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Developing a framework to generate evidence of health outcomes from social media use in chronic disease management. 制定框架,为慢性病管理中使用社交媒体产生的健康结果提供证据。
Pub Date : 2013-08-08 eCollection Date: 2013-07-01 DOI: 10.2196/med20.2717
Mark Merolli, Kathleen Gray, Fernando Martin-Sanchez

Background: While there is an abundance of evidence-based practice (EBP) recommendations guiding management of various chronic diseases, evidence suggesting best practice for using social media to improve health outcomes is inadequate. The variety of social media platforms, multiple potential uses, inconsistent definitions, and paucity of rigorous studies, make it difficult to measure health outcomes reliably in chronic disease management. Most published investigations report on an earlier generation of online tools, which are not as user-centered, participatory, engaging, or collaborative, and thus may work differently for health self-management.

Objective: The challenge to establish a sound evidence base for social media use in chronic disease starts with the need to define criteria and methods to generate and evaluate evidence. The authors' key objective is to develop a framework for research and practice that addresses this challenge.

Methods: This paper forms part of a larger research project that presents a conceptual framework of how evidence of health outcomes can be generated from social media use, allowing social media to be utilized in chronic disease management more effectively. Using mixed methods incorporating a qualitative literature review, a survey and a pilot intervention, the research closely examines the therapeutic affordances of social media, people with chronic pain (PWCP) as a subset of chronic disease management, valid outcome measurement of patient-reported (health) outcomes (PRO), the individual needs of people living with chronic disease, and finally translation of the combined results to improve evidence-based decision making about social media use in this context.

Results: Extensive review highlights various affordances of social media that may prove valuable to understanding social media's effect on individual health outcomes. However, without standardized PRO instruments, we are unable to definitively investigate these effects. The proposed framework that we offer outlines how therapeutic affordances of social media coupled with valid and reliable PRO measurement may be used to generate evidence of improvements in health outcomes, as well as guide evidence-based decision making in the future about social media use as part of chronic disease self-management.

Conclusions: The results will (1) inform a framework for conducting research into health outcomes from social media use in chronic disease, as well as support translating the findings into evidence of improved health outcomes, and (2) inform a set of recommendations for evidence-based decision making about social media use as part of chronic disease self-management. These outcomes will fill a gap in the knowledge and resources available to individuals managing a chronic disease, their clinicians and other researchers in chronic disease and the field of

背景:虽然有大量的循证实践(EBP)建议指导各种慢性疾病的管理,但表明使用社交媒体改善健康结果的最佳实践的证据不足。社交媒体平台的多样性、多种潜在用途、不一致的定义以及缺乏严格的研究,使得在慢性疾病管理中难以可靠地衡量健康结果。大多数已发表的调查报告都是关于较早一代的在线工具,这些工具不以用户为中心、参与性、参与性或协作性,因此在健康自我管理方面可能发挥不同的作用。目的:为慢性病中社交媒体的使用建立健全的证据基础的挑战始于需要确定产生和评估证据的标准和方法。作者的主要目标是为解决这一挑战的研究和实践开发一个框架。方法:本文是一个更大的研究项目的一部分,该项目提出了一个概念框架,即如何从社交媒体的使用中产生健康结果的证据,从而使社交媒体更有效地用于慢性病管理。该研究采用定性文献综述、调查和试点干预相结合的混合方法,仔细检查了社交媒体的治疗能力、慢性疼痛患者(PWCP)作为慢性疾病管理的一个子集、患者报告(健康)结果(PRO)的有效结果测量、慢性疾病患者的个人需求、最后,对综合结果进行翻译,以提高在这种情况下关于社交媒体使用的循证决策。结果:广泛的回顾强调了社交媒体的各种功能,这些功能可能对理解社交媒体对个人健康结果的影响有价值。然而,没有标准化的PRO仪器,我们无法明确地调查这些影响。我们提出的框架概述了如何使用社交媒体的治疗能力与有效可靠的PRO测量相结合,以产生改善健康结果的证据,并指导未来将社交媒体使用作为慢性病自我管理的一部分的循证决策。结论:研究结果将(1)为慢性病患者使用社交媒体的健康结果研究框架提供信息,并支持将研究结果转化为改善健康结果的证据;(2)为将社交媒体使用作为慢性病自我管理一部分的循证决策提供一套建议。这些成果将填补个人、临床医生和其他慢性病研究人员以及医学2.0领域可用知识和资源的空白。
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引用次数: 28
How Twitter Is Studied in the Medical Professions: A Classification of Twitter Papers Indexed in PubMed. 如何在医疗行业研究Twitter:在PubMed索引的Twitter论文分类。
Pub Date : 2013-07-18 eCollection Date: 2013-07-01 DOI: 10.2196/med20.2269
Shirley Ann Williams, Melissa Terras, Claire Warwick

Background: Since their inception, Twitter and related microblogging systems have provided a rich source of information for researchers and have attracted interest in their affordances and use. Since 2009 PubMed has included 123 journal articles on medicine and Twitter, but no overview exists as to how the field uses Twitter in research.

Objective: This paper aims to identify published work relating to Twitter within the fields indexed by PubMed, and then to classify it. This classification will provide a framework in which future researchers will be able to position their work, and to provide an understanding of the current reach of research using Twitter in medical disciplines.

Methods: Papers on Twitter and related topics were identified and reviewed. The papers were then qualitatively classified based on the paper's title and abstract to determine their focus. The work that was Twitter focused was studied in detail to determine what data, if any, it was based on, and from this a categorization of the data set size used in the studies was developed. Using open coded content analysis additional important categories were also identified, relating to the primary methodology, domain, and aspect.

Results: As of 2012, PubMed comprises more than 21 million citations from biomedical literature, and from these a corpus of 134 potentially Twitter related papers were identified, eleven of which were subsequently found not to be relevant. There were no papers prior to 2009 relating to microblogging, a term first used in 2006. Of the remaining 123 papers which mentioned Twitter, thirty were focused on Twitter (the others referring to it tangentially). The early Twitter focused papers introduced the topic and highlighted the potential, not carrying out any form of data analysis. The majority of published papers used analytic techniques to sort through thousands, if not millions, of individual tweets, often depending on automated tools to do so. Our analysis demonstrates that researchers are starting to use knowledge discovery methods and data mining techniques to understand vast quantities of tweets: the study of Twitter is becoming quantitative research.

Conclusions: This work is to the best of our knowledge the first overview study of medical related research based on Twitter and related microblogging. We have used 5 dimensions to categorize published medical related research on Twitter. This classification provides a framework within which researchers studying development and use of Twitter within medical related research, and those undertaking comparative studies of research, relating to Twitter in the area of medicine and beyond, can position and ground their work.

背景:Twitter和相关的微博系统自成立以来为研究人员提供了丰富的信息来源,并吸引了人们对其功能和使用的兴趣。自2009年以来,PubMed已经收录了123篇关于医学和Twitter的期刊文章,但没有关于该领域如何在研究中使用Twitter的概述。目的:本文旨在识别PubMed索引领域中与Twitter相关的已发表作品,并对其进行分类。这种分类将提供一个框架,未来的研究人员将能够在其中定位他们的工作,并提供对使用Twitter在医学学科中研究的当前范围的理解。方法:对Twitter及相关主题的论文进行识别和综述。然后根据论文的标题和摘要对论文进行定性分类,以确定其重点。对Twitter关注的工作进行了详细研究,以确定它基于哪些数据(如果有的话),并由此开发了研究中使用的数据集大小的分类。使用开放编码内容分析,还确定了与主要方法、领域和方面相关的其他重要类别。结果:截至2012年,PubMed收录了超过2100万次生物医学文献引用,从这些文献中发现了134篇可能与Twitter相关的论文,其中11篇随后被发现不相关。微博这个词最早出现在2006年,但在2009年之前没有相关的论文。在剩下的123篇提到Twitter的论文中,有30篇是关于Twitter的(其他的只是间接提到)。早期以Twitter为重点的论文介绍了这个话题,强调了它的潜力,但没有进行任何形式的数据分析。大多数发表的论文使用分析技术对数千条(如果不是数百万条的话)单独的推文进行分类,通常依赖于自动化工具。我们的分析表明,研究人员开始使用知识发现方法和数据挖掘技术来理解大量的推文:对推特的研究正在成为定量研究。结论:本研究是我们所知的第一个基于Twitter和相关微博的医学相关研究综述。我们使用5个维度对Twitter上发表的医学相关研究进行分类。这种分类提供了一个框架,在这个框架内,研究Twitter在医学相关研究中的发展和使用的研究人员,以及从事与医学领域和其他领域的Twitter相关研究的比较研究的研究人员,可以定位和基础他们的工作。
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引用次数: 20
InSpire to Promote Lung Assessment in Youth: Evolving the Self-Management Paradigms of Young People With Asthma. 激励促进青少年肺部评估:发展青少年哮喘患者自我管理模式。
Pub Date : 2013-05-21 eCollection Date: 2013-01-01 DOI: 10.2196/med20.2014
Pierre Elias, Nithin O Rajan, Kara McArthur, Clifford C Dacso

Background: Asthma is the most common chronic disease in childhood, disproportionately affecting urban, minority, and disadvantaged children. Individualized care plans supported by daily lung-function monitoring can reduce morbidity and mortality. However, despite 20 years of interventions to increase adherence, only 50% of US youth accurately follow their care plans, which leads to millions of preventable hospitalizations, emergency room visits, and sick days every year. We present a feasibility study of a novel, user-centered approach to increasing young people's lung-function monitoring and asthma self-care. Promoting Lung Assessment in Youth (PLAY) helps young people become active managers of their asthma through the Web 2.0 principles of participation, cocreation, and information sharing. Specifically, PLAY combines an inexpensive, portable spirometer with the motivational power and convenience of mobile phones and virtual-community gaming.

Objective: The objective of this study was to develop and pilot test InSpire, a fully functional interface between a handheld spirometer and an interactive game and individualized asthma-care instant-messaging system housed on a mobile phone.

Methods: InSpire is an application for mobile smartphones that creates a compelling world in which youth collaborate with their physicians on managing their asthma. Drawing from design-theory on global timer mechanics and role playing, we incentivized completing spirometry maneuvers by making them an engaging part of a game young people would want to play. The data can be sent wirelessly to health specialists and return care recommendations to patients in real-time. By making it portable and similar to applications normally desired by the target demographic, InSpire is able to seamlessly incorporate asthma management into their lifestyle.

Results: We describe the development process of building and testing the InSpire prototype. To our knowledge, the prototype is a first-of-its kind mobile one-stop shop for asthma management. Feasibility testing in children aged 7 to 14 with asthma assessed likability of the graphical user interface as well as young people's interest in our incentivizing system. Nearly 100% of children surveyed said they would play games like those in PLAY if they involved breathing into a spirometer. Two-thirds said they would prefer PLAY over the spirometer alone, whereas 1/3 would prefer having both. No children said they would prefer the spirometer over PLAY.

Conclusions: Previous efforts at home-monitoring of asthma in children have experienced rapid decline in adherence. An inexpensive monitoring technology combined with the computation, interactive communication, and display ability of a mobile phone is a promising approach to sustainable adherence to lung-function monitoring and care plans. An exciting game that redefines the way yo

背景:哮喘是儿童时期最常见的慢性疾病,对城市儿童、少数民族儿童和弱势儿童的影响尤为严重。个性化护理计划支持每日肺功能监测可以降低发病率和死亡率。然而,尽管20年来的干预措施提高了依从性,但只有50%的美国年轻人准确地遵循了他们的护理计划,这导致每年数百万本可预防的住院、急诊室就诊和病假。我们提出了一项新的可行性研究,以用户为中心的方法来增加年轻人的肺功能监测和哮喘自我保健。促进青少年肺部评估(PLAY)通过参与、共同创造和信息共享的Web 2.0原则,帮助年轻人成为哮喘的积极管理者。具体来说,PLAY将廉价的便携式肺活量计与移动电话和虚拟社区游戏的动力和便利相结合。目的:本研究的目的是开发和试点测试InSpire,这是一个功能齐全的手持式肺活量计与互动游戏和个性化哮喘护理即时通讯系统之间的接口,安装在移动电话上。方法:InSpire是一个移动智能手机应用程序,它创造了一个令人信服的世界,在这个世界中,青少年与他们的医生合作管理他们的哮喘。根据关于全局计时器机制和角色扮演的设计理论,我们将肺活量测定操作变成年轻人想要玩的游戏的一部分,从而激励他们完成肺活量测定操作。这些数据可以无线发送给健康专家,并实时向患者返回护理建议。通过使其便携和类似于目标人群通常期望的应用程序,InSpire能够无缝地将哮喘管理融入他们的生活方式中。结果:我们描述了建立和测试InSpire原型的开发过程。据我们所知,这款原型机是首个用于哮喘管理的一站式移动设备。在7 - 14岁的哮喘儿童中进行可行性测试,评估了图形用户界面的可爱性以及年轻人对我们的激励系统的兴趣。近100%的受访儿童表示,如果他们对着肺活量计呼吸,他们会玩类似play的游戏。三分之二的人说他们更喜欢PLAY而不是单独使用呼吸量计,而三分之一的人更喜欢两者兼而有之。没有孩子说他们更喜欢呼吸量计而不是PLAY。结论:以前在儿童哮喘家庭监测方面的努力经历了依从性的迅速下降。一种廉价的监测技术结合了移动电话的计算、交互通信和显示能力,是一种有希望持续坚持肺功能监测和护理计划的方法。一个令人兴奋的游戏,重新定义了年轻人进行健康管理的方式,邀请他们更好地在健康方面进行合作,可以激励和促进更深远的目标。
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引用次数: 27
Web-based interventions for behavior change and self-management: potential, pitfalls, and progress. 基于网络的行为改变和自我管理干预:潜力、缺陷和进展。
Pub Date : 2012-08-14 eCollection Date: 2012-07-01 DOI: 10.2196/med20.1741
Elizabeth Murray

The potential advantages of using the Internet to deliver self-care and behavior-change programs are well recognized. An aging population combined with the increasing prevalence of long-term conditions and more effective medical interventions place financial strain on all health care systems. Web-based interventions have the potential to combine the tailored approach of face-to-face interventions with the scalability of public health interventions that have low marginal costs per additional user. From a patient perspective, Web-based interventions can be highly attractive because they are convenient, easily accessible, and can maintain anonymity/privacy. Recognition of this potential has led to research in developing and evaluating Web-based interventions for self-management of long-term conditions and behavior change. Numerous systematic reviews have confirmed the effectiveness of some Web-based interventions, but a number of unanswered questions still remain. This paper reviews the progress made in developing and evaluating Web-based interventions and considers three challenging areas: equity, effectiveness, and implementation. The impact of Web-based interventions on health inequalities remains unclear. Although some have argued that such interventions can increase access to underserved communities, there is evidence to suggest that reliance on Web-based interventions may exacerbate health inequalities by excluding those on the "wrong" side of the digital divide. Although most systematic reviews have found a positive effect on outcomes of interest, effect sizes tend to be small and not all interventions are successful. Further work is needed to determine why some interventions work and others do not. This includes considering the "active ingredients" or mechanism of action of these complex interventions and the context in which they are used. Are there certain demographic, psychological, or clinical factors that promote or inhibit success? Are some behaviors or some clinical problems more amenable to change by computer-based interventions? Equally problematic is the issue of implementation and integration of such programs into routine clinical practice. Many eHealth projects end when the research is concluded and fail to become part of mainstream clinical care. One way of addressing these challenges is to apply the Medical Research Council framework for developing, evaluating, and implementing complex interventions. This includes having a strong theoretical foundation, developing a proposed mechanism or pathway of action, ensuring that the evaluation adequately reflects this proposed pathway, and considering implementation from the beginning of the development process.

利用互联网提供自我护理和行为改变项目的潜在优势已得到充分认识。人口老龄化,加上长期疾病的日益流行和更有效的医疗干预措施,给所有卫生保健系统带来了财政压力。基于网络的干预有可能将面对面干预的量身定制方法与公共卫生干预的可扩展性相结合,后者每增加一个用户的边际成本较低。从患者的角度来看,基于web的干预可能非常有吸引力,因为它们方便、易于访问,并且可以保持匿名/隐私。对这一潜力的认识促使人们研究开发和评估基于网络的干预措施,以实现对长期状况和行为改变的自我管理。许多系统评价已经证实了一些基于网络的干预措施的有效性,但仍存在许多未解决的问题。本文回顾了在开发和评估基于网络的干预措施方面取得的进展,并考虑了三个具有挑战性的领域:公平、有效性和实施。基于网络的干预措施对健康不平等的影响仍不清楚。尽管有些人认为,这种干预措施可以增加服务不足社区的机会,但有证据表明,依赖基于网络的干预措施可能会将那些处于数字鸿沟“错误”一边的人排除在外,从而加剧卫生不平等。虽然大多数系统评价都发现了对目标结果的积极影响,但效应大小往往很小,而且并非所有干预措施都是成功的。需要进一步的工作来确定为什么一些干预措施有效而另一些无效。这包括考虑这些复杂干预措施的“有效成分”或作用机制及其使用背景。是否存在某种人口统计学、心理学或临床因素促进或抑制成功?某些行为或某些临床问题是否更容易通过计算机干预来改变?同样有问题的是如何将这些项目纳入常规临床实践。许多电子健康项目在研究结束后就结束了,未能成为主流临床护理的一部分。应对这些挑战的一种方法是应用医学研究理事会制定、评估和实施复杂干预措施的框架。这包括具有强大的理论基础,制定拟议的机制或行动途径,确保评估充分反映拟议的途径,并从开发过程开始考虑实施。
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引用次数: 196
Physicians' motives for professional internet use and differences in attitudes toward the internet-informed patient, physician-patient communication, and prescribing behavior. 医生使用专业互联网的动机和对互联网知情患者、医患沟通和处方行为的态度差异。
Pub Date : 2012-07-06 eCollection Date: 2012-07-01 DOI: 10.2196/med20.1996
Martina Moick, Ralf Terlutter

Background: Physicians have differing motives for using the Internet and Internet-related services in their professional work. These motives may affect their evaluation of patients who bring with them health-related information from the Internet. Differing motives may also affect physician-patient communication and subsequent prescribing behavior.

Objectives: to segment physicians into types based on their motives for using the internet in connection with professional activities and to analyze how those segments differ in their attitudes in three areas: toward patients who bring along Internet-sourced information; in their own subsequent prescribing behavior; and in their attitudes toward using the Internet to communicate with patients in future.

Methods: We surveyed 287 German physicians online from three medical fields. To assess physicians' motives for using the Internet for their professional activities, we asked them to rate their level of agreement with statements on a 7-point scale. Motive statements were reduced to motive dimensions using principal component analysis, and 2-step cluster analysis based on motive dimensions identified different segments of physicians. Several statements assessed agreement or disagreement on a 7-point scale physicians' attitudes toward patients' bringing Internet information to the consultation and their own subsequent prescribing behavior. Further, we asked physicians to indicate on a 7-point scale their valuation of the Internet for physician-patient communication in the future. Data were then subjected to variance and contingency analyses.

Results: we identified three motive dimensions for internet use: (1) being on the cutting edge and for self-expression (Cronbach alpha = .88), (2) efficiency and effectiveness (alpha = .79), and (3) diversity and convenience (alpha = .71). These three factors accounted for 71.4% of the variance. Based on physicians' motives for using the Internet, four types of physician Internet user were identified: (1) the Internet Advocate (2), Efficiency-Oriented, (3) Internet Critic, and (4) Driven Self-expressionist. Groups differed significantly concerning (1) their attitude toward informed patients in general (F 1234 = 9.215, P < .001), (2) perceived improvement in the physician-patient relationship Internet information brings (F 1234 = 5.386, P < .001), (3) perceived accuracy of information the patient brings (F 1234 = 3.658, P = .01), and (4) perceived amount of time needed to devote to an Internet-informed patient (F 1234 = 3.356, P = .02). Physician segments did not differ significantly in reported prescribing behavior (F 1234 = 1.910, P = .13). However, attitudes toward using the Internet to communicate with patients in future differed significantly (F 1234 = 23.242, P < .001).

Conclusions: Based on self-reporting by German physicians of their motives for profess

背景:医生在其专业工作中使用互联网和互联网相关服务的动机不同。这些动机可能会影响他们对从互联网上获取健康相关信息的患者的评价。不同的动机也可能影响医患沟通和随后的处方行为。目标:根据医生在专业活动中使用互联网的动机,将他们划分为不同的类型,并分析这些部分在三个方面的态度差异:对携带互联网来源信息的患者;在他们自己随后的处方行为中;以及他们对未来使用互联网与患者沟通的态度。方法:我们在线调查了来自三个医学领域的287名德国医生。为了评估医生在专业活动中使用互联网的动机,我们要求他们以7分制对他们对陈述的同意程度进行评分。使用主成分分析将动机陈述简化为动机维度,基于动机维度的两步聚类分析确定了不同的医生群体。一些陈述以7分制评估了医生对患者将互联网信息带到会诊的态度和他们自己随后的处方行为的同意或不同意。此外,我们要求医生以7分制表示他们对未来医患沟通的互联网的评价。然后对数据进行方差和偶然性分析。结果:我们确定了互联网使用的三个动机维度:(1)处于前沿和自我表达(Cronbach α = 0.88),(2)效率和有效性(α = 0.79),(3)多样性和便利性(α = 0.71)。这三个因素占方差的71.4%。基于医生使用互联网的动机,可以将医生互联网用户划分为四种类型:(1)互联网倡导者(2)、效率导向型(Efficiency-Oriented)、网络批评者(3)和驱动型自我表现主义者(4)。各组在以下方面存在显著差异:(1)对知情患者的总体态度(F 1234 = 9.215, P < .001);(2)感知到互联网信息带来的医患关系改善(F 1234 = 5.386, P < .001);(3)感知到患者带来的信息的准确性(F 1234 = 3.658, P = .01);(4)感知到为知情患者投入的时间(F 1234 = 3.356, P = .02)。各医生组别在报告的处方行为上无显著差异(f1234 = 1.910, P = 0.13)。但对未来使用互联网与患者沟通的态度差异有统计学意义(F 1234 = 23.242, P < 0.001)。结论:基于德国医生对其专业互联网使用动机的自我报告,我们确定了四种类型的互联网用户,他们对携带互联网信息的患者的态度以及他们对未来使用互联网与患者交流的态度存在显著差异。
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引用次数: 35
ePatients on YouTube: analysis of four experiences from the patients' perspective. YouTube上的病人:从病人的角度分析四种经历。
Pub Date : 2012-04-25 eCollection Date: 2012-01-01 DOI: 10.2196/med2.2039
Beni Gómez-Zúñiga, Luis Fernandez-Luque, Modesta Pousada, Eulàlia Hernández-Encuentra, Manuel Armayones

Background: Many patients share their personal experiences and opinions using online video platforms. These videos are watched by millions of health consumers and health care professionals. Although it has become a popular phenomenon, little is known about patients who share videos online and why they do so.

Objective: We aimed to explore the motivations and challenges faced by patients who share videos about their health and experiences on YouTube. As part of a conference discussion, we asked several patients actively engaged on YouTube to make a video explaining their motivations. This paper discusses these videos.

Methods: In this qualitative study, we performed an analysis of the videos created by 4 patients about their self-reported motivations and challenges they face as YouTube users. First, two judges compared the transcriptions and decided the exact wording when confusing content was found. Second, two judges categorized the content of the videos to identify the major themes.

Results: four main categories emerged: (1) the origin or cause for making the first video, (2) the objectives that they achieve by continuing to make videos, (3) the perception of community, and (4) the negative consequences of the experience.

Conclusions: The main reason for making videos was to bridge the gap between traditional health information about their diseases and everyday life. The first consequence of sharing their life on YouTube was a loss of privacy. However, they also experienced the positive effects of expressing their feelings, being part of a large community of peers, and helping others to deal with a chronic condition.

背景:许多患者通过网络视频平台分享个人经历和意见。这些视频被数百万保健消费者和保健专业人员观看。尽管这已经成为一种流行现象,但人们对在网上分享视频的患者以及他们这样做的原因知之甚少。目的:我们旨在探讨患者在YouTube上分享他们的健康和经历视频的动机和面临的挑战。作为会议讨论的一部分,我们要求几位在YouTube上积极参与的患者制作一段视频,解释他们的动机。本文将讨论这些视频。方法:在这个定性研究中,我们对4名患者制作的视频进行了分析,分析了他们作为YouTube用户的自我报告动机和面临的挑战。首先,两名法官对抄本进行比较,在发现令人困惑的内容时确定准确的措辞。其次,两位评委对视频内容进行分类,以确定主要主题。结果:出现了四个主要类别:(1)制作第一个视频的起源或原因,(2)他们通过继续制作视频实现的目标,(3)社区的感知,以及(4)体验的负面后果。结论:制作视频的主要原因是为了弥合关于他们疾病的传统健康信息与日常生活之间的差距。在YouTube上分享生活的第一个后果是隐私的丧失。然而,他们也经历了表达自己的感受,成为同龄人大社区的一部分,并帮助他人应对慢性疾病的积极影响。
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引用次数: 28
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