involved in the repatriation of people with learning disabilities and/or autism to their local community in Guernsey. Using semi-structured interviews, participants' experiences were analysed using Interpretative Phenomenological Analysis.

Findings

Three superordinate themes emerged: ‘distress, powerlessness and hopelessness’, ‘not feeling included’ and ‘parental role’.

Conclusions

The findings highlight the barriers and successes family members experience when supporting a relative with learning disabilities and/or autism to move back to Guernsey. Recommendations for healthcare services such as requirements for better communication and to include families in decision-making are discussed.

背景政府最近的指导方针提倡将学习障碍者和/或自闭症患者从地区外的安置点送回当地社区。这些过渡不仅影响到个人，也影响到他们的家庭。方法本研究探讨了参与将学习障碍者和/或自闭症患者送回格恩西岛当地社区的家庭成员的经历。通过半结构式访谈，采用解释性现象分析法对参与者的经历进行了分析。结果出现了三个首要主题："苦恼、无力感和绝望"、"不被包容 "和 "父母的角色"。结论研究结果强调了家庭成员在支持有学习障碍和/或自闭症的亲属迁回格恩西岛时遇到的障碍和取得的成功。研究还讨论了对医疗保健服务的建议，如加强沟通和让家人参与决策的要求。

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引用次数: 0