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Indirect intervention with staff to support a male with mild learning disability navigate the community setting: A clinical case study 对工作人员进行间接干预,以支持一名有轻度学习障碍的男性在社区环境中游刃有余:临床案例研究
IF 1.5 4区 医学 Q3 EDUCATION, SPECIAL Pub Date : 2024-01-12 DOI: 10.1111/bld.12574
Dafni Katsampa, Louisa Rhodes

Background

People with learning disabilities following a long-term stay in forensic settings may experience difficulties reintegrating in the wider community. Indirect interventions can be helpful for care providers and family members to reflect on their practices and improve the quality of life of people with learning disabilities. Although indirect interventions are being implemented in learning disability settings, research is limited.

Methods

This clinical case study recounts an indirect intervention with care providers of a male with mild learning disability.

Findings

We recount the referral and assessment processes, the initial hypotheses and formulation of the service users' presenting difficulties. We demonstrate how a systemically informed indirect intervention with staff can be used to improve the living conditions of a man with mild learning disability and provide reflections on working with multiple interdependent systems surrounding vulnerable individuals in a specialist learning disability setting.

Conclusion

Indirect interventions with the care networks supporting an individual with a learning disability can be a useful way to conceptualise the barriers and facilitators for community integration. Indirect interventions can also offer a reflective space for staff to share their own difficulties and prevent burnout.

有学习障碍的人在法医机构长期住院后,可能会在重新融入更广泛的社区中遇到困难。间接干预可以帮助护理提供者和家庭成员反思他们的做法,提高学习障碍者的生活质量。尽管间接干预措施正在学习障碍环境中实施,但研究还很有限。
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引用次数: 0
Challenges in care and service provision for older adults with intellectual disabilities and complex age-related conditions in Ireland 爱尔兰为智障和患有复杂老年病的老年人提供护理和服务所面临的挑战
IF 1.5 4区 医学 Q3 EDUCATION, SPECIAL Pub Date : 2024-01-05 DOI: 10.1111/bld.12572
Fintan Sheerin, Sandra Fleming, Peter May, Philip McCallion, Mary McCarron, Amara Naseer, Georgia Lalor, Maureen D'Eath

Background

People with intellectual disabilities are living longer and are increasingly diverse, with health and care needs that are varied and complex. Without changes to funding, services have found it difficult to respond to needs and wishes.

Method

A descriptive mixed methods design study, data were collected through questionnaire, focus groups and individual interviews from intellectual disability service managers, direct care staff and older people with intellectual disabilities and family members.

Results

Continued reticence on the part of some community healthcare providers to treat people with intellectual disability was noted. Although some service innovations were noted, housing, staffing levels, staff mix and the timely provision of equipment were all reported to impact the ability of services to respond to changing needs. Current per-capita funding practices were reported as unresponsive to growing age-related complexity and fundamentally unsustainable.

Conclusions

The health inequalities experienced by people with intellectual disabilities are compounded as they age with complex age-related health needs. There is an urgent need for revision of the service model in Ireland and instigation of flexible and responsive approaches to funding.

智障人士的寿命越来越长,而且越来越多样化,他们的健康和护理需求也多种多样、错综复杂。这项研究采用描述性混合方法设计,通过问卷调查、焦点小组和个别访谈的方式收集数据,访谈对象包括智障服务管理人员、直接护理人员、智障老年人及其家庭成员。研究人员注意到,一些社区医疗服务提供者仍对智障人士的治疗持保留态度。尽管注意到了一些服务创新,但住房、人员配置水平、人员组合和设备的及时提供都对服务应对不断变化的需求的能力产生了影响。据报告,目前的人均资助做法无法应对与年龄相关的日益复杂的问题,而且从根本上来说是不可持续的。智障人士随着年龄的增长,其与年龄相关的复杂健康需求加剧了他们所经历的健康不平等。爱尔兰亟需修改服务模式,并采用灵活、反应迅速的供资方法。
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引用次数: 0
Motherhood and intellectual disability in Spain: Experienced difficulties and shared desires for change 西班牙的母亲与智障人士:经历的困难和共同的变革愿望
IF 1.5 4区 医学 Q3 EDUCATION, SPECIAL Pub Date : 2023-12-11 DOI: 10.1111/bld.12571
Ana María Rio-Poncela, Susana Rojas-Pernia

Backgroud

Despite the advancements in the rights of persons with disabilities in Western countries, the motherhood of women with intellectual disabilities remains scarcely visible. The approval of the Convention on the Rights of Persons with Disabilities (2006) and its subsequent ratification by the Spanish Government (2008) recalls the obligation to fulfil the rights of persons with disabilities to found a family (art. 23) and to choose who they want to live with (art. 19). While the importance of this legislation is undeniable, the personal experiences of women with intellectual disabilities still demand effective changes.

Methods

This article reports the results of a study entitled Subjectivities and motherhood in women with intellectual disabilities. Reflections in dialogue through an inclusive research project. In this study, we delved into the stories of 13 women, aged between 24 and 72, to learn about their motherhood experiences (before, during and after making the decision of being mothers) and to identify the barriers and supports encountered. Methods for data collection included individual semi-structured interviews, discussion groups and other narrative and visual resources (images and biograms).

Findings

This study explores in depth the obstacles identified by the participating mothers, which have been organised around six themes: (1) information and guidance on sexuality and family planning, (2) assistance of health services, (3) employment and housing situation, (4) child custody, (5) raising children, and (6) informal support. The participants encountered difficulties in all the above fields related to contextual factors. In other words, these barriers do not derive from individual issues centred on their disability, but from factors that often do not depend on mothers with intellectual disabilities, such as deprivation of socio-educational opportunities.

Conclusions

Our results show the nuanced ways in which these mothers were immersed in a social system that questions them as ‘good mothers’ and violates their rights. As we discussed, the participants' desires and decisions to engage and/or continue with motherhood constitute an exercise of resistance to this system.

尽管西方国家在残疾人权利方面取得了进步,但智障妇女做母亲的情况仍然很少见。西班牙政府批准了《残疾人权利公约》(2006 年),随后又批准了该公约(2008 年),这表明西班牙政府有义务履行残疾人建立家庭的权利(第 23 条)和选择与谁共同生活的权利(第 19 条)。虽然这项立法的重要性毋庸置疑,但智障妇女的亲身经历仍然要求对其进行有效的修改。
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引用次数: 0
Contributing causes of mortality and potentially avoidable deaths of people with intellectual or learning disability: A data-linkage study 智力或学习障碍人士死亡的诱因和可能避免的死亡:数据关联研究
IF 1.2 4区 医学 Q3 EDUCATION, SPECIAL Pub Date : 2023-12-06 DOI: 10.1111/bld.12569
Michelle Iffland, Mikaela Jorgensen, Donna Gillies

Background

People with intellectual disabilities are at much higher risk of preventable deaths compared to the general community. However, studies identifying the cause of death in people with intellectual disability are generally based on one primary cause which is frequently attributed to the person's disability. Therefore, the aim of this study was to identify the most common associated causes that may have contributed to the deaths of Australians with intellectual or learning disabilities, particularly those that may be avoidable.

Methods

Linked data that had previously been used to identify underlying causes of deaths were re-analysed to determine other contributing causes of death in Australians with intellectual disabilities aged under 65 years who accessed disability services between July 2013 and June 2018.

Findings

Two thousand three hundred and thirty-three deaths occurred among 180,790 people with intellectual disability. Contributing causes of death with the greatest disparities compared to the general community were lung diseases due to external agents (adjusted rate ratio (RR) 70.6 (95% confidence interval [95% CI] 63.7–78.2), influenza and pneumonia (RR 18.3; 95% CI 16.4–20.4), and coronary heart disease (RR 3.3; 95% CI 2.8–3.8).

Conclusions

Analysing all contributing causes of death in people with intellectual disabilities can ensure that the higher rates of preventable deaths in people with intellectual disability are identified and addressed earlier in the disability and health sectors.

与普通人相比,智障人士的可预防死亡风险要高得多。然而,确定智障人士死因的研究一般都是基于一个主要原因,而这个原因往往被归咎于智障人士的残疾。因此,本研究旨在确定可能导致澳大利亚智障或学习障碍人士死亡的最常见相关原因,尤其是那些可能可以避免的原因。
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引用次数: 0
Records of quality indicators for management of long-term health conditions of patients with intellectual disabilities in Dutch residential care 荷兰寄宿护理机构智障患者长期健康状况管理质量指标记录
IF 1.2 4区 医学 Q3 EDUCATION, SPECIAL Pub Date : 2023-12-06 DOI: 10.1111/bld.12570
Milou van den Bemd, Viviana Suichies, Erik Bischoff, Geraline L. Leusink, Maarten Cuypers
<div> <section> <h3> Background</h3> <p>Type 2 diabetes mellitus, cardiovascular disease and chronic obstructive pulmonary disease contribute significantly to societal and individual impact globally. High-quality management of these long-term health conditions is important to prevent deterioration of health, although potentially more complex for patients with intellectual disabilities in residential care. Disease management in this context particularly benefits from complete and accurate recording of disease management. Without complete records, long-term health conditions are more difficult to track due to the level of uncertainty regarding which clinical examinations have and have not been performed. This study therefore aims to examine the recording routines of quality indicators for disease monitoring for chronically ill patients with intellectual disabilities in Dutch residential care.</p> </section> <section> <h3> Methods</h3> <p>This retrospective study utilised medical record data from a large Dutch long-term care provider. We assessed the occurrence of cardiovascular disease (ICPC-2 codes K74, K75, K76, K89 and K90), type 2 diabetes mellitus (T90, T90.02) and/or COPD (R91, R95). For adults with intellectual disabilities and long-term condition, we analysed data entries in an 18-month period (between July 2020 and December 2021). Observed consultation rates were calculated and presented in median with interquartile range and contrasted against the baseline number of consultations in primary care. Information on recorded quality indicators was presented in frequencies and percentages.</p> </section> <section> <h3> Findings</h3> <p>Of the three long-term conditions investigated, the most common was type 2 diabetes mellitus (8.6%; <i>n</i> = 287), followed by cardiovascular disease (5.8%; <i>n</i> = 195) and COPD (3.0%; <i>n</i> = 101). Of those who received management for their long-term condition from their contracted GP, patients with type 2 diabetes mellitus, cardiovascular disease, or COPD had fewer consultations in 2021 than the Dutch baseline. Discussion of lifestyle was often not recorded. Disease monitoring quality indicators were recorded more often but at a lower frequency than expected.</p> </section> <section> <h3> Conclusions</h3> <p>Because of the infrequent recording of quality indicators, recording of management of long-term conditions for patients with intellectual disabilities in long-term care appears suboptimal. Although this may not directly harm individual patients, it may jeopardise the quality of management of long-ter
2 型糖尿病、心血管疾病和慢性阻塞性肺病在全球范围内对社会和个人的影响巨大。对这些长期健康状况进行高质量的管理对于防止健康状况恶化非常重要,但对于接受寄宿护理的智障患者来说可能更为复杂。在这种情况下,对疾病管理进行完整、准确的记录尤其有益。如果没有完整的记录,就很难对长期健康状况进行跟踪,因为哪些临床检查已经进行,哪些尚未进行,都存在不确定性。因此,本研究旨在检查荷兰寄宿护理机构中智障慢性病患者疾病监测质量指标的记录常规。
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引用次数: 0
Failed ambitions: Kew cottages and changing ideas of intellectual disabilities By  Lee Ann Monk,  David Henderson,  Christine Bigby,  Richard Broome,  David Henderson, Melbourne: Monash University.  2023. pp.  500. £26.99 (Kindle and Print editions). ISBN: 978-1-922633-78-1 失败的抱负:Kew cottages and changing ideas of intellectual disabilities 作者:Lee AnnMonk、DavidHenderson、ChristineBigby、RichardBroome、DavidHenderson,墨尔本:莫纳什大学。2023 年。第 500 页。26.99英镑(Kindle版和印刷版)。国际标准书号:978-1-922633-78-1
IF 1.5 4区 医学 Q3 EDUCATION, SPECIAL Pub Date : 2023-11-28 DOI: 10.1111/bld.12566
Jan Walmsley
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引用次数: 0
‘We became their beginning, their middle and their end’ “我们成了他们的起点,中间和终点。”
IF 1.5 4区 医学 Q3 EDUCATION, SPECIAL Pub Date : 2023-11-27 DOI: 10.1111/bld.12565
Michelle Murphy, Anne-Marie Martin

Background

Communicating with people with severe/profound intellectual disabilities is essential for person-centred, rights-based support. Despite a proliferation of research around COVID-19, there is a dearth of evidence exploring its impact on communication with people with severe/profound intellectual disabilities. This study aimed to explore disability support staff experiences of communicating with people with severe/profound intellectual disabilities through the COVID-19 pandemic.

Methods

A qualitative descriptive study was undertaken. A purposive sample of six disability support staff who supported people with severe/profound intellectual disabilities through the pandemic in four Irish residential services participated in online, semistructured interviews. Data were analysed thematically.

Findings

Six themes were generated including unwavering commitment; running on empty; being a safe haven; empathic understanding; heightened sensitivity and new insights. Participants discussed the impact of COVID-19 on communicating with people they support, the contextual challenges, how these were managed/overcome and new learning that emerged. Although communication challenges did present because of COVID-19 restrictions, communication remained a priority.

Conclusions

Despite the challenges experienced by disability support workers, their unwavering commitment to ensuring the well-being of people with severe/profound intellectual disabilities was identified. This was a small-scale qualitative study but highlights areas warranting further research and makes recommendations for practice and service planning.

对于以人为本、基于权利的支持,与严重/深度智力残疾者沟通至关重要。尽管围绕COVID-19的研究激增,但缺乏证据探讨其对与严重/深度智力残疾者交流的影响。本研究旨在探讨残障人员在新冠肺炎大流行期间与重度/重度智障人士沟通的经验。
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引用次数: 0
Humanization: The humanistic perspective as a guide for supporting people with intellectual disability 人性化:以人文主义视角为指导,支持智障人士
IF 1.5 4区 医学 Q3 EDUCATION, SPECIAL Pub Date : 2023-11-24 DOI: 10.1111/bld.12568
Ran Neuman

Background

Despite humanistic declarations regarding the rights of people with intellectual disability to live a full, meaningful life, in practice, resulting from dilemmas experienced by direct support provides, support is often limited to a focus on functional independence. The aim of this research was to define the theoretical principles by which the gap between humanistic declarations and practice can be overcome.

Method

The research focused on the role perception of 30 direct support providers who participated in semistructured interviews. A case study methodology was used applying an interpretative phenomenological analysis (IPA).

Findings

The interviews revealed that a humanistic perspective has been partially incorporated into the general attitudes of direct support providers. In practice, however, they indicated that they face dilemmas that challenge them in their daily work.

Conclusion

To assist direct support providers in resolving their dilemmas, by adhering to humanistic principles, a ‘humanization’ model is offered. The theoretical principles underlying the model focus on meaningful life as the aim of support, enhancing recipients’ autonomy, adhering to a holistic perspective and conducting dialogues acknowledging the abilities of people with intellectual disability to understand, choose and face challenges. Further examination of the model and its application in practice is recommended.

尽管关于智障人士有过充实、有意义生活的权利的人道主义宣言,但在实践中,由于直接提供支助所经历的困境,支助往往局限于功能独立。这项研究的目的是确定可以克服人文主义宣言与实践之间差距的理论原则。
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引用次数: 0
Intellectual disabilities: Health and social care across the lifespan By  Sheerin Fintan,  Doyle Carmel (Eds.), Switzerland: Springer.  2023. €50.28 (eBook 978-3-031-27496-1, €39.58). ISBN: 978-3-031-27495-4. 智力残疾:SheerinFintan, DoyleCarmel (Eds.) 著,瑞士:Springer.2023.50.28 欧元(电子书 978-3-031-27496-1,39.58 欧元)。ISBN: 978-3-031-27495-4.
IF 1.5 4区 医学 Q3 EDUCATION, SPECIAL Pub Date : 2023-11-21 DOI: 10.1111/bld.12567
Owen Doody
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引用次数: 0
A service evaluation exploring clients' experiences of being on a waiting list for individual psychological therapy with a community learning disability team 一项服务评估,探讨客户在社区学习障碍团队的个人心理治疗等候名单上的经历
IF 1.5 4区 医学 Q3 EDUCATION, SPECIAL Pub Date : 2023-11-20 DOI: 10.1111/bld.12564
Laura Hall

Background

Service user involvement is imperative in the delivery of mental health services. However, a paucity of research has explored how individuals with a learning disability find waiting for therapy. Therefore, this project aimed to explore how service users accessing a community learning disability team experienced waiting for psychological therapy.

Methods

Ten adults on a waiting list for psychological therapy in Yorkshire, UK completed a semistructured interview, which explored their experiences of being on the waiting list. Interviews were transcribed and analysed using thematic analysis.

Findings

Five superordinate themes were drawn from the analysis. Participants recalled long waits for therapy, struggled waiting and were unsure when therapy would start. Relief and hopefulness were common when they were put forward for therapy. Difficulties reading and/or remembering letters were prominent. Keeping busy and support from others helped participants cope while waiting. Participants would have valued additional support including having someone on call, regular check-ins and information on other appropriate services.

Conclusions

This project led to a range of recommendations to inform a psychology waiting list standard operating procedure, service developments and improve the waiting list experience for service users. A future project exploring parent and carer experiences of the waiting list is warranted.

在提供精神卫生服务时,服务使用者的参与是必不可少的。然而,很少有研究探讨有学习障碍的人如何寻找等待治疗的机会。因此,本项目旨在探讨社区学习障碍小组的服务使用者在等待心理治疗时的体验。
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引用次数: 0
期刊
British Journal of Learning Disabilities
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