coproduction

联产
  • 文章类型: Journal Article
    目的:患有失语症(语言/沟通障碍)的卒中幸存者结局不佳,最佳实践的临床实施存在差距。鲜为人知,然而,关于言语病理学家对临床护理路径中对服务交付影响最大的接触点(塑造经验的关键时刻)的看法,以及这种情况如何因地理位置而异。我们探索了提供失语症服务的言语病理学家的经验,以确定改进和设计的优先事项。
    方法:这是基于经验的协同设计(EBCD)项目的初始经验收集和优先识别阶段。来自昆士兰州21个地理位置不同的医院和卫生服务机构的言语病理学家,澳大利亚。言语病理学家在急性工作,康复和社区服务在访谈和焦点小组中分享了提供失语症护理的积极和消极经验。使用定性主题分析对经验数据进行分析,以确定接触点。使用适应的标称组技术确定了服务设计的优先级。
    结果:言语病理学家(n=62)参加了16个焦点小组和9次访谈,分享了132次失语症护理的经验。在对失语症影响认识不足的团队中提供护理被认为是一项关键挑战,因为患者-提供者沟通不良被认为会增加患者不良结局的风险.言语病理学家确定了与自己的专业需求相关的需要改进的领域(例如,更容易获得临床监督);协作医疗保健(例如,更好的协调和跨学科护理,以增加治疗时间);以及服务背景和环境(例如,能够支持不同沟通需求的心理服务)。
    结论:言语病理学家提供的失语症服务可以通过增加临床监督来改善,同伴汇报和跨学科护理的机会。服务设计的优先事项因地理位置而异,包括:支持护理过渡的教育(偏远地区),改善转诊途径和服务联系(区域区域)和专门的失语症人员(大都市)。
    由失语症患者组成的消费者咨询委员会(n=3,作者K.M.,K.D.andB.A.),他们的重要其他人(n=2,作者J.D.和P.M.),文化能力官员(作者G.B.)指导了这项研究。该小组:(1)审查了参与者的信息;(2)共同设计的调查和研讨会资源;(3)共同提出的研究成果并为出版物做出了贡献。研究问题和研究设计(例如,分析方法和评估措施)由研究小组开发(作者洛杉矶,V.J.P.,D.A.C.和S.J.W.)。
    OBJECTIVE: Stroke survivors with aphasia (impaired language/communication) have poor outcomes and gaps in the clinical implementation of best practice contribute to this. Little is known, however, about speech pathologist perspectives on the touchpoints (key moments shaping experiences) in the clinical care pathway that have the greatest impact on service delivery nor how this varies by geographical location. We explored the experiences of speech pathologists who provide aphasia services to establish priorities for improvement and design.
    METHODS: This is the initial experience gathering and priority identification stage of an experience-based co-design (EBCD) project. Speech pathologists were recruited from 21 geographically diverse Hospital and Health Services in Queensland, Australia. Speech pathologists working in acute, rehabilitation and community services shared positive and negative experiences of delivering aphasia care in interviews and focus groups. Experiential data were analysed using qualitative thematic analysis to determine touchpoints. Priorities for service design were identified using an adapted nominal group technique.
    RESULTS: Speech pathologists (n = 62) participated in 16 focus groups and nine interviews and shared 132 experiences of delivering aphasia care. Providing care in teams with poor awareness of the impacts of aphasia was identified as a key challenge, as poor patient-provider communication was perceived to increase risk of adverse outcomes for patients. Speech pathologists identified areas for improvement related to their own professional needs (e.g., greater access to clinical supervision); collaborative health care (e.g., better coordination and interdisciplinary care to increase therapy time); and the service context and environment (e.g., psychological services able to support diverse communication needs).
    CONCLUSIONS: Speech pathologist delivery of aphasia services could be improved through increased access to clinical supervision, opportunities for peer debriefing and interdisciplinary care. Priorities for service design varied by geographical location and included: education to support care transitions (remote areas), improved referral pathways and service linkage (regional areas) and dedicated aphasia staffing (metropolitan areas).
    UNASSIGNED: A consumer advisory committee comprising people with aphasia (n = 3, authors K.M., K.D. and B.A.), their significant others (n = 2, authors J.D. and P.M.), and a Cultural Capability Officer (author G.B.) guided this research. The team: (1) reviewed participant information; (2) co-designed surveys and workshop resources; (3) copresented research outcomes and contributed to publications. Research questions and study design (e.g., analysis methods and assessment measures) were developed by the research team (authors L.A., V.J.P., D.A.C. and S.J.W.).
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  • 文章类型: Journal Article
    背景:在英国,由于越来越多的年轻人遇到心理健康方面的困难,年轻人(16-25岁)的心理健康问题在公众健康方面日益受到关注,许多人与心理健康服务没有联系。设计满足所有年轻人需求的服务,各种各样的年轻人必须参与心理健康研究,超越参与者。这项Delphi研究旨在识别不同类型的“参与”,并定义和描述年轻人参与心理健康研究的“代表性不足”。
    方法:27位青少年心理健康研究专家完成了一系列在线问卷调查。专家是学术研究人员,患者和公众参与(PPI)专业人员和年轻的“经验专家”。第1轮产生了小组成员\'对\'参与\'和\'代表性不足\'的看法。第2轮总结了第1轮小组成员的答复,并在9个问题领域寻求共识(至少70%同意)。第3轮验证了前几轮的调查结果。
    结果:在9个领域中的8个领域达成了共识,导致不同类型的年轻人参与心理健康研究的矩阵(有定义),从顾问到参与大使。调查结果产生了一个商定的代表性不足的定义,确定在研究过程中何时存在代表性不足以及代表性不足的年轻人的特征。专家们进一步商定了应收集的人口统计数据,以改善参与情况的报告。
    结论:通过专家共识,这项研究增加了我们对年轻人心理健康研究背景下的参与和代表性不足的理解。它为考虑让年轻人参与研究过程的研究人员提供了实用资源,并提出了应收集的数据,以改善有关年轻人多样性的报告。
    一个由五名年轻人组成的研究监督小组为这项研究提供了建议。他们在整个项目中做出了贡献-从认可研究问题到评论研究结果和传播。其中两个小组审查了所有参与者的材料,并试行了初始问卷。
    BACKGROUND: The mental health of young people (aged 16-25 years) is a growing public health concern in the United Kingdom due to the increasing numbers of young people experiencing mental health difficulties, with many not in contact with mental health services. To design services that meet the needs of all young people, a diversity of young people must be involved in mental health research, beyond being participants. This Delphi study aimed to identify different types of \'involvement\' and to define and describe \'under-representation\' in young people\'s involvement in mental health research.
    METHODS: Twenty-seven experts in young people\'s mental health research completed a series of online questionnaires. The experts were academic researchers, patient and public involvement (PPI) professionals and young \'experts by experience\'. Round 1 generated panellists\' views on \'involvement\' and \'under-representation\'. Round 2 summarised panellists\' responses from Round 1 and sought consensus (minimum 70% agreement) in nine question areas. Round 3 validated the findings of the previous rounds.
    RESULTS: Consensus was achieved in eight out of nine areas, resulting in a matrix (with definitions) of the different types of young people\'s involvement in mental health research, from being advisors to involvement ambassadors. The findings generated an agreed-upon definition of under-representation, an identification of when in the research process there is under-representation and the characteristics of the young people who are under-represented. Experts further agreed on demographic data that should be collected to improve reporting on involvement.
    CONCLUSIONS: This study adds to our understanding of involvement and under-representation in the context of young people\'s mental health research through expert consensus. It provides a practical resource for researchers considering involving young people in the research process and suggests the data that should be collected to improve reporting on the diversity of the young people involved.
    UNASSIGNED: A research oversight group of five young people advised on this study. They contributed throughout the project-from endorsing the research question to commenting on the findings and dissemination. Two of the group reviewed all participant materials and piloted the initial questionnaire.
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  • 文章类型: Journal Article
    背景:自我伤害在青少年中很常见,是一个主要的公共卫生问题。学校工作人员可能是第一个注意到年轻人的自我伤害的成年人,并有能力提供支持或路标学生帮助。然而,学校工作人员经常报告说,他们不觉得有能力或有信心支持学生。尽管有需要,学校工作人员缺乏基于证据的自我伤害培训。基于网络的培训计划将为学校提供一种灵活且具有成本效益的方法,以增加员工知识,技能,以及如何应对自残学生的信心。
    目的:本研究的主要目的是为学校教职员工共同制定一个基于证据的培训计划,以提高他们应对自残学生的技能和信心(对自残的支持性反应[SORTS])。本文介绍了与利益相关者共同制作的初始原型的设计和开发过程,以确保干预满足他们的要求。
    方法:使用以用户为中心的设计和以人为本的方法,SORTS原型由(1)研究文献综述,现有准则,和政策;(2)与技术提供者和主题专家(心理健康,教育,和自我伤害);(3)与年轻人的焦点小组的发现;(4)与学校工作人员的联合制作讲习班。采用框架法进行专题分析。
    结果:与专家和技术提供商的共同制作会议使我们能够制作培训内容的草稿,线框,和示例高保真用户界面设计。对焦点小组和讲习班的分析产生了四个关键主题:(1)培训计划的需求;(2)可接受性,实用性,和实施;(3)设计,内容,和导航;以及(4)调整和改进。调查结果表明,学校显然需要一个基于网络的自我伤害培训计划,提出的方案内容和设计是有用的,实用,并且可以接受。与利益相关者的协商为原型的迭代开发提供了信息。
    结论:SORTS是一项基于网络的培训计划,旨在为学校工作人员提供基于研究证据并与利益相关者合作开发的自我伤害学生做出适当的反应。SORTS计划将为学校工作人员提供技能和策略,以支持性的方式应对自我伤害的学生,并鼓励学校采用全校方法进行自我伤害。需要进一步的研究来完成基于本研究反馈的干预措施开发,并评估该计划的有效性。如果发现有效,SORTS计划可以在学校和其他青年组织中实施。
    BACKGROUND: Self-harm is common among adolescents and is a major public health concern. School staff may be the first adults to notice a young person\'s self-harm and are well placed to provide support or signpost students to help. However, school staff often report that they do not feel equipped or confident to support students. Despite the need, there is a lack of evidence-based training about self-harm for school staff. A web-based training program would provide schools with a flexible and cost-effective method of increasing staff knowledge, skills, and confidence in how to respond to students who self-harm.
    OBJECTIVE: The main objective of this study was to coproduce an evidence-based training program for school staff to improve their skills and confidence in responding to students who self-harm (Supportive Response to Self-Harm [SORTS]). This paper describes the design and development process of an initial prototype coproduced with stakeholders to ensure that the intervention meets their requirements.
    METHODS: Using a user-centered design and person-based approach, the SORTS prototype was informed by (1) a review of research literature, existing guidelines, and policies; (2) coproduction discussions with the technical provider and subject matter experts (mental health, education, and self-harm); (3) findings from focus groups with young people; and (4) coproduction workshops with school staff. Thematic analysis using the framework method was applied.
    RESULTS: Coproduction sessions with experts and the technical provider enabled us to produce a draft of the training content, a wireframe, and example high-fidelity user interface designs. Analysis of focus groups and workshops generated four key themes: (1) need for a training program; (2) acceptability, practicality, and implementation; (3) design, content, and navigation; and (4) adaptations and improvements. The findings showed that there is a clear need for a web-based training program about self-harm in schools, and the proposed program content and design were useful, practical, and acceptable. Consultations with stakeholders informed the iterative development of the prototype.
    CONCLUSIONS: SORTS is a web-based training program for school staff to appropriately respond to students who self-harm that is based on research evidence and developed in collaboration with stakeholders. The SORTS program will equip school staff with the skills and strategies to respond in a supportive way to students who self-harm and encourage schools to adopt a whole-school approach to self-harm. Further research is needed to complete the intervention development based on the feedback from this study and evaluate the program\'s effectiveness. If found to be effective, the SORTS program could be implemented in schools and other youth organizations.
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  • 文章类型: Journal Article
    背景:寻找令人愉悦且有效的长期康复方法来改善多发性硬化症(MS)患者的上肢(UL)功能具有挑战性。使用虚拟现实(VR)可能是解决这一挑战的一种方法;然而,缺乏关于MS患者和临床医生对基于VR的康复游戏方法和建议的看法的报道。
    目的:本研究旨在确定MS患者常见的UL问题及其相关的当前治疗方法,并探索MS和临床专家对VR的看法,为VR游戏的开发和设计提供建议。
    方法:对MS患者进行单独的焦点小组,通过英国MS协会的研究网络招募,和临床医生,通过MS网络中的MS信任治疗师招募。共有10名MS患者(2个焦点小组)和8名临床医生(5名物理治疗师,2名职业治疗师,和2个焦点组中的1名MS护士)参与其中。记录焦点组,并使用基于主题的内容分析对转录进行分析。
    结果:MS患者通常报告说,他们的UL问题干扰了日常生活活动,并导致了有意义的爱好(如写作)的丧失。许多MS患者忽略了UL锻炼,并找到了适应UL损伤的策略。同样,临床医生表示,UL康复在他们的服务范围内被忽视,寻找有趣的治疗策略具有挑战性.两个参与者团体都建议VR作为解决方案,因为MS患者可以方便地进入,并且可以提供一种更具吸引力和变相的锻炼方法。人们对网络疾病和使用VR方法的脱离感到共同的担忧。两组都认为游戏应该对用户有意义和适应性,但建议进行不同的VR活动。临床医生建议游戏直接反映日常生活活动,MS患者建议更抽象的活动。
    结论:VR得到MS患者和临床医生的认可。针对VR康复游戏的开发提出了建议,这些游戏是个性化的,可针对MS患者的不同能力进行定制。
    BACKGROUND: Finding enjoyable and effective long-term approaches to rehabilitation for improving the upper limb (UL) function of people with multiple sclerosis (MS) is challenging. Using virtual reality (VR) could be a solution to this challenge; however, there is a lack of reporting on the views of people with MS and clinicians on VR-based approaches and recommendations for games for rehabilitation.
    OBJECTIVE: This study aims to identify common UL problems and their related current therapeutic approaches for people with MS, and to explore the opinions of people with MS and specialist clinicians on VR and obtain suggestions for the development and design of VR games.
    METHODS: Separate focus groups were conducted with people with MS, recruited through the MS Society UK\'s research network, and clinicians, recruited through the MS Trust Therapists in MS network. A total of 10 people with MS (2 focus groups) and 8 clinicians (5 physiotherapists, 2 occupational therapists, and 1 MS nurse in 2 focus groups) were involved. The focus groups were recorded and transcriptions were analyzed using theme-based content analysis.
    RESULTS: People with MS commonly reported that their UL problems interfered with activities of daily living and resulted in the loss of meaningful hobbies such as writing. Many people with MS neglected UL exercise and found strategies for adapting to the UL impairments. Similarly, clinicians stated UL rehabilitation was neglected within their service and that it was challenging to find interesting treatment strategies. VR was suggested by both participant groups as a solution, as it was convenient for people with MS to access and it could provide a more engaging and disguised approach to exercise. There were shared concerns with cybersickness and disengagement with using VR approaches. Both groups agreed games should be meaningful and adaptable for users but suggested different VR activities, with clinicians suggesting games directly reflecting activities of daily living and people with MS suggesting more abstract activities.
    CONCLUSIONS: VR was well received by both people with MS and clinicians for UL rehabilitation. Recommendations were made for the development of VR rehabilitation games which are personalized and customizable for the varying abilities of people with MS.
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  • 文章类型: Journal Article
    这种观点来自2021年虚拟研讨会发起的生态学家之间正在进行的对话。一个跨学科的研究人员和实践者小组得出结论,城市生态学作为一门科学可以通过关注关系来更好地促进积极的未来,而不是优先考虑城市结构。来自其他关系学科的见解,比如政治生态,治理,城市设计,保护也有贡献。鉴于需要迅速适应全球城市系统不断变化的社会和生物物理驱动因素,关系尤其强大。与传统的结构问题相比,通过关系透镜可以更好地理解这些前所未有的动态。我们使用三种共同生产的社会生态世界,科学,以及可操作的知识-确定城市地区共同生产的关键过程。连通性对关系型城市生态至关重要。本文的共同探索产生了八个主题,并指出了改善城市未来生活和环境的社会行动。
    This perspective emerged from ongoing dialogue among ecologists initiated by a virtual workshop in 2021. A transdisciplinary group of researchers and practitioners conclude that urban ecology as a science can better contribute to positive futures by focusing on relationships, rather than prioritizing urban structures. Insights from other relational disciplines, such as political ecology, governance, urban design, and conservation also contribute. Relationality is especially powerful given the need to rapidly adapt to the changing social and biophysical drivers of global urban systems. These unprecedented dynamics are better understood through a relational lens than traditional structural questions. We use three kinds of coproduction-of the social-ecological world, of science, and of actionable knowledge-to identify key processes of coproduction within urban places. Connectivity is crucial to relational urban ecology. Eight themes emerge from the joint explorations of the paper and point toward social action for improving life and environment in urban futures.
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  • 文章类型: Journal Article
    背景:联合生产的创新正在塑造世界各地不同背景下的公共服务改革。虽然许多创新是本地的,其他人随着时间的推移而扩大和发展。我们知道的很少,然而,关于联合生产的实施和演变过程。这项研究的目的是探索采用,实施和吸收三种与结构弱势群体共同生产公共服务的方法。
    方法:我们对涉及弱势群体的三个联合生产的公共服务创新进行了为期4年的纵向多案例研究(2019-2023年):延雪平地区的ESTHER,瑞典涉及具有多种复杂需求的人(案例1);在邓迪实现恢复,苏格兰有严重精神疾病的人(案例2);和曼尼托巴省的学习中心,加拿大(案例3),还涉及患有严重精神疾病的人。数据来源包括对战略决策者的14次访谈和文件分析,以了解与每个案例有关的历史和环境因素。三个框架为案例研究协议提供了信息,半结构化面试指南,数据提取,演绎编码与分析:实施研究的综合框架,创新模型的扩散与Lozeau理解同化的兼容性差距。
    结果:采用涉及结构脆弱人群的共同生产是案例1和案例3中现有改进工作的显着演变,同时由外部变更机构推动,社区组织之间现有的合作努力,在案例2中,有机会告知新的市政精神卫生政策引发了采用。在所有情况下,共同生产的创新围绕着一个中心理念,重视生活经验与共同生产过程中的专业知识。这种哲学取向为当地环境提供了灵活性和适应性,因此,与更多定义的编程相比,便于实现。据告密者说,避免合作风险的努力取得了成功,导致新思维方式和共同生产过程的同化,并举例说明了这是如何导致变革性变化的。
    结论:在探索与结构脆弱群体共同生产的创新时,我们的研究结果提出了在应用现有理论框架时需要考虑的几个额外因素.这些包括创新的哲学性质,需要研究创新本身随着时间的推移而演变的过程,更多关注合作过程作为现有权力结构的破坏者,并强调推动组织文化的转型变革。
    BACKGROUND: Innovations in coproduction are shaping public service reform in diverse contexts around the world. Although many innovations are local, others have expanded and evolved over time. We know very little, however, about the process of implementation and evolution of coproduction. The purpose of this study was to explore the adoption, implementation and assimilation of three approaches to the coproduction of public services with structurally vulnerable groups.
    METHODS: We conducted a 4 year longitudinal multiple case study (2019-2023) of three coproduced public service innovations involving vulnerable populations: ESTHER in Jönköping Region, Sweden involving people with multiple complex needs (Case 1); Making Recovery Real in Dundee, Scotland with people who have serious mental illness (Case 2); and Learning Centres in Manitoba, Canada (Case 3), also involving people with serious mental illness. Data sources included 14 interviews with strategic decision-makers and a document analysis to understand the history and contextual factors relating to each case. Three frameworks informed the case study protocol, semi-structured interview guides, data extraction, deductive coding and analysis: the Consolidated Framework for Implementation Research, the Diffusion of Innovation model and Lozeau\'s Compatibility Gaps to understand assimilation.
    RESULTS: The adoption of coproduction involving structurally vulnerable populations was a notable evolution of existing improvement efforts in Cases 1 and 3, while impetus by an external change agency, existing collaborative efforts among community organizations, and the opportunity to inform a new municipal mental health policy sparked adoption in Case 2. In all cases, coproduced innovation centred around a central philosophy that valued lived experience on an equal basis with professional knowledge in coproduction processes. This philosophical orientation offered flexibility and adaptability to local contexts, thereby facilitating implementation when compared with more defined programming. According to the informants, efforts to avoid co-optation risks were successful, resulting in the assimilation of new mindsets and coproduction processes, with examples of how this had led to transformative change.
    CONCLUSIONS: In exploring innovations in coproduction with structurally vulnerable groups, our findings suggest several additional considerations when applying existing theoretical frameworks. These include the philosophical nature of the innovation, the need to study the evolution of the innovation itself as it emerges over time, greater attention to partnered processes as disruptors to existing power structures and an emphasis on driving transformational change in organizational cultures.
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  • 文章类型: Clinical Study
    背景:越来越多的证据表明,技术辅助性虐待(TSA)对大量儿童来说是一个严重的问题。迄今为止,在年轻人遭受这种形式的虐待后,很少有基于证据的干预措施(YP),获得支持服务仍然是一个挑战。智能手机等数字工具有可能增加获得心理健康支持的机会,并可能为YP提供一个机会来管理他们的痛苦并减少进一步受害的可能性。当前的研究探讨了数字健康干预(DHI;i-Minds应用程序)的可接受性,联合制作,基于心理的DHI,专为12-18岁的YP经历过TASA而设计。
    方法:对通过儿童和青少年心理健康服务招募的15个YP进行了半结构化访谈,性侵犯转诊中心和电子治疗提供者,作为可行性临床试验的一部分,可以使用i-Minds应用程序。访谈侧重于i-Minds的可接受性和可用性,并根据医疗保健干预框架的可接受性编码为主题。
    结果:所有参与者都认为i-Minds应用程序可以接受。该应用程序的许多方面被认为是愉快和有用的帮助YP了解他们的虐待,管理感情,改变行为。该应用程序被视为可用和易于导航,但是对于一些参与者来说,文本的水平是有问题的,内容的各个方面是,有时,有时情感上令人痛苦。
    结论:i-Minds应用程序可用于管理TASA并帮助更改一些与风险相关的漏洞。这个应用程序是设计的,与经历过TASA的YP一起开发和评估,这可能是所看到的高度可接受性的原因。
    背景:该试验于2022年4月12日在ISRCTN注册表上注册为i-Minds:针对暴露于在线性虐待的年轻人的数字干预(ISRCTN43130832)。
    BACKGROUND: There is growing evidence that Technology Assisted Sexual Abuse (TASA) represents a serious problem for large numbers of children. To date, there are very few evidence-based interventions available to young people (YP) after they have been exposed to this form of abuse, and access to support services remains a challenge. Digital tools such as smartphones have the potential to increase access to mental health support and may provide an opportunity for YP to both manage their distress and reduce the possibility of further victimization. The current study explores the acceptability of a digital health intervention (DHI; the i-Minds app) which is a theory-driven, co-produced, mentalization-based DHI designed for YP aged 12-18 who have experienced TASA.
    METHODS: Semi-structured interviews were conducted with 15 YP recruited through Child and Adolescent Mental Health Services, a Sexual Assault Referral Centre and an e-therapy provider who had access to the i-Minds app as part of a feasibility clinical trial. Interviews focused on the acceptability and usability of i-Minds and were coded to themes based on the Acceptability of Healthcare Interventions framework.
    RESULTS: All participants found the i-Minds app acceptable. Many aspects of the app were seen as enjoyable and useful in helping YP understand their abuse, manage feelings, and change behavior. The app was seen as usable and easy to navigate, but for some participants the level of text was problematic and aspects of the content was, at times, emotionally distressing at times.
    CONCLUSIONS: The i-Minds app is useful in the management of TASA and helping change some risk-related vulnerabilities. The app was designed, developed and evaluated with YP who had experienced TASA and this may account for the high levels of acceptability seen.
    BACKGROUND: The trial was registered on the ISRCTN registry on the 12/04/2022 as i-Minds: a digital intervention for young people exposed to online sexual abuse (ISRCTN43130832).
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  • 文章类型: Journal Article
    目的:智力残疾的人在较早的年龄患痴呆的风险增加。这是第一项探索当一个伴侣患有痴呆症时患有智力障碍的夫妇的经历的研究。
    方法:四名智力残疾患者的伴侣患有痴呆症,一名伴侣患有智力残疾和痴呆症,他们参加了叙事生活故事访谈。其中一次采访是作为一对夫妇进行的,总共有4对夫妇提供了直接的观点。此外,对9名社会护理专业人员和4名家庭成员进行了13次半结构化访谈。这提供了另外4对夫妇关系的观点,这共同导致了8对夫妇的数据。
    结果:痴呆诊断的情绪影响,规划未来,智障夫妇注意到对分离的恐惧。合作伙伴承担了关怀角色,从而挑战了仅成为照料者的观点。家庭谈到关系中的承诺和长寿,而社会护理工作人员强调了他们自己的信息需求如何变化,认识到智力残疾和痴呆症特定知识的重要性。
    结论:患有智力障碍的夫妇在以后的生活中继续享有亲密关系,并将面临包括痴呆症在内的老年常见疾病。那些提供支持的人需要确保他们对每对夫妇以前的经历和生活故事保持敏感,并对痴呆症如何影响智障人士有具体的了解。
    OBJECTIVE: People with intellectual disability are at increased risk of dementia at an earlier age. This is the first study to explore experiences of couples with an intellectual disability when one partner has dementia.
    METHODS: Four people with intellectual disability whose partner had dementia and one partner who had both an intellectual disability and dementia took part in narrative life story interviews. One of the interviews was conducted as a couple giving direct perspectives from 4 couples overall. Additionally, 13 semistructured interviews were conducted with 9 social care professionals and 4 family members. This provided perspectives of the relationships of a further 4 couples, which collectively led to data on 8 couples.
    RESULTS: The emotional impact of a dementia diagnosis, planning for the future, and fear of separation was noted by couples with intellectual disability. Partners took on caring roles thus challenging views of being solely care-receivers. Families spoke of commitment and longevity in relationships, whilst social care staff highlighted how their own information needs changed recognizing the importance of intellectual disability and dementia-specific knowledge.
    CONCLUSIONS: Couples with intellectual disability continue to enjoy intimate relationships into later life and will face common conditions in older age including dementia. Those who provide support need to ensure that they are sensitive to the previous experience and life story of each couple and have specific knowledge of how dementia can affect people with intellectual disability.
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  • 文章类型: Journal Article
    背景:对痴呆症患者及其照顾者的技术相关研究通常旨在使人们能够在家中居住更长时间,并防止不必要的入院。发展以人为本,有效,和伦理研究,患者和公众参与(PPI)是必要的,尽管这可能会被认为是更困难的队列。随着健康和护理相关技术的迅速发展,这篇综述探讨了研究人员和利益相关者(如痴呆症患者及其照顾者)之间的合作是如何进行的,以及产生了什么影响。
    目的:这篇综述旨在描述迄今为止在与技术相关的痴呆研究中使用的PPI的方法,以及PPI在这一领域的障碍、促进因素和影响。
    方法:对与痴呆有关的文献进行范围综述,技术,PPI使用MEDLINE进行,PsycINFO,Embase,和CINAHL。论文由2位作者筛选纳入。然后由相同的2位作者使用预先设计的数据提取表提取数据。第三作者支持在每个阶段解决任何冲突。然后对从事PPI的障碍和促进者进行了审查和主题化。
    结果:搜索产生了1694篇论文,筛查后进行分析的有31例(1.83%)。大多数(21/31,68%)没有明确区分作为PPI开展的活动和研究参与者开展的活动,因此,他们的参与并不容易符合美国国家卫生和护理研究所对PPI的定义.这种混合的参与大多集中在审查或评估技术原型。描述了一系列方法,最典型的是使用焦点小组或共同设计研讨会。总的来说,29%(9/31)描述参与整个研究周期的多个阶段,有时有分享决策权的证据。一些人(23/31,74%)评论了有效PPI的障碍或促进者。确定的挑战通常是与具有严重认知障碍的人一起工作以及时间和资源压力的问题。据报道,PPI的影响在很大程度上是积极的,包括患者和公共合作伙伴的经验,对研究质量的影响,以及它为研究人员提供的学习经验。只有4篇(13%)论文使用了正式的方法来评估影响。
    结论:研究人员经常让痴呆症患者和其他利益相关者参与技术研究。目前,尽管渴望高水平的参与和伙伴关系工作,但参与的范围往往有限。涉及痴呆症患者,他们的照顾者,和其他利益相关者可以对研究产生积极影响,耐心和公共伙伴,和研究人员。更广泛地报告方法和促进策略,以及更正式的记录和报告有意义影响的方法,将是有帮助的,以便所有参与研究人员,病人,和其他利益相关者-可以学习我们如何最好地一起进行研究。
    BACKGROUND: Technology-related research on people with dementia and their carers often aims to enable people to remain living at home for longer and prevent unnecessary hospital admissions. To develop person-centered, effective, and ethical research, patient and public involvement (PPI) is necessary, although it may be perceived as more difficult with this cohort. With recent and rapid expansions in health and care-related technology, this review explored how and with what impact collaborations between researchers and stakeholders such as people with dementia and their carers have taken place.
    OBJECTIVE: This review aims to describe approaches to PPI used to date in technology-related dementia research, along with the barriers and facilitators and impact of PPI in this area.
    METHODS: A scoping review of literature related to dementia, technology, and PPI was conducted using MEDLINE, PsycINFO, Embase, and CINAHL. Papers were screened for inclusion by 2 authors. Data were then extracted using a predesigned data extraction table by the same 2 authors. A third author supported the resolution of any conflicts at each stage. Barriers to and facilitators of undertaking PPI were then examined and themed.
    RESULTS: The search yielded 1694 papers, with 31 (1.83%) being analyzed after screening. Most (21/31, 68%) did not make clear distinctions between activities undertaken as PPI and those undertaken by research participants, and as such, their involvement did not fit easily into the National Institute for Health and Care Research definition of PPI. Most of this mixed involvement focused on reviewing or evaluating technology prototypes. A range of approaches were described, most typically using focus groups or co-design workshops. In total, 29% (9/31) described involvement at multiple stages throughout the research cycle, sometimes with evidence of sharing decision-making power. Some (23/31, 74%) commented on barriers to or facilitators of effective PPI. The challenges identified often regarded issues of working with people with significant cognitive impairments and pressures on time and resources. Where reported, the impact of PPI was largely reported as positive, including the experiences for patient and public partners, the impact on research quality, and the learning experience it provided for researchers. Only 4 (13%) papers used formal methods for evaluating impact.
    CONCLUSIONS: Researchers often involve people with dementia and other stakeholders in technology research. At present, involvement is often limited in scope despite aspirations for high levels of involvement and partnership working. Involving people with dementia, their carers, and other stakeholders can have a positive impact on research, patient and public partners, and researchers. Wider reporting of methods and facilitative strategies along with more formalized methods for recording and reporting on meaningful impact would be helpful so that all those involved-researchers, patients, and other stakeholders-can learn how we can best conduct research together.
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  • 文章类型: Journal Article
    玉米的生产会产生大量的农业工业废物,玉米芯占这种废物的很大一部分。在这项研究中,我们专注于利用玉米芯作为碳源和诱导剂,同时生产两种有价值的工业酶,蛋白酶,和木聚糖酶,使用B.haloduransCM1的重组菌株。有趣的是,富含木聚糖的玉米芯不仅增强了木聚糖酶活性,而且还诱导了修饰的B.haloduransCM1菌株的蛋白酶活性。研究了玉米芯浓度对蛋白酶和木聚糖酶协同生产的影响。在1vvm曝气条件下,在7L生物反应器中,浓度为6%的玉米芯诱导的蛋白酶活性为1020.7U/mL,木聚糖酶活性为502.8U/mL,250rpm搅拌,温度37°C,初始pH9.0和40小时的潜伏期。产生的蛋白酶是一种生物碱嗜热酶,其最高活性在pH12和50°C下,它属于丝氨酸蛋白酶家族。这种嗜碱热蛋白酶的活性在某种程度上被Co2+降低,Mg2+,Fe2+,Zn2+,K+,但被Ca2+和Ni2+(5mM)增强。即使在15%浓度的丙酮存在下,蛋白酶也是稳定的,DMSO,乙醇,和异丙醇。30°C时的蛋白酶活性没有因洗涤剂的存在而发生明显变化,表明作为洗涤洗涤剂添加剂的优异潜力。根据这些发现,玉米芯有可能成为蛋白酶和木聚糖酶共同生产的底物,具有广泛的工业用途。
    The production of corn generates a substantial amount of agro-industrial waste, with corncob accounting for a significant portion of this waste. In this study, we focused on utilizing corncob as a carbon source and inducer to simultaneously produce two valuable industrial enzymes, protease, and xylanase, using a recombinant strain of B. halodurans CM1. Interestingly, xylan-rich corncob not only enhanced the xylanase activity but also induced protease activity of the modified B. halodurans CM1 strain. The effect of corncob concentration on the coproduction of protease and xylanase was investigated. Corncob with 6 % concentration induced protease activity of 1020.7 U/mL and xylanase activity of 502.8 U/mL in a 7 L bioreactor under the condition of 1 vvm aeration, 250 rpm agitation, 37 °C temperature, initial pH 9.0, and 40 h incubation period. The protease produced was an alkalothermophilic enzyme whose highest activity was at pH 12 and 50 °C, and it belonged to a serine protease family. This alkalothermophilic protease\'s activity to some degree was reduced by Co2+, Mg2+, Fe2+, Zn2+, and K+, but enhanced by Ca2+ and Ni2+ (at 5 mM). The protease was stable even under the presence of a 15 % concentration of acetone, DMSO, ethanol, and isopropyl alcohol. The protease activity at 30 °C was not considerably changed by the presence of detergent, indicating excellent potential as a washing detergent additive. According to these findings, corncob has the potential to be a substrate for the coproduction of protease and xylanase, which have a wide range of industrial uses.
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