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Journal of Policy and Practice in Intellectual Disabilities最新文献

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Developing Self-Advocacy Skills in Japanese Special Needs High Schools: A Survey of Teachers Educating Students With Intellectual Disabilities
IF 2.5 4区 医学 Q2 HEALTH POLICY & SERVICES Pub Date : 2025-03-03 DOI: 10.1111/jppi.70006
Shuhei Ogawa, Michio Kojima

This study investigated the awareness and frequency of self-advocacy skills development training for students with intellectual disabilities conducted by teachers in Japanese special needs high school sections. The study developed the Difficulty Scale for Self-Advocacy Skills Development (DS-SSD) and the Frequency Scale for Self-Advocacy Skills Development (FS-SSD). Using these tools, the study surveyed teachers in special needs schools for students with intellectual disabilities. Teachers' responses (N = 80) to the DS-SSD underwent exploratory factor analysis, which revealed two primary factors: “difficulty in developing self-understanding” and “difficulty in developing communication skills for rights.” The results indicated that teachers with more years of experience, especially in special needs education, reported less difficulty developing students' self-understanding. Teachers with more years of teaching in schools found developing students' communication skills for rights less challenging. However, the study found no relationship between the frequency of self-advocacy skills development and the teachers' gender, overall teaching experience, or experience in special needs education. These findings offer insights into the challenges and frequency of self-advocacy skills instruction provided in special needs schools. Factors influencing the efficacy of these educational practices are discussed.

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引用次数: 0
Middle-Aged Adults' Perspectives on Caregiving for Their Siblings With Intellectual and Developmental Disabilities
IF 2.5 4区 医学 Q2 HEALTH POLICY & SERVICES Pub Date : 2025-02-24 DOI: 10.1111/jppi.70005
Se Kwang Hwang, Kyung Mee Kim, Chung Eun Lee

There is limited understanding of middle-aged siblings' experiences of assuming caregiving roles and responsibilities in non-Western cultures. This study explored middle-aged siblings' perceived caregiving obligation for their siblings with intellectual and developmental disabilities within the South Korean societal framework that emphasizes the cultural value of “filial piety.” Data from in-depth semi-structured interviews with 13 middle-aged siblings were thematically analyzed. The findings showed that middle-aged siblings exhibit a strong urge to fulfill their filial duties and willingly embrace the primary caregiver role. However, gender, birth order, and financial responsibilities significantly influence the fulfillment of filial obligations, with older, male, and financially secure siblings who co-reside with their siblings with disabilities being more likely to embrace caregiving roles. Despite advancements in South Korea's disability policies, the concept of caregiving as a familial duty rooted in filial piety remains unchanged. Future measures should consider individualized, culturally sensitive support for middle-aged siblings.

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引用次数: 0
Self-Determination and Community Inclusion: Exploring Policy Reform in Day Services for Adults With Intellectual and Developmental Disabilities in the Republic of Ireland
IF 2.5 4区 医学 Q2 HEALTH POLICY & SERVICES Pub Date : 2025-02-14 DOI: 10.1111/jppi.70003
Nicola Maxwell

Adult day services are central to service provision for people with intellectual and developmental disabilities (IDD) in Ireland. Policy reform, in the guise of New Directions, has sought to address the segregated and institutionalized nature of these specialist services. New Directions aims to reorient services toward providing supports to enable users to make self-directed choices and decisions and to be included in their communities, reflecting the values of the Convention on the Rights of Persons with Disabilities (CRPD). Yet, segregated day service provision is increasing and people with IDD continue to be structurally excluded from other opportunities and to have their choices circumscribed. This paper focuses on the interview narratives of staff employed in a day service in Ireland. It explores the disjuncture between, on the one hand, New Directions policy descriptions of day services as supports for self-determination and community inclusion and, on the other, the actualities of day service provision. The findings show that New Directions is understood as a means of providing individualized supports to make choices in inclusive mainstream settings but is not perceived as a clearly articulated policy. The research illustrates that the conditions and opportunities to support self-determination and community inclusion are lacking within day services and several challenges inhibit the aspirations of New Directions. The study recommends that the Irish state meets its human rights obligations to ensure that rights to self-determination and community inclusion for people with IDD are upheld. This requires critical excavation of current service provision and targeted policy resources to ensure that the fundamental rights of people with IDD are upheld.

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引用次数: 0
How We Might Best Develop and Deliver Training and Professional Development in Positive Behaviour Support: A Systematic Review
IF 2.5 4区 医学 Q2 HEALTH POLICY & SERVICES Pub Date : 2025-02-06 DOI: 10.1111/jppi.70002
Julia R. Hall, Danielle Newton, Keith McVilly, Lisa McKay-Brown, Brent Hayward, Mirko Uljarevic

What constitutes good clinical practice in positive behavioural support (PBS) is well established. But how these clinical principles and practices are best translated into education, training and professional development remain unclear. To inform the development of a national blueprint to support education and professional development in PBS, we sought to better understand current approaches to training and education in PBS, its content and delivery. A systematic review of PBS interventions involving staff training was conducted within the timeframe of 1999–2023. Seven databases and one specialist journal (not otherwise indexed) were searched. Articles were identified using key search words; that is, ‘positive behaviour support’, ‘disability’ and ‘training’. Thirty-three articles were identified whose predominant aims were to evaluate the impact and/or efficacy of PBS-based training. Training formats included workshops, lectures, modules, classroom/group instruction and team-based learning through the review of PBS plans. Core content focused on functional behaviour analysis, behaviour support planning, behaviour support strategies and interventions, as well as skills training. Articles reflected similar core content; however, there was a lack of consistency in training delivery, methodology and subsequent outcomes. Despite this, the literature provides evidence to inform the development of a future capabilities framework and guidance on the training, education and professional development of those involved in the delivery of PBS. Subsequently, recommendations are made to inform the education, training and professional development of PBS practitioners and those responsible for the coordination and delivery of support services for people who exhibit challenging behaviour.

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引用次数: 0
Self-Direction in Medicaid Home- and Community-Based Services 医疗补助家庭和社区服务中的自我指导
IF 2.5 4区 医学 Q2 HEALTH POLICY & SERVICES Pub Date : 2024-12-13 DOI: 10.1111/jppi.12531
Carli Friedman

Self-direction allows people with intellectual and developmental disabilities (IDD) to control and direct their services and supports. This study's aim was to examine how states across the United States implemented self-direction in their Medicaid Home- and Community-Based Services (HCBS) 1915(c) waiver programs for people with IDD in fiscal year (FY) 2021. We found 80% of states offered self-direction in their HCBS programs. Across the United States, the goal was to have 13% people with IDD receiving HCBS self-direct (n = 113 692). We found, in FY 2021, 29% of services could be self-directed and 36% of funding was projected for services eligible for self-direction. There were vast differences in how self-direction was implemented across states. For example, among the states that allowed self-direction, goals for self-direction by state ranged from 0.9% to 47.5% of people with IDD receiving HCBS. Moreover, projected spending for services eligible for self-direction varied by state from 0.1% to 100%. We believe everyone that wants to self-direct should have the opportunity to do so.

自我指导使智力和发育障碍者能够控制和指导他们的服务和支持。本研究的目的是研究美国各州如何在2021财政年度(FY)为IDD患者实施医疗补助家庭和社区服务(HCBS) 1915(c)豁免计划的自我指导。我们发现80%的州在他们的HCBS项目中提供自我指导。在整个美国,目标是让13%的IDD患者接受HCBS自我指导(n = 113 692)。我们发现,在2021财年,29%的服务可以自我导向,36%的资金预计用于符合自我导向条件的服务。各州在如何实施自我指导方面存在巨大差异。例如,在允许自我指导的州中,各州的自我指导目标从0.9%到47.5%不等,IDD患者接受HCBS。此外,各州对符合自我指导条件的服务的预计支出从0.1%到100%不等。我们相信,每个想要自我指导的人都应该有机会这样做。
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引用次数: 0
Correction to “What Would Have Helped People With Profound Intellectual and Multiple Disabilities in the UK During COVID-19?” 更正“在COVID-19期间,英国有什么可以帮助患有严重智力残疾和多重残疾的人?”
IF 2.5 4区 医学 Q2 HEALTH POLICY & SERVICES Pub Date : 2024-12-09 DOI: 10.1111/jppi.70001

Bradshaw, J., Maguire, R., Gillooly, A., Hatton, C., Caton, S., Jahoda, A., Oloidi, E., Taggart, L., Todd, S. and Hastings, R., What Would Have Helped People With Profound Intellectual and Multiple Disabilities in the UK During COVID-19?. Journal of Policy and Practice in Intellectual Disabilities, 2024, 21, 4. https://doi.org/10.1111/jppi.70000

In this Erratum, Acknowledgements has been modified to:

Bradshaw, J., Maguire, R., Gillooly, A., Hatton, C., Caton, S., Jahoda, A., Oloidi, E., Taggart, L., Todd, S.和Hastings, R.,《在COVID-19期间,什么能帮助英国的深度智力和多重残疾患者?》智障政策与实践,2024,21(4)。https://doi.org/10.1111/jppi.70000在本勘误中,致谢已被修改为:
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引用次数: 0
What Would Have Helped People With Profound Intellectual and Multiple Disabilities in the UK During COVID-19? 在 COVID-19 期间,什么能帮助英国的重度智力和多重残疾人士?
IF 2.5 4区 医学 Q2 HEALTH POLICY & SERVICES Pub Date : 2024-11-21 DOI: 10.1111/jppi.70000
Jill Bradshaw, Roseann Maguire, Amanda Gillooly, Christopher Hatton, Sue Caton, Andrew Jahoda, Edward Oloidi, Laurence Taggart, Stuart Todd, Richard Hastings

People with profound intellectual and multiple disabilities can be excluded from research and relatively little is known about the experiences of people with profound intellectual and multiple disabilities and their carers during COVID-19. This paper aims to further explore the impact on this group via information provided by paid and family carers. It focuses on key areas such as access to social and health services in addition to questions about health and well-being. In contextualising these results, some comparisons are made to impacts on other groups. This paper also explores what we might do better in future to support this population. Carers were invited to complete an online survey about their experiences and the experiences of people they supported during COVID-19 and to suggest what might have made life better. They were invited to complete this survey at four time points (waves) between December 2020 and December 2022. This paper reports on Waves 1–3, that is to August 2022. Services for people with profound intellectual and multiple disabilities reduced during COVID-19 and have yet to return to pre-pandemic levels. People with profound intellectual and multiple disabilities were reported to experience increased social isolation, deteriorating mental and physical health, increased behavioural signs of distress and reduced life skills. Three areas were identified regarding what would have made life better: opportunities for social contact and activities; improved access to health and social care services, and; consistent and responsive staff. Results are explored in the context of current challenges in service provision, including staff retention and shifts in staff culture during the pandemic.

深度智障和多重残疾人士可能被排除在研究之外,而人们对深度智障和多重残疾人士及其照护者在 COVID-19 期间的经历知之甚少。本文旨在通过有偿照护者和家庭照护者提供的信息,进一步探讨对这一群体的影响。除了有关健康和福祉的问题外,本文还重点关注了社会和医疗服务的获取等关键领域。在对这些结果进行背景分析时,本文将对其他群体受到的影响进行一些比较。本文还探讨了我们今后如何更好地为这一群体提供支持。我们邀请照护者完成一份在线调查,了解他们和他们所支持的人在 COVID-19 期间的经历,并就如何让生活变得更好提出建议。他们受邀在 2020 年 12 月至 2022 年 12 月期间的四个时间点(波次)完成这项调查。本文报告的是第 1-3 波,即截至 2022 年 8 月的情况。在 COVID-19 期间,为深度智障和多重残疾人士提供的服务有所减少,目前尚未恢复到大流行前的水平。据报告,重度智障和多重残疾人士的社会隔离度增加、身心健康恶化、痛苦的行为迹象增加以及生活技能下降。我们确定了三个可以改善生活的领域:社会接触和活动的机会;更好地获得医疗和社会护理服务;以及始终如一、有求必应的工作人员。研究结果结合了当前在提供服务方面面临的挑战,包括大流行病期间员工的留用和员工文化的转变。
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引用次数: 0
Talk-LD and Talk-LD+: A pilot trial of school-based interventions to challenge discrimination and promote inclusion Talk-LD 和 Talk-LD+:挑战歧视、促进包容的校本干预试点试验
IF 2.5 4区 医学 Q2 HEALTH POLICY & SERVICES Pub Date : 2024-10-13 DOI: 10.1111/jppi.12526
Roseann Maguire, Alastair Wilson, Richard P. Hastings, Kartina Scior, Andrew Jahoda

To counteract stigma and discrimination a series of five lessons Talk about Learning Disability (Talk-LD) to promote young people's understanding and acceptance of people with intellectual disabilities were developed for the Scottish secondary school curriculum. This study examined the feasibility of carrying out a randomised control trial comparing the delivery of the lessons alone with the lessons plus an attempt to promote positive contact between participating students and people with intellectual disabilities. The aim was to recruit and randomise 12 schools to receive the lessons alone or the lessons plus contact. The Attitudes Towards Intellectual Disability (ATTID) questionnaire was completed at baseline and a questionnaire about students' understanding of the lesson content was completed at follow-up alone. Twelve schools were recruited and randomised. The lessons were delivered to 23 classes across the 12 schools. Baseline data were obtained for 480 participants. However, school closures due to COVID-19 meant that follow-up data were only obtained from 220 students (six schools) prior to school closures. The attitude measure only detected change in one ATTID scale, indicating students may be more willing to interact with a person with intellectual disabilities post intervention. Three of the six schools randomised to the lessons plus contact group had plans in place for joint activities between students and young people with an intellectual disability. Despite the disruption caused by the Covid pandemic, the findings were encouraging in relation to future research on the Talk-LD lessons. The schools also engaged positively with the process of promoting positive contact with young people with an intellectual disability.

为了消除耻辱感和歧视,苏格兰中学课程开发了五个系列的 "谈谈学习障碍"(Talk-LD)课程,以促进青少年对智障人士的理解和接纳。本研究探讨了进行随机对照试验的可行性,比较了单独授课与在授课的同时尝试促进参与学生与智障人士之间的积极接触。研究的目的是招募 12 所学校并随机分配,让他们接受单纯的课程或课程加接触。在基线阶段填写对智障人士的态度(ATTID)问卷,在后续阶段单独填写关于学生对课程内容理解的问卷。共招募了 12 所学校并进行了随机分组。课程在 12 所学校的 23 个班级进行。共获得了 480 名参与者的基线数据。然而,由于 COVID-19 导致学校关闭,因此在学校关闭之前只获得了 220 名学生(6 所学校)的后续数据。态度测量只检测到一个 ATTID 量表的变化,这表明干预后学生可能更愿意与智障人士互动。在被随机分配到 "上课加接触 "组的六所学校中,有三所学校已经制定了学生与智障青少年开展联合活动的计划。尽管科威德疫情造成了一定的影响,但研究结果对于今后开展 "谈话--残疾 "课程的研究还是令人鼓舞的。学校也积极地参与了促进与智障青少年积极接触的过程。
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引用次数: 0
Moving toward a time-based and balanced quality of life 向基于时间的均衡生活质量迈进
IF 2.5 4区 医学 Q2 HEALTH POLICY & SERVICES Pub Date : 2024-10-06 DOI: 10.1111/jppi.12530
Teresa Maria Sgaramella

Current complex life conditions and changing developmental contexts draw attention to the concept of capabilities, the various combinations of functions a person can do or can be, and the opportunities to achieve them. A future-oriented time perspective is a dimension along which individuals express meaning-making of experiences and expectations regarding their lives, a benchmark for the well-being and satisfaction of the quality of life they experience. Findings from research studies involving adults with disabilities and family members of persons with a disability provide evidence for a time-based model, an approach tapping into both the concept and measurement of quality of life and balancing both current and expected quality of life.

当前复杂的生活条件和不断变化的发展背景促使人们关注能力的概念、一个人可以做的或可以成为的各种功能组合以及实现这些功能的机会。面向未来的时间视角是一个维度,个人据此表达对自己生活的体验和期望的意义建构,是他们体验到的生活质量的幸福感和满意度的基准。涉及成年残疾人和残疾人家庭成员的调查研究结果为基于时间的模式提供了证据,这种方法既考虑到了生活质量的概念和衡量标准,又平衡了当前生活质量和预期生活质量。
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引用次数: 0
Evaluation of an Australian community-based model of care for adults with intellectual and developmental disabilities undergoing procedures under sedation 对澳大利亚基于社区的智力和发育障碍成人镇静手术护理模式的评估
IF 2.5 4区 医学 Q2 HEALTH POLICY & SERVICES Pub Date : 2024-10-06 DOI: 10.1111/jppi.12528
Janet Golder, Reece Adams, Shenae Calleja, Michelle Templeton, Abby Foster

Background

Adults with intellectual and developmental disabilities (IDDs) have higher healthcare needs, but experience difficulties accessing preventative healthcare. Despite this inequity, models of care that address barriers and provide customized treatment are limited, exacerbating vulnerabilities and poorer health outcomes. This study describes the development of a procedural model of care (PMOC) for adults with intellectual and developmental disabilities, and evaluates the sedation tier, exploring procedure and sedation outcomes.

Methods

Development of the PMOC was informed by current evidence and themes identified in stakeholder consultation and literature. A retrospective cohort study evaluated the sedation option within the model, conducted at a community-based disability service in Melbourne, Australia. All records over a 14-month period were included. Descriptive statistics and univariate logistic regression analysis were used to analyze data.

Results

The PMOC includes assessment, intervention, and evaluation tiers. Intervention options range from least to most invasive, culminating in the sedation level (mild; oral psychoactive, moderate; midazolam and nitrous oxide, high; general anesthetic). A total of 127 adults with IDDs received procedures under sedation; median age was 26 years, 61% lived with family, and 81% had multiple disabilities. A total of 197 procedures were referred to CDDH, including immunization (61%) and oral health reviews (23%), and resulted in 98% completion rate. Mild (n = 36) and moderate (n = 95) sedation were used for 67% of procedures. The PMOC correctly predicted 91% of sedation requirements. Living with family (OR 2.211, 95% CI 1.001–4.885, p = 0.05); immunization (OR 7.935, 95% CI 4.025–15.644, p <0.001); and multiple disabilities (OR 3.064, 95% CI 1.123–8.362, p = 0.029) were associated with mild, moderate and high sedation options, respectively.

Conclusions

Models of care offering individualized interventions can support adults with IDDs to receive preventative procedures. Demographic variables may be able to predict sedation requirements. Wider application of this model may reduce health inequity within this vulnerable population.

背景有智力和发育障碍(IDDs)的成年人有更高的医疗保健需求,但却很难获得预防性医疗保健服务。尽管存在这种不公平现象,但能够消除障碍并提供定制治疗的护理模式却很有限,这加剧了他们的脆弱性,并使他们的健康状况更加糟糕。本研究介绍了针对智力和发育障碍成人的程序性护理模式(PMOC)的发展情况,并对镇静层级进行了评估,探讨了程序和镇静结果。 方法 根据当前的证据以及利益相关者咨询和文献中确定的主题,制定了程序性护理模式(PMOC)。在澳大利亚墨尔本的一家社区残疾人服务机构开展了一项回顾性队列研究,对该模型中的镇静选项进行了评估。研究纳入了 14 个月内的所有记录。数据分析采用了描述性统计和单变量逻辑回归分析。 结果 PMOC 包括评估、干预和评价三个层次。干预选项的范围从侵入性最小到侵入性最大,最后是镇静级别(轻度;口服精神活性药物;中度;咪达唑仑和氧化亚氮;高度;全身麻醉)。共有 127 名患有 IDD 的成年人在镇静状态下接受了手术;年龄中位数为 26 岁,61% 与家人同住,81% 患有多种残疾。共有 197 例手术转介至 CDDH,包括免疫接种(61%)和口腔健康检查(23%),完成率为 98%。67%的手术使用了轻度(36人)和中度(95人)镇静剂。PMOC 正确预测了 91% 的镇静要求。与家人同住(OR 2.211,95% CI 1.001-4.885,p = 0.05)、免疫(OR 7.935,95% CI 4.025-15.644,p <0.001)和多重残疾(OR 3.064,95% CI 1.123-8.362,p = 0.029)分别与轻度、中度和高度镇静选择有关。 结论 提供个性化干预的护理模式可以帮助患有 IDD 的成年人接受预防性治疗。人口统计学变量可以预测镇静要求。更广泛地应用这种模式可以减少这一弱势群体中的健康不平等现象。
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引用次数: 0
期刊
Journal of Policy and Practice in Intellectual Disabilities
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