research involvement

研究参与
  • 文章类型: Journal Article
    BACKGROUND: Research is the foundation of the dietetic profession and of evidence-based guidelines/practice. The present study aimed to examine the level of research involvement among dietitians in Europe.
    METHODS: A cross-sectional study was conducted among dietitians across Europe using the validated Research Involvement Questionnaire (RIQ), which assigns participants to four levels of research involvement. The survey link was distributed through various channels; for example, National Dietetic Association (NDA) members of European Federation of the Associations of Dietitians (EFAD), the EFAD eNewsletter, national newsletters, etc. Data were analysed with SPSS, using descriptive statistics, statistical tests and ordinal logistic regression analysis with the level of research involvement as the dependent variable.
    RESULTS: In total, 257 European dietitians completed the survey (84.6% female). Most participants held a Master\'s degree (46.1%), followed by a Bachelor\'s degree (27.3%) or Doctorate (25.7%). One-third of participants were involved at level 3 or 4 (leading research, leadership in research), whereas most were involved at level 1 (evidence-based practice) or 2 (collaboration in research). The multivariate regression analysis showed that dietitians\' research involvement was higher in dietitians with a Doctorate and in Northern/Southern Europe compared to Eastern/Western Europe.
    CONCLUSIONS: Dietitians have low levels of research involvement in practice even when highly qualified. Interventions to motivate dietitians to be more involved in research projects are important, as well as interventions to facilitate dietitians\' research activities. This would inform the discipline\'s evidence base, strengthen the professional status of dietitians and increase their reputation within the healthcare sector.
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  • 文章类型: Journal Article
    这项研究的目的是报告在进行研究项目时获得的经验,其中社会工作者的积极参与是一个核心特征。
    在实现框架AIF(主动实现框架)的指导下,从多个来源收集数据,例如指导会议的会议记录,与经理的会议,助推器天,以及焦点小组采访社会工作者的转录。
    研究结果表明,社会工作者需要在计划开始之前接受研究活动的培训,并有时间进行治疗前和治疗后的反思。要提供和维持像我和我的家人这样的干预措施,需要横断面合作和具有学位的工作人员对计划交付进行反思。研究设计经验表明,RCT方法难以完成。另一个发现是筒仓中的组织结构是招募家庭的障碍。
    让社会工作者参与实践研究,关注有关日程安排的管理支持需求,例程和对循证实践的兴趣,受过良好教育的社会工作者,并特别注意与客户需求相关的研究设计。使用AIF框架得出的结论包括需要持续的指导和咨询以及对结果的反馈。
    UNASSIGNED: The aim of this study was to report experiences gained while conducting the research project, in which social workers\' active participation was a core feature.
    UNASSIGNED: Guided by the implementation framework AIF (Active Implementation Framework) data were collected from multiple sources, such as minutes from guidance sessions, meetings with managers, booster days, and transcriptions of focus group interviews with social workers.
    UNASSIGNED: Findings indicate that social workers need to receive training in research activities before program start and to have time for pre- and post-therapeutic session reflections To deliver and maintain an intervention like Me & my Family require cross-sectional cooperation and staff having academic degrees to develop reflections on program delivery. Research design experiences indicate that RCT methods proved difficult to accomplish. An additional finding was organizational structures in silos as a barrier to recruiting families.
    UNASSIGNED: Involving social workers in doing research on practices concern needs for managerial support regarding scheduling, routines and interest in evidence-based practice, well-educated social workers, and special attention to research design in relation to clients\' needs. Conclusions drawn from using the AIF framework include the need for continuous coaching and consultations as well as feed-back on results.
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  • 文章类型: Journal Article
    背景:儿童和青少年有权参与有关其健康的决定并发表意见,医院的经验。患者报告的经验措施(PREM)是将患者声音系统地纳入医疗保健系统的有价值的工具。新的发展集中在儿童和青少年的PREM上,虽然他们更常用于成人。最近的系统审查将其用于儿童和青少年,表明对这一领域的兴趣与日俱增。然而,大多数PREM由代理完成,在这种情况下,父母,因此,他们不一定反映儿童的经历或符合他们的权利。需要创新来支持和吸引儿童和青少年对这些类型的问卷做出回应。
    方法:与儿童和青少年(4-17岁)合作,本研究的主要目的是开发和验证包含数字和适合发展的PREM的MyHospitalVoice工具。次要目的是记录和评估用于涉及儿童和青少年的方法,并评估其参与的影响。根据欧洲癌症研究和治疗组织框架,我们将把它的开发和验证分为四个阶段。首先,我们将与儿童和青少年讨论PREM项目,谁将选择并优先考虑他们认为最重要的事情。第二,我们将创建针对不同年龄段(4-7,8-12和13-17岁)的项目,并设计一个响应式数字界面,以儿童和青年友好的方式回答问卷。第三,我们将探讨儿童和青少年如何使用认知访谈技术和其他适合年龄的方法来感知MyHospitalVoice.最后,我们将试点测试MyHospitalVoice,以探索患者的体验和反应率。在每个阶段,儿童和青少年将发挥积极作用。我们将让年轻人作为同伴研究人员参与项目组,以确保他们的观点是决策过程的一部分。
    结论:该项目将有助于儿童和青少年共同创造的研究,并增强我们对患者体验的理解。像MyHospitalVoice这样的经过验证的工具可以通过将儿童和青少年的需求和偏好转化为临床实践来帮助提高护理质量。
    BACKGROUND: Children and adolescents have the right to participate in decisions concerning their health and express their views, also regarding hospital experiences. Patient-reported experience measures (PREMs) are valuable tools for systematically incorporating patient voices into healthcare systems. New developments have focused on PREMs for children and adolescents, though they are more commonly used in adults. A recent systematic review mapping their use for children and adolescents indicates a growing interest in this area. However, most PREMs are completed by proxy, in this case parents, so they do not necessarily reflect children\'s experiences or align with their rights. Innovation is required to support and engage children and adolescents in responding to these types of questionnaires.
    METHODS: Collaborating with children and adolescents (4-17 years), the primary aim of this study is to develop and validate the tool MyHospitalVoice containing digital and developmentally appropriate PREMs. The secondary aim is to document and evaluate the approaches used to involve children and adolescents and to assess the impact of their involvement. Based on the European Organisation for Research and Treatment of Cancer framework, we will divide its development and validation into four phases. First, we will discuss PREM items with children and adolescents, who will select and prioritise what they perceive as most important. Second, we will create items targeting different age groups (4-7, 8-12, and 13-17 years) and design a responsive digital interface with child and youth friendly ways of responding to the questionnaires. Third, we will explore how children and adolescents perceive MyHospitalVoice using cognitive interviewing techniques and other age-appropriate methods. Last, we will pilot test MyHospitalVoice to explore patient experiences and response rates. In each phase, children and adolescents will play an active role. We will involve young adults as peer researchers in the project group to ensure that their perspectives are part of the decision-making process.
    CONCLUSIONS: This project will contribute to research on co-creating with children and adolescents and enhance our understanding of their patient experiences. A validated tool like MyHospitalVoice can help improve quality of care by translating the needs and preferences of children and adolescents into clinical practice.
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  • 文章类型: Journal Article
    背景:近年来,研究中的患者和公众参与(PPI)显着增加;然而,PPI的报告仍然很差。制定了《患者和公众参与报告指南》(GRIPP2),以提高PPI报告的质量和一致性。本系统评价的目的是使用GRIPP2检查表确定患者安全性(PS)研究中PPI报告的频率和质量。
    方法:在OvidMEDLINE中进行搜索,EMBASE,PsycINFO,从2018年到12月的andCINAHL,2023年。包括PS研究中PPI的研究。我们包括实证定性,定量,混合方法,和案例研究。仅包括在英文同行评审期刊上发表的文章。使用(GRIPP2-SF)清单的简短形式评估PPI报告的质量。
    结果:从数据库搜索中检索到总共8561项研究,更新,和参考检查,其中82人符合资格标准,并被纳入本次审查。主要PS主题与药物安全有关,一般PS,跌倒预防。患者代表,倡导者,病人咨询小组,病人,服务用户,健康消费者参与最多。这些研究的主要参与是评论或开发研究材料。只有6.1%(n=5)的研究报告了GRIPP2清单中的PPI。关于遵循GRIPP2-SF标准的报告质量,我们的研究结果表明,次优报告主要是由于以下方面的失败:在研究中批判性地反思PPI;在研究中报告PPI的目标;以及报告PPI对研究的总体影响程度.
    结论:我们的综述显示,使用GRIPP2检查表的PS研究中PPI报告频率较低。此外,它揭示了GRIPP2-SF项目后PPI报告的次优质量。研究人员,资助者,出版商,和期刊需要按照GRIPP2等国际制定的报告准则,促进一致和透明的PPI报告。应鼓励和支持基于证据的PPI报告指南,因为它有助于未来的研究人员更有效地计划和报告PPI。
    背景:审核协议已在PROSPERO(CRD42023450715)中注册。
    BACKGROUND: In recent years, patient and public involvement (PPI) in research has significantly increased; however, the reporting of PPI remains poor. The Guidance for Reporting Involvement of Patients and the Public (GRIPP2) was developed to enhance the quality and consistency of PPI reporting. The objective of this systematic review is to identify the frequency and quality of PPI reporting in patient safety (PS) research using the GRIPP2 checklist.
    METHODS: Searches were performed in Ovid MEDLINE, EMBASE, PsycINFO, and CINAHL from 2018 to December, 2023. Studies on PPI in PS research were included. We included empirical qualitative, quantitative, mixed methods, and case studies. Only articles published in peer-reviewed journals in English were included. The quality of PPI reporting was assessed using the short form of the (GRIPP2-SF) checklist.
    RESULTS: A total of 8561 studies were retrieved from database searches, updates, and reference checks, of which 82 met the eligibility criteria and were included in this review. Major PS topics were related to medication safety, general PS, and fall prevention. Patient representatives, advocates, patient advisory groups, patients, service users, and health consumers were the most involved. The main involvement across the studies was in commenting on or developing research materials. Only 6.1% (n = 5) of the studies reported PPI as per the GRIPP2 checklist. Regarding the quality of reporting following the GRIPP2-SF criteria, our findings show sub-optimal reporting mainly due to failures in: critically reflecting on PPI in the study; reporting the aim of PPI in the study; and reporting the extent to which PPI influenced the study overall.
    CONCLUSIONS: Our review shows a low frequency of PPI reporting in PS research using the GRIPP2 checklist. Furthermore, it reveals a sub-optimal quality in PPI reporting following GRIPP2-SF items. Researchers, funders, publishers, and journals need to promote consistent and transparent PPI reporting following internationally developed reporting guidelines such as the GRIPP2. Evidence-based guidelines for reporting PPI should be encouraged and supported as it helps future researchers to plan and report PPI more effectively.
    BACKGROUND: The review protocol is registered with PROSPERO (CRD42023450715).
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  • 文章类型: Journal Article
    所有骨科手术住院医师计划都必须有研究经验。尽管所需的受保护时间和资源的分配因程序而异,研究的潜在重要性仍然与居民,计划和教师的互惠互利相一致。作者和出版物已成为评估学术成功的标准指标。这项研究旨在确定骨科手术受训者的研究生产率与他们作为骨科医师的后续研究生产率之间是否存在相关性。
    使用密西西比大学骨科住院医师计划研究生产力排名,分析了30种不同的骨科住院医师计划,以了解他们2013年班级中每位毕业外科医生的姓名。PubMedCentral用于筛查所有156名医生,并收集他们在2008年至2022年8月之间制作的所有出版物。结果分为两类:培训期间的出版物和培训后的出版物。
    如上所述,在培训和培训后分析了156名外科医生的出版物。培训后的平均出版物数量为7.02±17.819训练期间2.47±4.313,P<0.001。培训后的出版物范围为0-124vs.训练期间0-30。两组间Pearson相关结果为0.654,P<0.001。
    更高的研究生产率,而培训与更高的生产率相关,但总体来说,骨科外科医生在培训后比培训期间进行的研究更多。随着研究的重要性与日俱增,更多的指导,时间,和资源必须专门用于研究,以灌输和促进更多参与培训。
    UNASSIGNED: Research experience is mandatory for all Orthopaedic Surgery residency programs. Although the allocation of required protected time and resources varies from program to program, the underlying importance of research remains consistent with mutual benefit to both residents and the program and faculty. Authorship and publications have become the standard metric used to evaluate academic success. This study aimed to determine if there is a correlation between the research productivity of Orthopaedic Surgery trainees and their subsequent research productivity as attending Orthopaedic Surgeons.
    UNASSIGNED: Using the University of Mississippi Orthopaedic Residency Program Research Productivity Rank List, 30 different Orthopaedic Surgery Residency Programs were analyzed for the names of every graduating surgeon in their 2013 class. PubMed Central was used to screen all 156 physicians and collect all publications produced by them between 2008 and August 2022. Results were separated into two categories: Publications during training and Publications post-training.
    UNASSIGNED: As defined above, 156 Surgeons were analyzed for publications during training and post-training. The mean number of publications was 7.02 ± 17.819 post-training vs. 2.47 ± 4.313 during training, P < 0.001. The range of publication post-training was 0-124 vs. 0-30 during training. Pearson correlation between the two groups resulted in a value of 0.654, P < 0.001.
    UNASSIGNED: Higher research productivity while training correlates to higher productivity post-training, but overall Orthopaedic surgeons produce more research after training than during. With the growing importance of research, more mentorship, time, and resources must be dedicated to research to instill and foster greater participation while in training.
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  • 文章类型: Journal Article
    背景:患者和公众的参与和参与(PPIE)应作为研究人员日常实践的一部分。然而,这可能是具有挑战性的。作为高等教育机构(HEI)基础设施的一部分,为PPIE创建数字存在可能是支持这一点的一种方式。这可以支持如何向患者和公众提供信息,但人们对HEIs如何最好地做到这一点知之甚少。我们的目标是为患者和公众开发一个大学网站,以了解积极参与研究并能够访问健康和社会护理研究结果的方法。
    方法:该项目涉及与五个国家健康与护理研究所(NIHR)研究冠军合作。NIHR研究冠军是提高人们对健康和社会护理研究的认识并分享经验的志愿者。与研究冠军共同制作了原型患者公共社区研究中心网站的内容,然后来自英格兰各地的15个NIHR研究冠军被问及他们对该网站的看法。
    结果:收集的信息告诉我们,患者公共社区研究中心被认为有利于提高PPIE机会的可见性和分享研究结果,尽管需要进一步的工作:使信息更加用户友好;改进引导人们访问网站的方法,并创建与人联系的新方法。它为进一步的共同开发和评估奠定了基础。已经制定了一系列建议,这些建议可能对致力于与患者和公众合作的其他高等教育机构和组织有益。
    与患者和公众分享健康和护理研究的结果可以得到改善。在许多情况下,病人和公众没有收到他们参与的研究结果。同样,患者和公众也应该很容易找到与研究人员一起参与研究的机会。大学在为患者和公众提供参与研究发展的机会方面可发挥重要作用,以及分享他们的研究成果。为此目的创建一个在线患者公共社区研究中心是与国家健康与护理研究所(NIHR)研究冠军共同制作的。这项研究的目的是找出国家健康研究所(NIHR)内的研究志愿者,在英国,想在大学网站上找到有关健康和护理研究的信息。这项研究旨在了解如何最好地提高人们对如何参与研究的认识。它还旨在了解如何最好地分享有关研究的信息,与患者和公众一起,从一个大学网站。来自不同种族和文化背景(包括年轻人和老年人)的五个NIHR研究冠军帮助在大学网站上开发了一组网页,称为患者公共社区研究中心。一旦创建了最初的在线中心,与另外15位NIHR研究冠军进行了在线采访。访谈旨在帮助研究人员了解他们对患者公共社区研究中心的看法。对访谈结果进行了分析,并按主题分组。这些主题有助于告诉我们NIHR研究冠军认为患者和公众希望在患者公共社区研究中心看到什么,以及需要改进的领域。与NIHR研究冠军共同制作了一套建议,他们帮助塑造了患者公共社区研究中心。这些建议是给研究人员的,其他组织,或要使用的服务。这些建议以及发现可能有助于改善有关研究结果的信息共享方式以及患者和公众参与的方式。
    BACKGROUND: Patient and Public Involvement and Engagement (PPIE) should be embedded as part of researchers\' everyday practice. However, this can be challenging. Creating a digital presence for PPIE as part of Higher Education Institutes\' (HEIs) infrastructure may be one way of supporting this. This can support how information is made available to patients and members of the public, but relatively little is known about how HEIs can best do this. Our aim was to develop a university website for patients and members of the public to learn about ways to get actively involved in research and be able to access the results of health and social care research.
    METHODS: This project involved working as partners with five National Institute for Health and Care Research (NIHR) Research Champions. NIHR Research Champions are volunteers who raise awareness and share experiences about health and social care research. Content of a prototype Patient Public Community Research Hub website was co-produced with the Research Champions, and then 15 NIHR Research Champions from across England were asked for their views about the website.
    RESULTS: The information collected told us that the Patient Public Community Research Hub was viewed as being beneficial for increasing visibility of PPIE opportunities and sharing the findings of studies though needs further work: to make the information more user-friendly; to improve the methods for directing people to the site and to create new ways of connecting with people. It provides a foundation for further co-development and evaluation. A set of recommendations has been developed that may be of benefit to other HEIs and organisations who are committed to working with patients and members of the public.
    Sharing the results of health and care research studies with patients and members of the public could be improved. In many cases, patients and members of the public do not receive the results of studies they have taken part in. As well, it should also be easy for patients and members of the public to find out about opportunities to get involved with researchers in the development of their research. Universities have an important role to play in providing opportunities for patients and members of the public to be involved in the development of research studies, as well as sharing the findings of their studies. Creating an online patient public community research hub for this purpose was co-produced with National Institute for Health and Care Research (NIHR) Research Champions. The aims of this research were to find out what research volunteers within the National Institute for Health Research (NIHR), in the UK, would like to find on a university website about health and care research. This research aimed to understand how best to raise awareness about how people can get involved in research. It also aimed to understand how best to share information about research, with patients and members of the public, from a university website. Five NIHR Research Champions from diverse ethnic and cultural backgrounds (including younger and older people) helped to develop a set of webpages on a university website, called the Patient Public Community Research Hub. Once the initial online hub was created, online interviews were held with another 15 NIHR Research Champions. The interviews were to help the researcher to understand what they thought about the Patient Public Community Research Hub. The results from the interviews were analysed and grouped into themes. The themes helped to tell us what NIHR Research Champions felt patients and members of the public would want to see on the Patient Public Community Research Hub and what areas needed improving. A co-produced set of recommendations was created with the NIHR Research Champions who helped to shape the Patient Public Community Research Hub. The recommendations are for researchers, other organisations, or services to use. These recommendations along with the findings may help to improve how information gets shared about the results of research and ways in which patients and members of the public can get involved.
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  • 文章类型: Journal Article
    这篇教育文章强调了儿科泌尿外科护理研究在改善泌尿外科疾病患儿护理方面的关键作用。它讨论了儿科泌尿外科护理的多面性,解决诸如有限的护士科学家和资源限制等挑战,并强调需要克服障碍以增加研究参与。作者强调了优先考虑研究领域的重要性,促进合作,并为儿科护士提供足够的资金和学术时间,以促进循证实践,改善患者预后。此外,它强调了研究在推进护理实践中的重要性,整形协议,并倡导有泌尿科疾病的儿童及其家庭的权利和需求。
    This educational article highlights the critical role of pediatric urology nursing research in improving the care of children with urological conditions. It discusses the multifaceted nature of pediatric urology nursing, addresses challenges such as limited nurse scientists and resource constraints, and highlights the need to overcome barriers to increase research involvement. The authors emphasize the importance of prioritizing research areas, the promotion of collaboration, and the provision of adequate funding and academic time for pediatric nurses to contribute to evidence-based practice, to improve patient outcomes. Furthermore, it highlights the importance of research in advancing nursing practice, shaping protocols, and advocating for the rights and needs of children with urological conditions and their families.
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  • 文章类型: Journal Article
    背景:对青年自杀预防的研究很少涉及具有生活和生活经验的年轻人作为合作者。主要障碍包括缺乏指导原则或框架来指导合作,适当的道德审批流程,感知风险,和招聘。目的:制定指导方针,让有生活和生活经验的年轻人参与自杀研究。方法:由两个专家小组进行了Delphi专家共识研究:青年生活和生活经历小组和传统合格的研究人员小组。指南中包括了两个小组中超过80%的使用五点李克特量表被评为重要或重要的项目。结果:49位专家完成了两轮共识。指导原则组织如下:(1)编制,(2)支持安全和福祉,(3)评估参与情况,和(4)给年轻人的提示。局限性:参与者来自英语,只有西方国家。结论:这些世界首创的指南解决了让有生活和生活经历的年轻人参与自杀研究的独特挑战和机遇。
    Background: Research into youth suicide prevention rarely involves young people with lived and living experiences as collaborators. Key barriers include a lack of guidelines or frameworks to inform collaboration, appropriate ethical approval processes, perceived risk, and recruitment. Aim: To develop guidelines for involving young people with lived and living experiences in suicide research as collaborators. Method: A Delphi expert consensus study was conducted with two expert panels: a youth lived and living experiences panel and a traditionally qualified researcher panel. Items rated as essential or important using a five-point Likert scale by more than 80% of both panels were included in the guidelines. Results: Forty-nine experts completed two consensus rounds. The guidelines are organized as follows: (1) preparation, (2) supporting safety and well-being, (3) evaluating involvement, and (4) tips for young people. Limitations: Participants were from English-speaking, Western countries only. Conclusion: These world-first guidelines address the unique challenges and opportunities for involving young people with lived and living experiences in suicide research.
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  • 文章类型: Journal Article
    社交媒体数据可能会增强对患有慢性病的年轻人的疾病和治疗经验以及生活质量的了解。关于在患有慢性疾病的青年中分享用于健康研究的社交媒体数据的意愿以及共享和不共享患有慢性疾病的青年之间的健康状况差异,人们知之甚少。
    我们旨在评估患者报告的疾病症状和功能指标与分享社交媒体数据的意愿之间的关联。
    在2018年2月至2019年8月期间,在常规诊所就诊期间,有关社交媒体使用和分享社交媒体数据的意愿(因变量)的调查数据来自国家风湿病登记处的青少年.调查数据采用患者报告的疾病症状和功能指标以及疾病活动的临床指标进行分析,这是通过一项家长研究收集的。我们使用描述性统计和多变量逻辑回归来比较选择共享社交媒体数据的患有慢性疾病的年轻人和不选择共享此类数据的年轻人之间的患者报告结果。
    在112名年轻人中,(年龄:平均16.1,SD1.6y;女性:n=72,64.3%),83(74.1%)同意分享社交媒体数据。女性参与者更有可能分享(P=.04)。总之,49名(43.8%)和28名(25%)参与者查看并发布了关于风湿病的信息,分别。与非共享者相比,共享者报告了较低的移动性(T评分:平均49.0,SD9.4与平均53.9,SD8.9;P=.02)和更多的疼痛干扰(T评分:平均45.7,SD8.8与平均40.4,SD8.0;P=.005),疲劳(T评分:平均49.1,SD11.0与平均39.7,SD9.7;P<.001),抑郁(T评分:平均48.1,SD8.9与平均42.2,SD8.4;P=.003),和焦虑(T评分:平均45.2,SD9.3vs平均38.5,SD7.0;P<.001)。在调整年龄的回归分析中,性别,研究地点,和医师全球评估评分,症状每增加1个单位,就会增加分享社交媒体数据的意愿,对于疼痛干扰的测量(调整后赔率比[AOR]1.07,95%CI1.001-1.14),疲劳(AOR1.08,95%CI1.03-1.13),抑郁症(AOR1.07,95%CI1.01-1.13),和焦虑(AOR1.10,95%CI1.03-1.18)。
    使用风湿性疾病并愿意分享其社交媒体数据进行研究的青年比例很高。与非共享者相比,共享者报告的症状和功能更差。社交媒体可能为患有风湿性疾病的年轻人提供有效的信息来源和参与途径,但是在设计研究和评估社交媒体得出的结果时,共享和不共享青年之间的差异值得考虑。
    UNASSIGNED: Social media data may augment understanding of the disease and treatment experiences and quality of life of youth with chronic medical conditions. Little is known about the willingness to share social media data for health research among youth with chronic medical conditions and the differences in health status between sharing and nonsharing youth with chronic medical conditions.
    UNASSIGNED: We aimed to evaluate the associations between patient-reported measures of disease symptoms and functioning and the willingness to share social media data.
    UNASSIGNED: Between February 2018 and August 2019, during routine clinic visits, survey data about social media use and the willingness to share social media data (dependent variable) were collected from adolescents in a national rheumatic disease registry. Survey data were analyzed with patient-reported measures of disease symptoms and functioning and a clinical measure of disease activity, which were collected through a parent study. We used descriptive statistics and multivariate logistic regression to compare patient-reported outcomes between youth with chronic medical conditions who opted to share social media data and those who did not opt to share such data.
    UNASSIGNED: Among 112 youths, (age: mean 16.1, SD 1.6 y; female: n=72, 64.3%), 83 (74.1%) agreed to share social media data. Female participants were more likely to share (P=.04). In all, 49 (43.8%) and 28 (25%) participants viewed and posted about rheumatic disease, respectively. Compared to nonsharers, sharers reported lower mobility (T-score: mean 49.0, SD 9.4 vs mean 53.9, SD 8.9; P=.02) and more pain interference (T-score: mean 45.7, SD 8.8 vs mean 40.4, SD 8.0; P=.005), fatigue (T-score: mean 49.1, SD 11.0 vs mean 39.7, SD 9.7; P<.001), depression (T-score: mean 48.1, SD 8.9 vs mean 42.2, SD 8.4; P=.003), and anxiety (T-score: mean 45.2, SD 9.3 vs mean 38.5, SD 7.0; P<.001). In regression analyses adjusted for age, sex, study site, and Physician Global Assessment score, each 1-unit increase in symptoms was associated with greater odds of willingness to share social media data, for measures of pain interference (Adjusted Odds Ratio [AOR] 1.07, 95% CI 1.001-1.14), fatigue (AOR 1.08, 95% CI 1.03-1.13), depression (AOR 1.07, 95% CI 1.01-1.13), and anxiety (AOR 1.10, 95% CI 1.03-1.18).
    UNASSIGNED: High percentages of youth with rheumatic diseases used and were willing to share their social media data for research. Sharers reported worse symptoms and functioning compared to those of nonsharers. Social media may offer a potent information source and engagement pathway for youth with rheumatic diseases, but differences between sharing and nonsharing youth merit consideration when designing studies and evaluating social media-derived findings.
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  • 文章类型: Letter
    直到最近,由于年龄标准的限制,年轻人经常陷入服务之间的差距。此外,他们的声音很少听到,或者由代理人以照顾者的形式或成年人回忆他们的青春。在当前文献中,年轻人缺乏参与青少年健康研究,包括儿科和青少年慢性病的领域。然而,年轻人参与健康研究的各个阶段,从确定优先事项到传播,被广泛提倡。此外,这种参与在道德上被认为是重要的,最重要的是,是年轻人自己要求的。年轻人对研究有明确的看法,这些观点可能会增强我们对年轻人如何形成对研究的看法的理解。这些意见反过来告诉研究人员如何最好地让年轻人(包括招聘和保留)参与研究。年轻人的这种参与确保了研究问题,项目方法和/或干预措施真正与他们的生活产生共鸣。本文介绍了英国风湿病学国家青年咨询小组的发展,这是不断发展的证据基础的重要补充,以支持年轻人参与风湿病研究。这篇论文是由两个这个小组成员的年轻人写的,为他们提供了一个机会,以了解更多关于研究写作论文出版的关键组成部分。
    Until recently, young people too often fell into the gaps between services due to restrictive age criteria. Furthermore, their voice was too infrequently heard or was represented by proxies in the form of their caregivers or by adults recalling their youth. The lack of young person involvement in adolescent health research including the arena of paediatric and adolescent chronic disease has been highlighted in current literature. However, the involvement of young people at all stages of health research, from priority setting through to dissemination, is widely advocated. Furthermore, such involvement is considered to be important ethically and, most important of all, has been called for by young people themselves. Young people have clear views about research and these views potentially enhance our understanding of how young people form opinions about research. These opinions in turn informs researchers how to best engage young people (including recruitment and retention) in research. Such involvement of young people ensures that research questions, project methodologies and/or interventions are truly resonant with their lives. This paper describes the development of a national youth advisory group in UK rheumatology, an important addition to the evolving evidence base to support the involvement of young people in rheumatology research. The paper is written with two young people who are members of this group, providing them with an opportunity to learn more about a key component of research-writing papers for publication.
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