Coproduction

联产
  • 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: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
    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
    背景:学龄前儿童的龋齿是全球健康问题。大流行期间,随着获得技术的机会增加和医疗保健的中断,移动健康应用程序作为个人健康维护的潜在工具一直备受关注。然而,对照顾孩子的牙齿以及他们对口腔健康应用程序的内容或设计的偏好知之甚少。
    目的:本研究旨在与家长共同设计一款名为AppforChildren\'sTeeth的应用程序的原型,为他们提供有关照顾孩子牙齿和促进积极牙齿习惯的信息来源。
    方法:这项多方法研究对6岁以下儿童的父母或照顾者进行了用户参与研究,以(1)通过电子健康素养量表和访谈了解他们对互联网的使用情况。(2)确定他们对儿童口腔健康相关内容的意见,(3)使用可接受性理论框架收集有关应用程序可接受性的反馈。有三个阶段:(1)采访父母,了解他们的需求,preferences,和能力;(2)与应用程序开发人员进行原型设计;(3)使用Thinkaloud方法进行数据收集的父母反馈访谈。使用码本策略对数据进行演绎分析,而来自大声思考会话的数据是使用反身主题分析进行归纳分析的。
    结果:原型设计阶段涉及10位父母,他们报告使用互联网获取健康信息,但发现这些信息分散且矛盾。家长们普遍欢迎儿童牙齿应用程序,但对屏幕时间和实用性表示担忧。他们提出了关于口腔卫生习惯的指导,出牙症状,和疼痛缓解。家长赞赏的功能,如清晰的字体,根据孩子的年龄进行分类,和“简而言之”要点。引起父母共鸣的话题包括有关出牙的信息,找个牙医,和母乳喂养。他们认为该应用程序符合他们的目标,并为未来的发展提供了建议,例如概述寻找牙医的过程,并为父母建立一个交流和交流想法的论坛。
    结论:协同生产设计方法强调了父母对移动健康应用程序等解决方案的需求,以访问有关口腔健康的可靠信息。父母确定了该应用程序的关键设计概念,包括一个简单而整洁的界面,根据孩子的年龄对内容进行分类,和视觉辅助支持的实用指导。尽管存在与屏幕时间限制相关的潜在挑战,父母提供了这样一个应用程序如何无缝地融入他们的生活的见解。
    背景:开放科学框架;https://osf.io/uj9az。
    BACKGROUND: Dental caries in preschool children is a global health concern. With increased access to technology and the disruption of health care during the pandemic, mobile health apps have been of interest as potential vehicles for individuals\' health maintenance. However, little is known about caring for their child\'s teeth and what their preferences would be regarding the content or design of an oral health app.
    OBJECTIVE: This study aims to co-design the prototype of an app named App for Children\'s Teeth with parents, providing a source of information for them about caring for their children\'s teeth and promoting positive dental habits.
    METHODS: This multimethod study conducted user involvement research with a purposive sample of parents or carers of children aged ≤6 years to (1) understand their use of the internet through the eHealth Literacy Scale and interviews, (2) determine their opinions about content related to children\'s oral health, and (3) collect feedback about the app\'s acceptability using the Theoretical Framework of Acceptability. There were three stages: (1) interviews with parents to understand their needs, preferences, and abilities; (2) prototype design with app developers; and (3) parent feedback interviews using the think aloud method for data collection. Data were deductively analyzed using a codebook strategy, whereas data from the think aloud sessions were analyzed inductively using reflexive thematic analysis.
    RESULTS: The prototype design stage involved 10 parents who reported using the internet for health information but found it to be scattered and contradictory. Parents generally welcomed the App for Children\'s Teeth but expressed concerns about screen time and practicality. They suggested guidance regarding oral hygiene practices, teething symptoms, and pain relief. Parents appreciated features such as clear fonts, categorization according to their child\'s age, and \"In a Nutshell\" bullet points. Topics that resonated with parents included information about teething, finding a dentist, and breastfeeding. They believed that the app aligned with their goals and offered suggestions for future developments, such as outlining the process of finding a dentist and incorporating a forum for parents to communicate and exchange ideas.
    CONCLUSIONS: The coproduction design approach highlighted parents\' need for solutions such as mobile health apps to access reliable information about oral health. Parents identified key design concepts for the app, including a simple and uncluttered interface, content categorization according to their child\'s age, and practical guidance supported by visual aids. Despite potential challenges related to screen time restrictions, parents provided insights into how such an app could fit seamlessly into their lives.
    BACKGROUND: Open Science Framework; https://osf.io/uj9az.
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  • 文章类型: Journal Article
    背景:SMS短信是负担得起的,可扩展,和有效的戒烟干预措施。然而,关于SMS短信干预措施的研究很少,专门设计用于支持吸烟的人通过切换到vaping来戒烟。
    目标:在三个阶段,与vapers和吸烟者,我们共同开发并共同制作了手机短信程序。共同生产范式使我们能够与研究人员和社区合作,开发出更相关的,可接受,和公平的短信程序。
    方法:在第一阶段,我们通过Twitter聘请了vape的人,并收到了167份回复,要求他们为希望通过改用vaping戒烟的人写短信。我们筛选,调整后,精致,并以信息为主题,导致一组95个映射到能力,机会,和动机-行为结构。在第2阶段,我们通过网络调查评估了第1阶段的95条消息,其中参与者(66/202,32.7%的女性)在9种构造的7分Likert量表上对20条消息进行了评分:可以理解,clear,可信,乐于助人,有趣的,无害的,积极的,热情和他们收到这些信息会有多高兴。在第3阶段,我们实施了SMS文本消息的最终集合,作为更大的随机优化试验的一部分,其中603名参与者(平均年龄38.33岁,SD12.88岁;n=369,61.2%女性)接受了SMS短信支持,然后对他们的有用性和频率进行了评估,并在12周的随访中提供了免费文本评论.
    结果:对于第2阶段,计算了9个构建体的每个消息的均值和SD。用vapers讨论了那些具有低于4的中性锚或具有不利评论的方法,并进一步细化或去除。这导致了最后一组78个被映射到早期,mid-,或退出的后期阶段为消息创建订单。对于第3阶段,共有38.5%(232/603)的参与者在12周的随访中提供了评级。总的来说,69.8%(162/232)报告说短信有用,发现戒烟率和有用性评分之间存在显著关联(χ21=9.6;P=0.002)。对自由文本评论的内容分析显示,2个最常见的正面主题是有帮助的(13/47,28%)和令人鼓舞的(6/47,13%),2个最常见的负面主题过于频繁(9/47,19%)和烦人(4/47,9%)。
    结论:在本文中,我们描述了一组SMS短信的最初共同生产和共同开发,以通过过渡到vaping来帮助吸烟者戒烟。我们鼓励研究人员使用,进一步发展,并评估SMS文本消息集,并使其适应目标人群和相关上下文。
    BACKGROUND: SMS text messages are affordable, scalable, and effective smoking cessation interventions. However, there is little research on SMS text message interventions specifically designed to support people who smoke to quit by switching to vaping.
    OBJECTIVE: Over 3 phases, with vapers and smokers, we codeveloped and coproduced a mobile phone SMS text message program. The coproduction paradigm allowed us to collaborate with researchers and the community to develop a more relevant, acceptable, and equitable SMS text message program.
    METHODS: In phase 1, we engaged people who vape via Twitter and received 167 responses to our request to write SMS text messages for people who wish to quit smoking by switching to vaping. We screened, adjusted, refined, and themed the messages, resulting in a set of 95 that were mapped against the Capability, Opportunity, and Motivation-Behavior constructs. In phase 2, we evaluated the 95 messages from phase 1 via a web survey where participants (66/202, 32.7% woman) rated up to 20 messages on 7-point Likert scales on 9 constructs: being understandable, clear, believable, helpful, interesting, inoffensive, positive, and enthusiastic and how happy they would be to receive the messages. In phase 3, we implemented the final set of SMS text messages as part of a larger randomized optimization trial, in which 603 participants (mean age 38.33, SD 12.88 years; n=369, 61.2% woman) received SMS text message support and then rated their usefulness and frequency and provided free-text comments at the 12-week follow-up.
    RESULTS: For phase 2, means and SDs were calculated for each message across the 9 constructs. Those with means below the neutral anchor of 4 or with unfavorable comments were discussed with vapers and further refined or removed. This resulted in a final set of 78 that were mapped against early, mid-, or late stages of quitting to create an order for the messages. For phase 3, a total of 38.5% (232/603) of the participants provided ratings at the 12-week follow-up. In total, 69.8% (162/232) reported that the SMS text messages had been useful, and a significant association between quit rates and usefulness ratings was found (χ21=9.6; P=.002). A content analysis of free-text comments revealed that the 2 most common positive themes were helpful (13/47, 28%) and encouraging (6/47, 13%) and the 2 most common negative themes were too frequent (9/47, 19%) and annoying (4/47, 9%).
    CONCLUSIONS: In this paper, we describe the initial coproduction and codevelopment of a set of SMS text messages to help smokers stop smoking by transitioning to vaping. We encourage researchers to use, further develop, and evaluate the set of SMS text messages and adapt it to target populations and relevant contexts.
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  • 文章类型: Journal Article
    背景:涉及各种利益相关者团体的伙伴关系研究实践正在取得进展。然而,研究界仍在探索如何有效地共同进行研究。这项研究描述了(a)在瑞典建立为期6年的伙伴关系研究计划方面的关键计划发展,(b)探索希望,期望,和病人创新者的经验(即,具有驱动健康创新的患者或护理人员的生活经验的个人)和在最初几年参与该计划的研究人员。
    方法:我们在项目的前2年进行了一项前瞻性纵向定性研究。数据包括会议协议和对14名研究人员和6名患者创新者的访谈;39次访谈分三轮进行。我们确定了会议协议中的重大事件和讨论主题,并使用主题分析对访谈进行了分析,应用横截面递归方法跟踪随时间的变化。
    结果:会议协议揭示了几种伙伴关系实践(例如,项目管理团队,特遣部队,角色描述文档)是共同创建的,支持方案成员之间分享权力和责任。基于对访谈的分析,我们创造了三个主题:(1)为更美好的明天铺路,反映项目成员的高期望;(2)一起进行公路旅行,反映寻找新角色和学习如何共同创造的经验;(3)找到节奏:从说话到做事,反映管理挑战和成为一个团队生产力的经验。
    结论:我们的研究结果表明,分享,尊重,承认彼此的经验和关切有助于建立相互信任和塑造伙伴关系实践。超出研究生产率的高期望表明,我们需要考虑不同层面的结果,从个人到社会,在评估伙伴关系研究的影响时。
    研究团队包括具有正式研究经验的成员和具有作为患者或非正式护理人员的生活经验的成员。一位患者创新者共同撰写了这篇论文,并为研究的各个方面做出了贡献。包括研究的设计;数据的产生(作为受访者);调查结果的解释;和起草手稿。
    BACKGROUND: Partnership research practices involving various stakeholder groups are gaining ground. Yet, the research community is still exploring how to effectively coproduce research together. This study describes (a) key programme developments in the creation of a 6-year partnership research programme in Sweden, and (b) explores the hopes, expectations, and experiences of patient innovators (i.e., individuals with lived experience as patients or caregivers who drive health innovations) and researchers involved in the programme during the first years.
    METHODS: We conducted a prospective longitudinal qualitative study spanning the first 2 years of the programme. Data consisted of meeting protocols and interviews with 14 researchers and 6 patient innovators; 39 interviews were carried out in three evenly-spaced rounds. We identified significant events and discussion themes in the meeting protocols and analyzed the interviews using thematic analysis, applying a cross-sectional recurrent approach to track changes over time.
    RESULTS: Meeting protocols revealed how several partnership practices (e.g., programme management team, task forces, role description document) were cocreated, supporting the sharing of power and responsibilities among programme members. Based on the analysis of interviews, we created three themes: (1) paving the path to a better tomorrow, reflecting programme members\' high expectations; (2) going on a road trip together, reflecting experiences of finding new roles and learning how to cocreate; (3) finding the tempo: from talking to doing, reflecting experiences of managing challenges and becoming productive as a team.
    CONCLUSIONS: Our findings suggest that sharing, respecting, and acknowledging each other\'s experiences and concerns helps build mutual trust and shape partnership practices. High expectations beyond research productivity suggest that we need to consider outcomes at different levels, from the individual to society, when evaluating the impact of partnership research.
    UNASSIGNED: The research team included members with formal experiences as researchers and members with lived experiences of being a patient or informal caregiver. One patient innovator coauthored this paper and contributed to all aspects of the research, including the design of the study; production of data (as interviewee); interpretation of findings; and drafting the manuscript.
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  • 文章类型: Journal Article
    背景:多发性硬化症(MS)是一种慢性自身免疫性疾病,对生活质量和功能能力有重大影响。由于越来越有效的治疗方法的发展,MS的预后随着时间的推移而改变。随着人们对慢性病患者的知识和观念越来越得到认可,重要的是要了解生活的经验,重点是日常事件和经验,作为了解和解释世界的一种方式。探索特定环境的生活经验,作为有关疾病和护理的知识来源,可能有助于在设计护理服务时更加精确。这项研究的目的是探索在瑞典背景下患有MS的人的生活经验。
    方法:采用有目的和随机抽样策略进行了定性访谈研究,进行了10次面试。使用归纳主题内容分析对数据进行分析。
    结果:分析产生了4个总体主题和12个子主题,这4个主题是:对生活和健康的看法,对日常生活的影响,与医疗保健的关系,共享医疗流程。主题与患者自己的观点和背景以及医疗和医疗保健相关的观点有关。发现了共享经验的模式,例如,在诊断确认中,未来的前景,规划和协调。与他人的关系出现了更多不同的经历,个人要求,症状和后果,和知识建设。
    结论:研究结果表明,需要更多样化和共同生产的医疗服务发展,以满足人口的多样化需求,同时更多地认识到人的生活经历,包括考虑疾病的复杂性,个人诚信,和不同的认识方式。这项研究的结果将与其他定量和定性数据一起进一步探讨。
    Multiple sclerosis (MS) is a chronic autoimmune disease with a substantial impact on quality of life and functional capability. The prognosis of MS has changed over time due to the development of increasingly effective therapies. As the knowledge and perceptions of persons living with chronic conditions increasingly have been acknowledged, it has become important to understand lived experiences with a focus on everyday events and experiences as a way of knowing and interpreting the world. Exploring context-specific lived experiences as a source of knowledge about the disease and care may contribute to more precision in designing care services. The aim of this study was to explore the lived experience of persons living with MS in a Swedish context.
    A qualitative interview study was conducted with both purposeful and random sampling strategies, resulting in 10 interviews. Data were analyzed using inductive thematic content analysis.
    The analysis generated 4 overarching themes with 12 subthemes, the 4 themes were: perspectives on life and health, influence on everyday life, relations with healthcare, and shared healthcare processes. The themes are concerned with the patients\' own perspectives and context as well as medical and healthcare-related perspectives. Patterns of shared experiences were found, for example, in the diagnosis confirmation, future perspectives, and planning and coordination. More diverse experiences appeared concerning relations with others, one\'s individual requirements, symptoms and consequences, and knowledge building.
    The findings suggest a need for a more diverse and coproduced development of healthcare services to meet diverse needs in the population with greater acknowledgement of the person\'s lived experience, including consideration of the complexity of the disease, personal integrity, and different ways of knowing. Findings from this study will be further explored together with other quantitative and qualitative data.
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  • 文章类型: Journal Article
    背景:全球COVID-19的高发病率导致长型COVID的高患病率,但缺乏循证治疗。有必要评估与长型COVID相关症状的现有治疗方法。然而,首先需要评估对该疾病进行干预的随机对照试验的可行性。我们的目标是共同开展一项非药物干预措施的可行性研究,以支持长型COVID患者。
    方法:与患者和其他利益相关者进行了关于研究优先级的共识研讨会。随后与一组患者合作伙伴共同制作了可行性试验,其中包括研究的设计,干预措施的选择,以及传播策略的制定。
    结果:23个利益相关者参加了共识研讨会,包括6名患者。研讨会的共识是开发一个专注于测试不同起搏干预措施和资源的临床试验平台。对于可行性试验的联合生产,患者合作伙伴选择了三个起搏资源进行评估(视频,移动应用程序,和书籍)和共同设计的可行性研究过程,研究材料,并对数字试验平台进行可用性测试。
    结论:结论:本文报道了用于联合开展LongCOVID起搏干预可行性研究的原则和过程.联合生产是有效的,并影响了研究的重要方面。
    世界卫生组织将长型COVID定义为一种在首次感染COVID-193个月后会影响人们的疾病。长型COVID症状的一些特征包括疲劳,呼吸困难和脑雾。这些症状对人们的健康和生活质量有重大影响。今天,在英国,超过200万人患有长型COVID,缺乏药物和非药物治疗。然而,一些非药物治疗旨在管理其他条件下的疲劳,比如起搏,可以和长COVID的人一起使用。在本文中,我们报告了我们如何共同开展一项研究,该研究测试了长型COVID患者使用起搏资源并使用电子平台报告其症状是否可行.在审查现有非药物治疗的会议之后,研究团队和一组患者合作伙伴同意共同开发一个临床试验平台来测试不同的起搏资源.然后,研究小组每周两次与患者伙伴会面,共同设计这项研究,在此期间,患有长型COVID的人将使用起搏资源并报告他们的症状。他们还共同设计了研究文件以及如何报告其结果。与患者伙伴共同进行研究是有效的,并影响了研究的重要方面。
    BACKGROUND: The high incidence of COVID-19 globally has led to a large prevalence of Long COVID but there is a lack of evidence-based treatments. There is a need to evaluate existing treatments for symptoms associated with Long COVID. However, there is first a need to evaluate the feasibility of undertaking randomised controlled trials of interventions for the condition. We aimed to co-produce a feasibility study of non-pharmacological interventions to support people with Long COVID.
    METHODS: A consensus workshop on research prioritisation was conducted with patients and other stakeholders. This was followed by the co-production of the feasibility trial with a group of patient partners, which included the design of the study, the selection of interventions, and the production of dissemination strategies.
    RESULTS: The consensus workshop was attended by 23 stakeholders, including six patients. The consensus from the workshop was to develop a clinical trial platform that focused on testing different pacing interventions and resources. For the co-production of the feasibility trial, patient partners selected three pacing resources to evaluate (video, mobile application, and book) and co-designed feasibility study processes, study materials and undertook usability testing of the digital trial platform.
    CONCLUSIONS: In conclusion, this paper reports the principles and process used to co-produce a feasibility study of pacing interventions for Long COVID. Co-production was effective and influenced important aspects of the study.
    The World Health Organisation defines Long COVID as a condition which impacts people 3 months after they first had COVID-19. Some of the symptoms that characterise Long COVID symptoms include fatigue, breathlessness and brain fog. These symptoms have a major impact on people’s health and quality of life. Today, over 2 million people in the United Kingdom suffer from Long COVID and there is a lack of drugs and non-drugs treatment. However, some non-drugs treatments which aim to manage fatigue in other conditions, such as pacing, could be used with people with Long COVID. In this paper, we report how we co-produced a study which tested whether or not it is feasible for people who have Long COVID to use a pacing resource and report their symptoms using an electronic platform. After a meeting to review existing non-drugs treatments, the research team and a group of patient partners agreed on co-developing a clinical trial platform to test different pacing resources. The research team then met with the patient partners twice a week to co-design the study during which people with Long COVID will use the pacing resources and report their symptoms. They also co-designed the study documents and how to report its results. Co-producing a study with patient partners was effective and influenced important aspects of the study.
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  • 文章类型: Journal Article
    背景:进食障碍(ED)是与生活质量明显受损相关的严重精神障碍。尽管疾病的严重程度和该领域的广泛研究,缺乏有效的治疗方法。数字干预在心理健康中获得了基于证据的地位,为精神病治疗提供新的视角。MazeOut是由患者和治疗师共同制作的严肃游戏,专注于支持ED患者。
    目的:本研究的目的是调查ED患者和治疗师参与迷宫的经验和可接受性。
    方法:本研究是一项定性试点研究,涉及通过焦点小组和个人访谈收集的数据以及通过游戏收集的用户分析。参与者是从丹麦南部地区的欧登塞精神卫生服务局招募的。定性访谈通过语法分析进行分析,并通过解释性现象学分析进行解释,以评估患者和治疗师对MazeOut的接受度和体验。移动健康证据报告和评估清单用于描述内容,context,和游戏的技术特征,以标准化的方式为移动健康应用程序。
    结果:参与者发现MazeOut很有吸引力,易于使用,也是反思他们失序的好平台。他们主要使用MazeOut作为他们亲密关系的对话工具,让他们了解患有ED的人的经历和日常生活挣扎。
    结论:MazeOut似乎是补充当前ED治疗的有希望的工具。进一步的研究应侧重于评估游戏的有效性及其支持不同类型ED患者的潜力。
    BACKGROUND: Eating disorders (EDs) are severe mental disorders associated with notable impairments in the quality of life. Despite the severity of the disorders and extensive research in the field, effective treatment for EDs is lacking. Digital interventions are gaining an evidence-based position in mental health, providing new perspectives in psychiatric treatment. Maze Out is a serious game coproduced by patients and therapists that focuses on supporting patients with EDs.
    OBJECTIVE: The aim of this study was to investigate the experiences of engaging in and acceptability of Maze Out among patients with EDs and therapists.
    METHODS: This study is a qualitative pilot study involving data collected through focus groups and individual interviews and user analytics collected through the game. The participants were recruited from the Odense Mental Health Service of the Region of Southern Denmark. Qualitative interviews analyzed by thematical analysis and interpreted by interpretative phenomenological analysis were used to evaluate the acceptance and experience of Maze Out among patients and therapists. The mobile health evidence reporting and assessment checklist was used to describe the content, context, and technical features of the game in a standardized manner for mobile health apps.
    RESULTS: The participants found Maze Out to be engaging, easy to use, and a good platform for reflecting on their disorder. They primarily used Maze Out as a conversational tool with their close relationships, giving them insights into the experiences and daily life struggles of someone with EDs.
    CONCLUSIONS: Maze Out seems to be a promising tool supplementing the current ED treatment. Further research should focus on evaluating the effectiveness of the game and its potential to support patients with different types of EDs.
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