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Rehabilitation for adults with an intellectual disability and mental health and behavioural complexities: A scoping review 智力残疾、精神健康和行为复杂的成年人的康复:范围界定审查
IF 1.2 4区 医学 Q3 EDUCATION, SPECIAL Pub Date : 2024-02-29 DOI: 10.1111/bld.12581
Jonathan Williams, Saman Shahzad, Mizla Manandhar-Richardson, Sujeet Jaydeokar, Vicky Bramwell, Adam Garland, Christine Hutchinson, Mahesh Odiyoor
<div> <section> <h3> Background</h3> <p>There has been significant focus in the past decade on reducing admissions to assessment and treatment units for people with intellectual disabilities experiencing mental health or behavioural concerns. This has included the development of intensive support functions of National Health Service Learning Disability services to bolster community support and treatment for people at risk of admission. However, in recent years, there has been increased consideration of service development to include rehabilitation functions which would aim to proactively provide medium-term additional input to individuals with a complexity of need. This input would aim to improve future trajectories and support the individuals to remain living a good life in their own community. This review focuses on community and in-patient approaches to meeting a complexity of need.</p> </section> <section> <h3> Method</h3> <p>A scoping review was carried out according to established best practice guidelines. Papers returned from the search were screened by the following inclusion criteria (a) Models or Outcomes of Rehabilitation; (b) Intellectual Disability Population; (c) Sample being 18 or above and (d) longer than short-term stay/treatment, defined as 6 months or longer; and (e) Mental health and/or behaviour complexities. The search was conducted in electronic databases CINAHL, PsycInfo, Medline, Embase and Social Policy & Practice. Here, 3790 articles were initially identified and 27 were ultimately included in the review.</p> </section> <section> <h3> Findings</h3> <p>There are few studies evaluating rehabilitation for people with intellectual disabilities and mental health or behavioural concerns. There was some evidence that accessing assessment and treatment inpatient provision resulted in clinical improvements. Some studies demonstrated initial evidence that longer term rehabilitation was beneficial as a step-down from inpatient care. Some key principles were identified in terms of rehabilitation approaches: the need for person-centred creative approaches, suitable staff training, focus on building skills, and a focus on increasing quality of life.</p> </section> <section> <h3> Conclusion</h3> <p>There are some indicators of what good rehabilitation services might comprise for people with an intellectual disability, who have rehabilitation needs. However, far more research and guidance are required in this area. In particular, it is unclear whether rehabilitation is best provided within an inpatient or community model, and further detail is required about optimal components of such rehabilitation.</p>
背景在过去的十年中,人们一直非常关注如何减少智障人士因精神健康或行为问题而被送往评估和治疗机构的情况。这包括发展国民健康服务学习障碍服务的强化支持功能,以加强对有入院风险的人的社区支持和治疗。然而,近年来,人们越来越多地考虑将康复功能纳入服务发展,旨在积极主动地为有复杂需求的个人提供中期额外投入。这种投入的目的是改善未来的生活轨迹,支持个人在自己的社区继续过上美好的生活。本综述重点关注满足复杂需求的社区和住院方法。根据以下纳入标准对检索到的论文进行筛选:(a)康复模式或结果;(b)智障人群;(c)样本年龄在 18 岁或以上;(d)住院/治疗时间超过短期,定义为 6 个月或以上;以及(e)精神健康和/或行为复杂性。检索在电子数据库 CINAHL、PsycInfo、Medline、Embase 和 Social Policy & Practice 中进行。研究结果很少有研究对智障人士和精神健康或行为问题人士的康复进行评估。有证据表明,住院评估和治疗可改善临床症状。一些研究初步证明,较长期的康复治疗作为住院治疗的下一步是有益的。在康复方法方面,确定了一些关键原则:需要以人为本的创造性方法、适当的员工培训、注重培养技能以及注重提高生活质量。然而,这一领域还需要更多的研究和指导。特别是,目前还不清楚在住院模式还是社区模式下提供康复服务最合适,还需要进一步详细了解此类康复服务的最佳组成部分。
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引用次数: 0
The demographic and diagnostic profile of women with intellectual disability and mental health disorder in New South Wales and patterns of service use: A data linkage study 新南威尔士智障和精神障碍妇女的人口和诊断概况以及服务使用模式:数据关联研究
IF 1.5 4区 医学 Q3 EDUCATION, SPECIAL Pub Date : 2024-02-29 DOI: 10.1111/bld.12575
Erin L. Whittle, Karen Fisher, Preeyaporn Srasuekbul, Julian Trollor

Background

Current evidence indicates that intellectual disability and gender are both factors in differential usage of services. However, there are limited data about the demographic and service usage patterns of people with intellectual disability who use mental health services. This is particularly true in relation to women with intellectual disability with mental ill health. Interrogation of large-scale linked data sets can provide valuable insights into patterns of service usage among marginalised groups.

Method

A large collaborative data linkage project was assembled with the overarching aim of providing an epidemiological profile of the health (including mental health), health service use, mortality and other service system contacts of people with intellectual disability in New South Wales (NSW), Australia. These linked data were used to interrogate the demographic, diagnostic and service use profiles of women with intellectual disability who have sought mental health support in NSW.

Results

The linked data demonstrated important differences in patterns of diagnosis and service use for women with intellectual disability and mental health disorders, when compared to women without intellectual disability and men with and without intellectual disability, with mental health disorders. The diagnostic profile of women with intellectual disability reflected the gendered nature of diagnoses found in the wider population. Women with intellectual disability also experienced higher rates of diagnostic instability than other groups.

Conclusions

The intersection between gender, intellectual disability and mental health has an effect on diagnostic profile and patterns of service use for women with intellectual disability. These differences are important and may impact targeted service delivery and planning for women with intellectual disability who have sought mental health support.

背景目前的证据表明,智力残疾和性别都是造成服务使用情况不同的因素。然而,有关使用精神健康服务的智障人士的人口统计和服务使用模式的数据却很有限。对于患有精神疾病的智障女性来说,情况尤其如此。对大规模链接数据集进行查询可以为了解边缘化群体的服务使用模式提供有价值的信息。方法 澳大利亚新南威尔士州(NSW)开展了一个大型合作数据链接项目,其总体目标是提供智障人士的健康(包括精神健康)、医疗服务使用、死亡率和与其他服务系统接触的流行病学概况。这些关联数据被用于分析新南威尔士州寻求精神健康支持的智障女性的人口统计学、诊断和服务使用概况。结果关联数据显示,与无智障女性和有或无智障、有精神健康障碍的男性相比,智障女性和有精神健康障碍的女性在诊断和服务使用模式上存在重大差异。智障妇女的诊断情况反映了更广泛人群中诊断的性别性质。结论:性别、智障和精神健康之间的交叉影响了智障妇女的诊断概况和服务使用模式。这些差异非常重要,可能会影响到为寻求心理健康支持的智障女性提供的有针对性的服务和规划。
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引用次数: 0
Staffs' experiences and strategies to maintain care for individuals with intellectual disabilities living in supported living facilities during the Covid-19 pandemic 工作人员在 Covid-19 大流行期间为生活辅助设施中的智障人士提供护理的经验和策略
IF 1.5 4区 医学 Q3 EDUCATION, SPECIAL Pub Date : 2024-02-29 DOI: 10.1111/bld.12589
Ellen M. I. Ersfjord, Tanja Plasil, Hege M. Johnsen

Background

We explored the experiences of staff working in Norwegian community-based living facilities, caring for people with intellectual disabilities during the Covid-19 pandemic, and what self-regulatory strategies staff used to maintain health and care service delivery and contribute to organisational resilience.

Methods

A qualitative design was utilized. Data were collected from September 2021 to April 2022 with individual and focus group interviews. In this study, 25 staff members participated. Thematic analysis was conducted.

Findings

Five main themes were identified regarding the experiences of staff during the pandemic: Lockdown of facilities, social isolation of residents, lack of health follow-up, high sick leave rates and communication challenges. Only some of the strategies to mitigate pandemic-related challenges were based on current Norwegian infection control guidelines. Some strategies were successful while others were not and some were negligent and challenged the delivery of health and care services for the residents.

Conclusions

Our study shows that people with intellectual disabilities living in the community-based living facilities were subjected to human rights violations and violations of the Norwegian infection control law. This was caused by a lack of several important organisational qualities in the facilities.

背景我们探讨了挪威社区生活设施的工作人员在Covid-19大流行期间照顾智障人士的经历,以及工作人员采用了哪些自我调节策略来维持医疗和护理服务的提供并促进组织的复原力。数据收集时间为 2021 年 9 月至 2022 年 4 月,采用了个人访谈和焦点小组访谈的方式。本研究共有 25 名员工参与。研究结果就工作人员在大流行病期间的经历确定了五大主题:封锁设施、居民的社会隔离、缺乏健康跟踪、高病假率和沟通挑战。只有部分缓解大流行相关挑战的策略是以挪威现行的感染控制指南为基础的。我们的研究表明,生活在社区生活设施中的智障人士的人权受到了侵犯,挪威的感染控制法也受到了违反。造成这种情况的原因是这些设施缺乏若干重要的组织素质。
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引用次数: 0
‘I wouldn't change my flat for anything’. Is there scope for more people with learning disabilities to rent their own homes? 我不会为任何事改变我的公寓"。是否有可能让更多有学习障碍的人租住自己的房子?
IF 1.5 4区 医学 Q3 EDUCATION, SPECIAL Pub Date : 2024-02-25 DOI: 10.1111/bld.12584
Deborah Quilgars, Eppie Leishman, David Abbott, Samantha Clarke, Becca Cooper, Stephen Hodgkins, Paul Scarrott, Andy Pollin, Lois Beech

Background

Policy, research, and people's own experience in the UK consistently highlight the central importance of a home of choice for people with learning disabilities. Yet attention is mainly focused on the development of specialist as opposed to generic housing options for people with learning disabilities.

Methods

This article reviews the findings from a major research study looking at the rented housing sector for people with learning disabilities. The study comprised of a review of local authority learning disability strategies; a ‘national conversation’ with key stakeholders; and thirty-five, qualitative interviews with people with learning disabilities who rent their own homes.

Findings

The research found that local learning disability strategies are lacking in information on rented housing for people. A national consultation identified a range of challenges in accessing rented housing for people wishing to do so. Interviews with people with learning disabilities renting their own place confirmed some of these problems but also, crucially, highlighted the success for most who rented their own home. People liked renting and were managing their tenancies well with relatively modest support.

Conclusions

The evidence points to the possible benefits of a greater focus on renting for people with learning disabilities.

背景英国的政策、研究和人们的亲身经历都一致强调,为学习障碍者提供一个可供选择的居所至关重要。然而,人们的注意力主要集中在为有学习障碍的人开发专业而非普通的住房选择上。方法本文回顾了一项针对有学习障碍的人的租房部门的大型研究的结果。该研究包括对地方当局学习障碍战略的回顾;与主要利益相关者的 "全国性对话";以及对租住自己房屋的学习障碍者进行的 35 次定性访谈。一项全国性咨询确定了希望租房者在租房方面面临的一系列挑战。对租房居住的学习障碍人士进行的访谈证实了其中的一些问题,但至关重要的是,访谈也强调了大多数租房居住者所取得的成功。他们喜欢租房,并且在相对较少的支持下就能很好地管理自己的租房。
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引用次数: 0
In response to ‘Day service cultures from the perspectives of autistic people with profound learning disabilities’ (Ned Redmore) 回应 "从有深度学习障碍的自闭症患者的角度看日间服务文化"(Ned Redmore)
IF 1.5 4区 医学 Q3 EDUCATION, SPECIAL Pub Date : 2024-02-25 DOI: 10.1111/bld.12586
Shalim Ali, Andrew Power
<p>My name is Shalim Ali. I am part of a research team and have worked on different research projects. I am also an expert by experience with Choice Support. I write a column in the Community Living magazine, commissioned by Saba Salman. I have lived independently for 3 years.</p><p>My name is Andrew Power. I am a researcher in Geography at the University of Southampton. I am interested in the role of place in people's lives. I work closely with people with learning disabilities to find out about their support in the community and in care settings and think about ways to improve it. I met Shalim when we began our recent research project, Feeling at Home.</p><p>We were invited to write a In Response article by the journal to one of the papers in this issue.</p><p>We chose Ned Redmore's article (2023) <i>Day service cultures from the perspectives of autistic people with profound learning disabilities</i> for the <i>British Journal of Learning Disabilities</i>. We both saw Ned present this research at the Social History of Learning Disabilities conference in July 2023. We both found that it was a very accessible talk and clearly presented.</p><p>Ned's article is about how a good service culture can be developed in a day service for autistic people with profound learning disabilities. The service in the study is a local charity based in the North of England with 20–30 clients.</p><p>We chose to use the word client for two reasons. First, Ned used this term to describe people who attended the day centre. Second, Shalim also uses the term ‘client’ in his professional role as a quality checker in his reports and as an expert by experience in his research. We preferred this to ‘service user’ and thought that writing ‘people who attend the day centre’ every time was too long for this article.</p><p>Shalim also thought that the paper related well to his own experience of day services when he was younger. During this time, staff were practical, enthusiastic for the job, engaging, polite and valued what they did. Staff were also very diverse in ethnicity.</p><p>In reading the paper, we found out that the researcher Ned worked very closely with a day service client ‘Ben’ with profound and multiple learning disabilities. Ben is described as a 27-year-old man who communicated through vocalisations, direction and body language. He was provided support at home and 2-day services.</p><p>We asked Ned to explain why he tried to focus on Ben's experiences. Ned said that he wanted to try to understand Ben's experiences. He wanted to try and change his own views of the day service in line with Ben's. This would allow Ned to think about service culture in a way that was more in line with the way Ben viewed it.</p><p>We then asked Ned to explain how he developed this relationship. Ned explained that this was a process for him and it took time. When he first went to the day service, he looked at and wrote about the things that the day service staff thought were important.
1 我们是谁?我是研究团队的一员,曾参与过不同的研究项目。同时,我也是 "选择支持 "项目的专家。受萨巴-萨尔曼委托,我在《社区生活》杂志上撰写专栏。我的名字叫安德鲁-鲍尔(Andrew Power)。我是南安普顿大学地理学研究员。我对地方在人们生活中的作用很感兴趣。我与有学习障碍的人密切合作,了解他们在社区和护理环境中的支持情况,并思考改善的方法。我和 Shalim 是在最近的研究项目 "家的感觉"(Feeling at Home)开始时认识的。
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引用次数: 0
Enabling Dominic's voice and participation through the cocreation of an ‘I am’ Digital Story for supporting his post-19 transition from special school to adult social care 通过共同创作 "我是 "数字故事,让多米尼克发出自己的声音并参与其中,以支持他 19 岁后从特殊学校过渡到成人社会关怀机构
IF 1.2 4区 医学 Q3 EDUCATION, SPECIAL Pub Date : 2024-02-14 DOI: 10.1111/bld.12585
Cleo Barron, Sarah Parsons, Hanna Kovshoff

Background

Transitions into adult services for young people with complex communication needs are often experienced as challenging and rarely include the voices of young people.

Methods

We piloted a person-centred method to enable one young person's (Dominic) voice to be included in his transition to adult services. An ‘I am’ Digital Story is a short video (c.6 min) that provides a strengths-based representation of a young person that is designed to be shared with and between settings. The process and outcomes of story cocreation were evaluated through semi-structured interviews with key stakeholders.

Findings

The process of story creation was evaluated very positively by key stakeholders. The information about Dominic's strengths and preferences helped the new setting to prepare for Dominic's arrival.

Conclusions

The ‘I am’ Digital Story method provides a powerful and accessible method for including the voices of young people with complex communication needs in their transitions.

有复杂沟通需求的青少年在过渡到成人服务时往往会遇到很多挑战,而且很少有青少年的声音。
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引用次数: 0
Breaking new ground? An analysis of the use of embedded occupational therapy in a postsecondary education programme for students with intellectual disabilities 开辟新天地?智障学生中学后教育课程中嵌入式职业疗法的使用分析
IF 1.5 4区 医学 Q3 EDUCATION, SPECIAL Pub Date : 2024-02-08 DOI: 10.1111/bld.12583
Barbara Ringwood, Jennifer Banks, Michael Shevlin

Background

Despite the growing diversity among students in higher education, nonprogression to postsecondary education persists for many students with intellectual disabilities with low completion rates for those who do progress. Research suggests that occupational therapy (OT) support can be extremely beneficial in assisting students. Less is known however about the impact of OT in higher education. This study aims to examine the use of OT embedded in a postsecondary programme for students with intellectual disabilities.

Methods

This study uses a scoping review of relevant literature and a qualitative analysis of OT working in a higher education programme specifically designed for students with intellectual disabilities in Ireland.

Findings

This paper highlights how the OT support within this programme uses a four-fold collaborative approach supporting students, staff, business partners and wider organisational structures in the university.

Conclusion

The analysis highlights the opportunities for collaboration between OT and curriculum developers, teaching and ancillary staff and students in higher education along with the significant OT input into work placements and internships with business partner mentors. Challenges in educating stakeholders to understand OT in the higher education environment would suggest a substantial need for further research.

尽管接受高等教育的学生日益多样化,但许多智障学生仍然无法升入中学后教育机构,而那些升入中学后教育机构的学生完成学业的比率也很低。研究表明,职业治疗(OT)支持对帮助学生大有裨益。然而,人们对职业疗法在高等教育中的影响却知之甚少。本研究旨在探讨在为智障学生开设的中学后课程中使用职业疗法的情况。
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引用次数: 0
A survey on service users' perspectives about information and shared decision-making in psychotropic drug prescriptions in people with intellectual disabilities 关于服务使用者对智障人士精神药物处方信息和共同决策的看法的调查
IF 1.5 4区 医学 Q3 EDUCATION, SPECIAL Pub Date : 2024-02-01 DOI: 10.1111/bld.12582
Gerda de Kuijper, Josien Jonker, Rory Sheehan, Angela Hassiotis

Background

In people with intellectual disabilities and mental disorders and/or challenging behaviours, rates of psychotropic drug prescription are high. In clinical treatments and evaluations, all stakeholders should be involved in a process of shared decision-making (SDM). We aimed to investigate the perspectives of clients and their carers on clients’ treatments with psychotropic drugs.

Methods

We conducted a survey among adults with intellectual disabilities in a Dutch mental healthcare centre providing community, outpatient and inpatient care. Data were collected between January and June 2022. Questions focused on experiences with the provision of information, treatment involvement and SDM and participants' wishes in this regard.

Findings

Respondents (57 clients and 21 carers) were largely satisfied with the overall care from their clinicians, and with how information on the pharmacological treatment was provided verbally, but written information was insufficient or not provided. Seventy per cent of clients and 60% of carers reported being involved in medication decision-making. However, over 75% of participants desired greater involvement in SDM and over 60% in medication reviews.

Conclusions

Service users and representatives were satisfied about the treatment and verbal information on their psychotropic drug use. The provision of written information, the SDM process and ongoing evaluation of psychotropic medication use could be improved.

在智障、精神障碍和/或有挑战行为的人群中,精神药物处方率很高。在临床治疗和评估中,所有利益相关者都应参与共同决策(SDM)过程。我们旨在调查客户及其照顾者对客户使用精神药物治疗的看法。
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引用次数: 0
Strategies to prevent or reduce inequalities in specific avoidable causes of death for adults with intellectual disability: A systematic review 预防或减少智障成人可避免的特定死因中的不平等现象的策略:系统回顾
IF 1.5 4区 医学 Q3 EDUCATION, SPECIAL Pub Date : 2024-01-31 DOI: 10.1111/bld.12576
Pauline Heslop, Emily Lauer
<div> <section> <h3> Background</h3> <p>We now have sufficient evidence demonstrating inequalities in specific avoidable causes of death for adults with intellectual disability compared to their peers without intellectual disability. Apart from covid-19, the largest differentials that disadvantage people with intellectual disability are in relation to pneumonia, aspiration pneumonia, epilepsy, cerebrovascular disease, ischaemic heart disease, deep vein thrombosis, diabetes and sepsis. The aim of this systematic review is to report on strategies at the individual, population or policy levels aimed at preventing these conditions that are applicable to adults with intellectual disability and that have been based on or recommended by research.</p> </section> <section> <h3> Methods</h3> <p>Systematic review of PUBMED, EMBASE, CINAHL, PsychInfo, Social Care Online, International Bibliography of the Social Sciences (IBSS), Web of Science, Scopus, Overton, the Cochrane Library and Google Scholar databases was carried out. Searches were completed on 30 June 2023. Quantitative, qualitative and mixed-methods research; systematic, scoping or evidence-based reviews; and audit and reports of mortality reviews were included. Publications included in the review were about preventing the eight potentially avoidable causes of death.</p> </section> <section> <h3> Findings</h3> <p>Ninety-four papers were included in the review (9 in relation to pneumonia; 11 for aspiration pneumonia; 18 for sudden unexpected death in epilepsy; 7 for cerebrovascular disease; 8 for ischaemic heart disease; 4 for deep vein thrombosis; 31 for diabetes; 6 for sepsis). The eight most frequently occurring potentially avoidable causes of death in people with intellectual disability are very different medical conditions, but they shared striking similarities in how they could be prevented. The literature overwhelmingly implicated the need to make lifestyle changes to address obesity, lack of exercise and poor nutrition, and to have regular medical reviews. In addition, ‘whole-population’ approaches are required that look beyond the individual to the social determinants of health.</p> </section> <section> <h3> Conclusions</h3> <p>We found little peer-reviewed evidence specifically about preventing these conditions in people with intellectual disability. However, most of the literature about preventative strategies pertaining to the general population was applicable to people with intellectual disability, albeit that some ‘reasonable adjustments’ would be required.</p> </section>
我们现在有足够的证据表明,与非智障同龄人相比,智障成人在特定的可避免死因方面存在不平等。除 covid-19 外,对智障人士造成不利影响的最大差异与肺炎、吸入性肺炎、癫痫、脑血管疾病、缺血性心脏病、深静脉血栓、糖尿病和败血症有关。本系统性综述旨在报告个人、人群或政策层面旨在预防这些疾病的战略,这些战略适用于成年智障人士,并以研究为基础或由研究提出建议。
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引用次数: 0
Young adults with intellectual disabilities participating in employment-related activities using the pathways and resources for engagement and participation intervention: A case study 智障青壮年利用 "参与和参与干预途径与资源 "参与就业相关活动:案例研究
IF 1.5 4区 医学 Q3 EDUCATION, SPECIAL Pub Date : 2024-01-31 DOI: 10.1111/bld.12580
Harry James Kinneil Cowan, Loretta Sheppard, Rosamund Harrington

Background

Participation-focused interventions are gaining momentum. The Pathways and Resources for Engagement and Participation (PREP) is one such intervention, and it was investigated in this study for its effectiveness in supporting participation in employment-related activities for young adults with intellectual disabilities in Australia.

Methods

The application of the PREP approach was adapted to accommodate COVID-19 restrictions. Data were gathered from multiple sources in a triangulating manner following a case study design. Measures of performance, satisfaction, and a third measure of involvement were collected using the Canadian Occupational Performance Measure (COPM) in a multiple baseline format. The work questionnaire from the Assessment of Life Habits (Life-H) was administered at three time points, and qualitative data were collected post-intervention via a separate semi-structured interview with four young adults with intellectual disabilities and the two occupational therapist facilitators.

Findings

Performance, satisfaction and involvement scores had increased for 75% or more of employment-related goals at follow-up, although these changes were not statistically significant. Visual analysis indicated improved Life-H accomplishment scores post-intervention, but satisfaction with employment scores did not change. PREP was positively perceived, but the young adults reported needing more support from their participation teams.

Conclusions

The PREP intervention shifts the focus from a skills-based approach to a participation approach to practice and empowers young adults with intellectual disabilities to have greater independence over employment goals and related activities. COVID-19 restrictions limited the application of the PREP approach, but the experience was still valued by the participants, although additional training and support for them and the PREP participation team working with them may have further enhanced their experience and participation outcomes.

以参与为重点的干预措施正在获得越来越多的支持。本研究调查了 "参与和参与途径与资源"(PREP)在支持澳大利亚智障青少年参与就业相关活动方面的有效性。
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British Journal of Learning Disabilities
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