Journal of Applied Research in Intellectual Disabilities最新文献_第3页

Assistive Technology Uses and Barriers in the Home and Workplace for Adults With Intellectual and Developmental Disabilities 智力和发育障碍成人在家庭和工作场所的辅助技术使用和障碍。

IF 2.1 3区医学 Q2 PSYCHOLOGY, EDUCATIONAL

Journal of Applied Research in Intellectual Disabilities

Pub Date : 2024-10-27 DOI: 10.1111/jar.13306

Kristina N. Randall, Hannah Drew, Elizabeth S. Gilman, Emma Dixon

Background

Assistive technology (AT) has been successfully used by researchers and practitioners to increase task completion and independence in work and home environments for individuals with intellectual and developmental disabilities. While prior research has shown increased outcomes of incorporating AT into daily tasks, research has also indicated that actual use of AT in these settings is much lower.

Method

The current qualitative study used semi-structured interviews with a sample of 25 adults (22 individuals with intellectual and developmental disabilities and three job coaches) to examine the perceived use and implementation of AT into home and work environments, along with potential challenges and barriers. Interviews were analyzed using a thematic analysis approach.

Results

Three themes were identified: (1) technologies used to support daily living skills, (2) technologies used to support employment and (3) challenges and barriers to using technologies.

Conclusions

Findings indicate that while individuals with intellectual and developmental disabilities are using a variety of AT in their homes both successfully and independently, they have extremely limited use in their workplaces. Implications for practice and future research are discussed.

背景：辅助技术（AT）已被研究人员和从业人员成功用于提高智力和发育障碍人士在工作和家庭环境中的任务完成度和独立性。虽然先前的研究表明，将辅助技术融入日常任务会取得更好的效果，但研究也表明，在这些环境中，辅助技术的实际使用率要低得多：本次定性研究采用半结构式访谈的方式，对 25 名成年人（22 名智力和发育障碍人士和 3 名就业指导人员）进行抽样调查，以了解他们对在家庭和工作环境中使用和实施辅助器具的看法，以及潜在的挑战和障碍。采用主题分析方法对访谈进行了分析：结果：确定了三个主题：(1) 用于支持日常生活技能的技术；(2) 用于支持就业的技术；(3) 使用技术的挑战和障碍：研究结果表明，虽然智力和发育障碍人士在家中成功且独立地使用了各种辅助工具，但他们在工作场所的使用却极为有限。本文讨论了对实践和未来研究的影响。

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引用次数: 0

Feasibility, Experiences and Short-Term Outcomes on Challenging Behaviour and Well-Being of a Partially Online Music Intervention Pilot Study for Adults With Intellectual Disabilities 针对智障成人的部分在线音乐干预试点研究的可行性、经验以及对挑战行为和幸福感的短期影响。

IF 2.1 3区医学 Q2 PSYCHOLOGY, EDUCATIONAL

Journal of Applied Research in Intellectual Disabilities

Pub Date : 2024-10-24 DOI: 10.1111/jar.13314

Gerianne J. J. Smeets, Karin M. Volkers, Eline A. K. Swart, Xavier M. H. Moonen, Erik J. A. Scherder

Background

During the COVID-19 pandemic we implemented a partially online music intervention to examine the feasibility, experiences and short-term outcomes on the challenging behaviour and well-being of adults with intellectual disabilities.

Method

This mixed-methods study included 10 participants with mild or moderate intellectual disabilities who received 16 one-hour individual music sessions in 10 weeks, either face-to-face or online. Data on feasibility and experiences from participants and music workers were collected and analysed using inductive thematic analysis. Challenging behaviour and well-being were measured before and after intervention.

Results

Overall experiences were positive and concerned appreciation, positive feelings, musical abilities, attention span, relatedness and personalisation. Online experiences varied, but most participants preferred face-to-face over online sessions. After the intervention, challenging behaviour scores were better than before.

Conclusions

Engaging in a partially online music intervention is feasible for people with intellectual disabilities and seems to improve challenging behaviour. Experiences are discussed and recommendations for future online sessions are provided.

背景：在 COVID-19 大流行期间，我们实施了部分在线音乐干预措施，以研究其可行性、经验以及对智障成人挑战行为和福祉的短期影响：这项混合方法研究包括 10 名轻度或中度智障的参与者，他们在 10 周内接受了 16 次一小时的单独音乐课，可以是面对面授课，也可以是在线授课。研究收集了参与者和音乐工作者的可行性和经验数据，并采用归纳式主题分析法对其进行了分析。对干预前后的挑战行为和幸福感进行了测量：总体体验是积极的，涉及欣赏、积极情绪、音乐能力、注意力、亲和力和个性化。在线体验各不相同，但大多数参与者更喜欢面对面而不是在线课程。干预后，挑战行为的得分比干预前有所提高：参与部分在线音乐干预对智障人士来说是可行的，而且似乎可以改善挑战行为。本文讨论了相关经验，并对未来的在线课程提出了建议。

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引用次数: 0

Stress, Anxiety and Coping in Adults With Down Syndrome: An Exploratory Co-Research Study 唐氏综合症成人的压力、焦虑与应对：一项探索性合作研究。

IF 2.1 3区医学 Q2 PSYCHOLOGY, EDUCATIONAL

Journal of Applied Research in Intellectual Disabilities

Pub Date : 2024-10-24 DOI: 10.1111/jar.13311

Ashley Scott, Ryan Gould, Liam Quidore, Keryden Koeut-Futch, Emily Bock, Prisha Sujin Kumar, Staci Christensen, Augusta Edouard, Benjamin Golden, Eden Rapp, Kaethe Sigelko, Alexis Sokoloff, Caley Versfelt, Eric Rubenstein

Background

At least half of children and adults with Down syndrome have a major mental health concern during their life but few studies ask people with Down syndrome directly about their experience. We used a co-research model to explore anxiety, stress, and coping in adults with Down syndrome.

Methods

Our group of researchers and adults with Down syndrome conducted an online survey on mental health for adults with Down syndrome. We analysed quantitative data and thematically grouped coping mechanisms.

Results

Sixty adults with Down syndrome completed the survey, mean age was 30 years, and 55% of respondents had some employment. Approximately 80% of respondents reported experiencing stress and 75% reported experiencing anxiety. Employed respondents were more likely to use social coping mechanisms.

Conclusion

Soliciting responses from adults with Down syndrome about their mental health can provide valuable insights. Mental health is a concern for people with Down syndrome that should be addressed.

背景：至少有一半患有唐氏综合症的儿童和成人在其一生中会有重大的心理健康问题，但很少有研究直接询问唐氏综合症患者的经历。我们采用共同研究的模式来探讨唐氏综合症成人的焦虑、压力和应对方法：我们的研究小组和成年唐氏综合症患者共同开展了一项关于成年唐氏综合症患者心理健康的在线调查。我们对定量数据进行了分析，并对应对机制进行了主题分组：60名患有唐氏综合症的成年人完成了调查，平均年龄为30岁，55%的受访者有工作。约 80% 的受访者表示有压力，75% 的受访者表示有焦虑。有工作的受访者更倾向于使用社会应对机制：向患有唐氏综合症的成年人征询有关其心理健康的意见可以提供有价值的见解。心理健康是唐氏综合症患者应该关注的问题。

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引用次数: 0

Mental Health Services for Adults With Intellectual Disabilities: A Qualitative Study of Patient Characteristics, Associated Factors and Consequent Needs for Adaptation in Assessment and Treatment 为智障成人提供的心理健康服务：对患者特征、相关因素及评估和治疗中的相应适应需求的定性研究。

IF 2.1 3区医学 Q2 PSYCHOLOGY, EDUCATIONAL

Journal of Applied Research in Intellectual Disabilities

Pub Date : 2024-10-24 DOI: 10.1111/jar.13315

Kjersti Karlsen, Ellen Kathrine Munkhaugen, Hanne Kari Fossum, Trine Lise Bakken, Arvid Nikolai Kildahl

Background

Individuals with intellectual disabilities are at increased risk of mental health disorders, but may struggle to access appropriate services. While assessment/treatment may need to be adapted, knowledge is limited about what such adaptations may entail.

Method

During a service development project, the participants (33 professionals, 13 family members) were asked to identify the characteristics/associated factors of individuals with intellectual disabilities and co-occurring mental health disorders. Using thematic analysis, 1103 participant responses were analyzed to identify the needs for adaptation in assessment/treatment.

Results

Three core themes were identified: (1) A broader assessment: Gaining an accurate and comprehensive understanding of the individual's history, abilities and difficulties, (2) Adjusting/modifying existing treatment strategies, (3) Ensuring that the individual's day-to-day needs are met.

Conclusions

According to the participants, assessment/treatment of mental health disorder in this population requires more time and broader assessments are necessary. Family/caregiver involvement and cross-service organisation/collaboration represent other important adaptations.

背景：智障人士罹患精神疾病的风险较高，但他们可能很难获得适当的服务。虽然可能需要对评估/治疗进行调整，但人们对这种调整可能带来的影响了解有限：在一个服务开发项目中，参与者（33 位专业人士，13 位家庭成员）被要求识别智障人士和并发精神障碍患者的特征/相关因素。利用主题分析法，对 1103 份参与者回复进行了分析，以确定评估/治疗中的适应需求：结果：确定了三个核心主题：(1) 更广泛的评估：结果：确定了三个核心主题：（1）更广泛的评估：准确、全面地了解患者的病史、能力和困难；（2）调整/修改现有的治疗策略；（3）确保满足患者的日常需求：结论：与会者认为，对这一人群的心理健康障碍进行评估/治疗需要更多的时间，而且有必要进行更广泛的评估。家庭/照顾者的参与和跨服务组织/合作是其他重要的适应措施。

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引用次数: 0

‘It's Got Its Ups and Downs’: What People With Intellectual Disabilities Living in Supported Living and Residential Care Like and Dislike About Their Home 有喜有忧"：住在辅助生活和寄宿护理机构的智障人士对自己家的喜恶。

IF 2.1 3区医学 Q2 PSYCHOLOGY, EDUCATIONAL

Journal of Applied Research in Intellectual Disabilities

Pub Date : 2024-10-24 DOI: 10.1111/jar.13313

Francesca Ribenfors, Lauren Blood, Chris Hatton, Anna Marriott

Background

Given the current sociopolitical climate, people with intellectual disabilities are spending more time at home. Much housing-related research focuses on informant-completed measures and quantifiable outcomes. By contrast, this article explores the perspectives of adults with intellectual disabilities concerning what they liked or disliked about their homes.

Method

Data is drawn from 53 semi-structured interviews with people with intellectual disabilities in supported living or residential care in England.

Results

Three themes were generated: space and place; people make or break a home; and day-to-day autonomy. These highlight the importance of belonging and the significance of other people in the creation of ‘home’.

Conclusion

If people are to flourish, attention must be paid to aspects of the home that provide comfort, enjoyment, and a sense of belonging. These findings can benefit professionals, family members and people with intellectual disabilities, when considering current or future living arrangements.

背景：鉴于当前的社会政治环境，智障人士在家的时间越来越多。许多与住房有关的研究都侧重于由信息提供者完成的测量和可量化的结果。与此相反，本文探讨了智障成年人对其居所的喜恶看法：数据来自 53 个半结构化访谈，访谈对象是在英格兰接受辅助生活或寄宿护理的智障人士：结果：产生了三个主题：空间和场所；人决定家的好坏；日常自主。这些主题突出了归属感的重要性以及其他人在创建 "家 "过程中的重要性：结论：要想让人们茁壮成长，就必须关注家庭中能给人带来舒适、愉悦和归属感的方面。专业人士、家庭成员和智障人士在考虑当前或未来的居住安排时，可以从这些研究结果中受益。

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引用次数: 0

Physical Activity, Sedentary Behaviour, Sleep and Mental Wellbeing in Family Caregivers of Adults With Intellectual and/or Developmental Disabilities 智力和/或发育障碍成人家庭照顾者的体育活动、久坐行为、睡眠和心理健康。

IF 2.1 3区医学 Q2 PSYCHOLOGY, EDUCATIONAL

Journal of Applied Research in Intellectual Disabilities

Pub Date : 2024-10-23 DOI: 10.1111/jar.13310

Laura C. Koch, Yona Lunsky, Laura St. John

Background

Canadian 24-h movement guidelines recommend that adults achieve 150 min per week of moderate-to-vigorous physical activity (MVPA), 7–9 h of sleep per night and spend no more than 8-h per day sedentary to optimise health and wellbeing.

Method

Using a cross-sectional survey of 131 family caregivers of adults with intellectual and developmental disabilities, we aimed to (a) determine whether adherence to these guidelines predicts mental wellbeing in family caregivers and (b) explore the relationship between movement behaviours of family caregivers and their loved ones.

Results

While MVPA was found to weakly predict wellbeing, sleep and sedentary behaviour did not. The movement behaviours of the family caregivers were not closely related to that of their loved ones.

Conclusions

Fostering physical activity is important to promote the wellbeing of adults with intellectual and developmental disabilities, as well as their family caregivers. Opportunities to be active together may be even more beneficial.

背景：加拿大 24 小时运动指南建议成年人每周进行 150 分钟的中度至高强度体育活动 (MVPA)，每晚睡 7-9 小时，每天久坐时间不超过 8 小时，以优化健康和福祉：我们对 131 名智力和发育障碍成人的家庭照顾者进行了横断面调查，目的是：（a）确定遵守这些指导方针是否能预测家庭照顾者的精神健康状况；（b）探讨家庭照顾者的运动行为与其亲人之间的关系：结果：发现 MVPA 对心理健康的预测作用较弱，而睡眠和久坐行为则不然。家庭照顾者的运动行为与其亲人的运动行为关系并不密切：促进体育锻炼对于提高智力和发育障碍成人及其家庭照顾者的幸福感非常重要。共同参与体育锻炼的机会可能更加有益。

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引用次数: 0

A Scoping Review of Outcomes Measured and Involvement of People With Intellectual Disabilities in Active Support Research 智障人士积极支持研究的成果衡量与参与范围综述

IF 2.1 3区医学 Q2 PSYCHOLOGY, EDUCATIONAL

Journal of Applied Research in Intellectual Disabilities

Pub Date : 2024-10-13 DOI: 10.1111/jar.13309

Jenny Aspling, Veronica Svärd, Lincoln Humphreys, Christine Bigby, Magnus Tideman

Background

Active Support is a staff practice that aims to increase engagement of people with intellectual disabilities. This study seeks to: (1) identify the outcomes of staff using Active Support and how these are measured; (2) identify how the views of people with intellectual disabilities have been included in Active Support research.

Method

A scoping review was conducted of peer-reviewed articles about Active Support published between 2009 and 2023.

Results

Sixteen articles were identified. Outcomes included engagement, the quality of staff support, choice and challenging behaviour. Structured observations were the most frequently used measurement method. Only two studies explored people with intellectual disabilities' perspectives about Active Support.

Conclusions

Consistent use of similar measures is a strength of Active Support research. Including perspectives of people with intellectual disabilities may provide insight into dimensions of support not been measured and assist in further developing these measures and Active Support practice.

背景积极支持是一种旨在提高智障人士参与度的员工实践活动。本研究旨在：(1) 确定工作人员使用积极支持的成果，以及如何对这些成果进行衡量；(2) 确定智障人士的意见如何被纳入积极支持研究。方法对 2009 年至 2023 年间发表的有关主动支持的同行评审文章进行范围界定。结果确定了 16 篇文章。研究结果包括参与度、员工支持质量、选择和挑战行为。结构化观察是最常用的测量方法。只有两篇研究探讨了智障人士对积极支持的看法。结论持续使用类似的测量方法是积极支持研究的一个优势。将智障人士的观点纳入其中，可以深入了解尚未测量的支持层面，有助于进一步发展这些测量方法和积极支持实践。

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引用次数: 0

Parent Perspectives on Parent-Mediated Intervention for Young Children With Down Syndrome 家长对以家长为主导的唐氏综合症幼儿干预措施的看法。

IF 2.1 3区医学 Q2 PSYCHOLOGY, EDUCATIONAL

Journal of Applied Research in Intellectual Disabilities

Pub Date : 2024-10-08 DOI: 10.1111/jar.13307

Madison M. Walsh, Kaylyn Van Deusen, Miranda E. Pinks, Benedetta Ceci, Susan Hepburn, Nathanial R. Riggs, Francesca Pulina, Chiara Marcolin, Sara Onnivello, Sara Colaianni, Bethany Gray, Lisa A. Daunhauer, Silvia Lanfranchi, Deborah J. Fidler

Background

Parent-mediated intervention (PMI) is a potentially scalable approach for tailored interventions in neurogenetic conditions like Down syndrome (DS). Because PMIs require ongoing parent engagement, they must be developed in alignment with the needs of intended users. The present study examined caregiver opinions and preferences to inform the development of syndrome-informed interventions for children with DS.

Method

Parents of children with DS (n = 34) participated in focus groups discussing PMI. Interviews were transcribed and a thematic analysis was applied to code the data.

Results

Three themes were identified: advantages of PMI, disadvantages of PMI and preferred features of PMI. To align with parent preferences, future PMIs for children with DS should require a brief time commitment, blend intervention activities into daily routines and include family members in activities.

Conclusions

Findings have implications for developing novel interventions to support early development in children with DS and other neurogenetic conditions.

背景：以家长为媒介的干预（PMI）是对唐氏综合症（DS）等神经遗传疾病进行定制干预的一种潜在的可扩展方法。由于家长干预需要家长的持续参与，因此必须根据目标用户的需求来开发。本研究调查了照顾者的意见和偏好，为开发针对唐氏综合症儿童的综合症干预措施提供参考：DS儿童的家长（n = 34）参加了讨论PMI的焦点小组。对访谈内容进行转录，并采用主题分析法对数据进行编码：结果：确定了三个主题：儿童智能教育的优点、儿童智能教育的缺点和儿童智能教育的首选功能。为了与家长的偏好保持一致，未来针对 DS 儿童的项目管理应只需要很短的时间，将干预活动融入日常活动中，并让家庭成员参与到活动中：研究结果对开发新型干预措施以支持 DS 儿童和其他神经遗传疾病儿童的早期发展具有重要意义。

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引用次数: 0

Discovering the Current ‘State of Play’ in Pain Recognition and Assessment for People With Profound Intellectual Disabilities by Nurses: An Appreciative Inquiry Approach 发现当前护士识别和评估重度智障人士疼痛的 "现状"：欣赏式探究方法

IF 2.1 3区医学 Q2 PSYCHOLOGY, EDUCATIONAL

Journal of Applied Research in Intellectual Disabilities

Pub Date : 2024-10-06 DOI: 10.1111/jar.13305

Maeve Goodall, Kate Irving, Mary Nevin

Background

Pain recognition and assessment in individuals with profound intellectual disabilities are challenging. Exploring effective methods of addressing this is essential. This study aims to discover current nursing practice in this area of care as the first of a four-phased appreciative inquiry study, to inform further research and practice.

Methods

Data from individual and focus group interviews with co-researching nurses were collated and developed into themes.

Results

Six themes were identified: unconditional positive regard, honouring of relationship, creative best practice, pain through a competing lens, accurate assessment—an impossible task? Medicating pain—oversimplified and undervalued?

Conclusion

Relationship is essential, in recognising pain and distress. There is an understanding of the multifaceted nature of pain in the care of this population; however, physical pain recognition and assessment are prioritised, to prevent serious ill health and death. Formal methods of assessment and communication between professionals are needed.

背景深度智障人士的疼痛识别和评估具有挑战性。探索解决这一问题的有效方法至关重要。本研究旨在发现当前在这一护理领域的护理实践，作为四阶段欣赏式探究研究的第一阶段，为进一步的研究和实践提供信息：方法：整理共同研究护士的个人访谈和焦点小组访谈数据，并将其发展为主题：结果：确定了六个主题：无条件的积极关注、尊重关系、创造性的最佳实践、通过竞争视角看待疼痛、准确评估--不可能完成的任务？对疼痛进行药物治疗--过于简单化且价值被低估？在识别疼痛和痛苦时，人际关系至关重要。在对这一人群的护理中，我们了解疼痛的多面性；然而，身体疼痛的识别和评估是优先事项，以防止严重的健康问题和死亡。专业人员之间需要正式的评估和沟通方法。

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引用次数: 0

Social Workers' Experiences of Working With Support Workers in Services for Adults With Intellectual Disabilities in Hong Kong 香港智障成人服务机构中社工与辅助人员的合作经验》（Social Workers' Experiences of Working With Support Workers in Services for Adults With Intellectual Disabilities in Hong Kong）。

IF 2.1 3区医学 Q2 PSYCHOLOGY, EDUCATIONAL

Journal of Applied Research in Intellectual Disabilities

Pub Date : 2024-10-06 DOI: 10.1111/jar.13301

Kangwei Xun, Ruoshui Jiao, Yunxue Deng

Background

Services for adults with intellectual disabilities in Hong Kong have a hierarchical staffing structure. Professional social workers, who performed as mid-level employees, work with frontline support workers to deliver services to clients.

Methods

This qualitative study explored social workers' experiences of working with support workers through in-depth interviews with 13 participants.

Findings

The study revealed that social workers perceived a significant variation between themselves and support workers in terms of working motivation, values and attitudes towards clients with intellectual disabilities. Despite the hierarchical relationships, social workers and support workers share the power of service decision-making. Social workers used firm and gentle approaches to facilitate changes in practices to uphold service values. These findings were compared with Western literature on this topic, indicating similarities and differences.

Conclusion

The organisations need to facilitate an effective collaboration between social workers and support workers to enhance the quality of services for adults with intellectual disabilities in Hong Kong.

背景：在香港，为成年智障人士提供的服务采用等级森严的人员结构。作为中层雇员的专业社工与前线支援人员合作，为服务对象提供服务：这项定性研究通过对 13 名参与者进行深入访谈，探讨了社工与辅助人员合作的经验：研究结果显示，社工认为自己与辅助人员在工作动机、价值观和对智障服务对象的态度方面存在显著差异。尽管存在等级关系，但社工和辅助人员共享服务决策权。社工采用坚定而温和的方式促进服务实践的改变，以维护服务价值。这些研究结果与西方有关该主题的文献进行了比较，显示了两者的异同：机构需要促进社工与支援工作者之间的有效合作，以提高香港智障成人服务的质量。

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引用次数: 0