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Online Health Communities in Controversy over ME/CFS and Long Covid 在线健康社区对ME/CFS和长Covid的争议
Pub Date : 2023-03-24 DOI: 10.47368/ejhc.2023.203
Sally Jackson
The condition known variously as myalgic encephalomyelitis, chronic fatigue syndrome, or ME/CFS has been steeped in controversy for 40 years or more. Long Covid, first noticed and named in 2020, has become entangled with the ME/CFS controversy because of striking similarities in the experiences of patients suffering from the two illnesses. Online health communities (OHCs) have played central roles in both controversies, but these are not the kinds of roles that have been so well-documented in prior literature. While prior research has established many ways in which participation in an OHC may benefit or otherwise affect community members themselves, this essay focuses on how OHCs contribute to positional shifts in health controversies that involve other communities as well. Using a framework for understanding health controversies as argumentative polylogues, I show that OHCs arguing with other players have made contributions that are both effective in gaining ground for the OHCs' own goals and in elevating the overall quality of the debate. Further, in some cases these contributions have been so innovative as to suggest surprising future trajectories for OHCs.
这种疾病被称为肌痛性脑脊髓炎、慢性疲劳综合征或ME/CFS,已经陷入了40多年的争议中。长冠状病毒于2020年首次被发现并命名,它与ME/CFS争议纠缠在一起,因为患有这两种疾病的患者的经历惊人地相似。在线健康社区(ohc)在这两个争议中都扮演了核心角色,但这些角色在之前的文献中并没有得到很好的记载。虽然先前的研究已经确定了参与OHC可能使社区成员受益或以其他方式影响社区成员本身的许多方式,但本文侧重于OHC如何促进涉及其他社区的健康争议中的位置转变。我使用一个将健康争议理解为争论性多语的框架,表明OHCs与其他参与者的争论做出了贡献,既有效地为OHCs自己的目标取得了进展,又提高了辩论的整体质量。此外,在某些情况下,这些贡献是如此具有创新性,以至于对OHCs的未来轨迹提出了令人惊讶的建议。
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引用次数: 0
Consultations Preliminary to Interdisciplinary Chronic Pain Rehabilitation 跨学科慢性疼痛康复初步会诊
Pub Date : 2023-03-20 DOI: 10.47368/ejhc.2023.202
Baukje B. Stinesen, Petra Sneijder, A. Köke, R. Smeets
Before patients with chronic pain enter an interdisciplinary chronic pain rehabilitation programme, a team of various healthcare professionals performs a biopsychosocial analysis of their pain problem. To enhance patients’ engagement, the problem analysis is thoroughly discussed with them in order to gain a shared understanding of the nature of their pain problem. This study explores how patients and practitioners talk through their rehabilitation team’s hypotheses regarding the psychosocial factors involved in these patients’ health situation. Nine consultations were recorded at various Dutch interdisciplinary chronic pain rehabilitation units. The recordings were transcribed and analysed, combining an applied conversation analytic research approach with discursive psychology. Patients and practitioners are found to orient to ensuring consensus on the problem analysis as a relevant activity and tend to avoid or minimize the articulation of differences in perspectives. This study also shows that this orientation to consensus involves a delicate management of issues of accountability and blame. Findings can be used by practitioners to consider communication practices that are more likely to encourage patients to voice potential concerns regarding their rehabilitation team’s findings.
在慢性疼痛患者进入跨学科慢性疼痛康复计划之前,一个由各种医疗保健专业人员组成的团队对他们的疼痛问题进行生物心理社会分析。为了提高患者的参与度,问题分析与他们进行了彻底的讨论,以获得对疼痛问题本质的共同理解。本研究探讨病人和医生如何谈论他们的康复团队关于这些病人健康状况所涉及的社会心理因素的假设。在荷兰不同的跨学科慢性疼痛康复单位记录了9次咨询。将应用会话分析研究方法与话语心理学相结合,对录音进行转录和分析。发现患者和从业人员倾向于将问题分析作为一项相关活动来确保达成共识,并倾向于避免或尽量减少观点差异的表达。这项研究还表明,这种协商一致的倾向涉及对问责和指责问题的微妙管理。研究结果可以被从业者用来考虑更有可能鼓励患者表达对康复团队研究结果的潜在担忧的沟通实践。
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引用次数: 0
Accounting for Sexual Issues Related to Cancer 与巨蟹座有关的性问题
Pub Date : 2023-03-03 DOI: 10.47368/ejhc.2023.201
Irene Kelder, Petra Sneijder, Annette Klarenbeek, T. Roseboom, E. Laan
Cancer and its treatments cause significant changes in sexuality that affect the quality of life of both patients and their partners. As these issues are not always discussed with healthcare professionals, cancer patients turn to online health communities to find answers to questions or for emotional support pertaining to sexual issues. By using a discursive psychological perspective, we explore the social actions that participants in online health forums perform when discussing sexuality. Data were collected by entering search terms in the search bars of three online health forums. Our analysis of 213 threads, containing 1,275 posts, provides insight into how participants who present themselves as women with cancer account for their sexual issues and, in doing so, orient to two intertwined norms: Having untroubled sex is part of a couple’s relationship, and male partners are entitled to having untroubled sex. We discuss the potential harmful consequences of orienting to norms related to sexual behaviour. Yet, our findings can also help healthcare professionals in broaching the topic of sexuality in conversations with cancer patients. The insights of this study into what female patients themselves treat as relevant can assist health professionals in better aligning with patients’ interactional concerns.
癌症及其治疗会导致性行为发生重大变化,从而影响患者及其伴侣的生活质量。由于这些问题并不总是与医疗保健专业人员讨论,癌症患者转向在线健康社区寻找问题的答案或与性问题有关的情感支持。通过运用话语心理学的观点,我们探讨了在线健康论坛参与者在讨论性行为时的社会行为。通过在三个在线健康论坛的搜索栏中输入搜索词来收集数据。我们分析了213个帖子,包含1275个帖子,深入了解了以癌症女性身份出现的参与者如何解释自己的性问题,并在此过程中定位于两个相互交织的规范:无忧无虑的性生活是夫妻关系的一部分,男性伴侣有权享受无忧无虑的性生活。我们讨论了与性行为相关的规范导向的潜在有害后果。然而,我们的发现也可以帮助医疗保健专业人员在与癌症患者交谈时提出性话题。本研究对女性患者自身治疗相关的见解可以帮助卫生专业人员更好地与患者的互动关注保持一致。
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引用次数: 0
Who Is (Held) Responsible for Diabetes and Depression? 谁应该为糖尿病和抑郁症负责?
Pub Date : 2023-02-23 DOI: 10.47368/ejhc.2023.103
Linn Julia Temmann
Responsibility frames and attributions of responsibility are closely linked to health-related stigma and social support intentions, which present relevant influencing factors for health outcomes. According to social-ecological models, health responsibility can potentially be attributed to at least three levels: 1) the individual, 2) the social network, and 3) society. So far, little is known about responsibility attributions to the social network. This qualitative interview study explores how N = 22 persons with and without lived experience with diabetes and depression react to a media frame attributing responsibility to the social network level, aiming to understand how framing and responsibility attributions are linked to health-related stigma and endorsement of social support. Results demonstrate that specifically type 2 diabetes is linked to individually controllable attributions and behavioural stigma, and individuals living with type 2 diabetes are expected to manage their condition without considerable social support. In contrast, depression is seen as less controllable, less manageable, and dependent on social and professional support. For both diabetes and depression, frames attributing responsibility to the social network may stimulate social support but also carry certain risks. These results offer implications for health news reporting, and perspectives for further research on health-related responsibility framing.
责任框架和责任归因与健康相关的污名和社会支持意愿密切相关,这是健康结果的相关影响因素。根据社会生态模型,健康责任可以潜在地归因于至少三个层面:1)个人,2)社会网络和3)社会。到目前为止,人们对社会网络的责任归因知之甚少。本定性访谈研究探讨了N = 22名有或没有糖尿病和抑郁症生活经历的人对将责任归因于社会网络水平的媒体框架的反应,旨在了解框架和责任归因如何与健康相关的耻辱和社会支持的认可相关联。研究结果表明,具体来说,2型糖尿病与个体可控的归因和行为污名有关,2型糖尿病患者预计在没有大量社会支持的情况下控制自己的病情。相比之下,抑郁症被认为是难以控制的,难以管理的,并且依赖于社会和专业的支持。对于糖尿病和抑郁症,将责任归咎于社会网络的框架可能会刺激社会支持,但也会带来一定的风险。这些结果为健康新闻报道提供了启示,并为进一步研究健康相关责任框架提供了视角。
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引用次数: 2
How Social Media, News Media and Interpersonal Communication Relate to Covid-19 Risk Perceptions and Behaviours 社交媒体、新闻媒体和人际传播如何与Covid-19风险认知和行为相关
Pub Date : 2023-02-13 DOI: 10.47368/ejhc.2023.102
Robyn Vanherle, Sebastian Kurten, Ann Rousseau
To inhibit the spread of the Covid-19 virus, several governmental guidelines (e.g., social contact, vaccination) were proposed. Whether or not these protective behaviours are implemented often depends on citizens’ risk perceptions which, according to previous research, are formed by social media, news media, and interpersonal communications. However, previous research is limited in two ways. First, research mostly focused on adults, thereby neglecting emerging adults who are less affected but equally needed to adhere to the rules. Second, research mainly measured behaviours at one-time point and studied between-person associations, thereby neglecting short-term within-person effects. We therefore conducted a daily diary study among 208 emerging adults (Mage = 21.63, SDage = 1.15) and examined which communication channels increased Covid-19 risk perceptions (i.e., perceived personal susceptibility and societal severity) and, in turn, individuals’ willingness to get vaccinated and follow Covid-19 rules. The results showed that only news media predicted societal severity on the within-level and that severity, in turn, predicted willingness to get vaccinated and follow rules at the between-level. Additionally, social media predicted interpersonal conversations about Covid-19 at the between-and within-level. Overall, this study highlights the importance of news media in affecting emerging adults’ health perceptions and behaviours during a crisis.
为了抑制Covid-19病毒的传播,政府提出了几项指导方针(例如,社会接触、疫苗接种)。这些保护行为是否得到实施往往取决于公民的风险认知,根据之前的研究,公民的风险认知是由社交媒体、新闻媒体和人际沟通形成的。然而,之前的研究在两个方面受到限制。首先,研究主要集中在成年人身上,从而忽视了受影响较小但同样需要遵守规则的新兴成年人。其次,研究主要测量一次性行为,研究人与人之间的联系,从而忽略了短期的人际影响。因此,我们对208名新生成人(Mage = 21.63, SDage = 1.15)进行了每日日记研究,并检查了哪些沟通渠道增加了Covid-19风险认知(即感知到的个人易感性和社会严重性),以及个人接种疫苗和遵守Covid-19规则的意愿。结果表明,只有新闻媒体在内部水平上预测了社会严重程度,而严重程度反过来又预测了接种疫苗和遵守规则的意愿。此外,社交媒体预测了人与人之间和内部关于Covid-19的对话。总的来说,这项研究强调了新闻媒体在危机期间影响新兴成年人健康观念和行为的重要性。
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引用次数: 0
The Protective Role of Social-Oriented Digital Media Use in Children’s and Adolescents’ Life Satisfaction During the Covid-19 Pandemic Covid-19大流行期间,社交型数字媒体使用对儿童和青少年生活满意度的保护作用
Pub Date : 2023-01-19 DOI: 10.47368/ejhc.2023.101
L. Marciano, E. Albanese, K. Viswanath, A. Camerini
Covid-19 measures have reduced children’s and adolescents’ life satisfaction (LS), a key indicator of well-being. However, we have limited evidence of the longitudinal associations between changes in LS and different types of digital media use throughout the pandemic. Using data collected in Ticino, Italian-speaking Switzerland from 764 children and adolescents (Mage = 12.51, SDage = 4.00, 52% females) over five months starting from September 2020, the current study investigated temporal variations in LS, and how process-oriented versus social-oriented digital media use predicted LS, controlling for socio-demographic variables. Results of the quadratic latent growth curve model showed a steeper decrease in LS at the beginning of the second wave of the pandemic in Autumn 2020. Process-oriented digital media use predicted lower starting levels (i.e., the intercept) of LS, whereas social-oriented digital media use acted as a protective factor against the initial decrement of LS (i.e., linear slope) and positively influenced the rate of change of LS (i.e., the quadratic slope), pointing towards a faster return to baseline levels. Females, adolescents, participants with low subjective socio-economic status, and non-Swiss participants reported lower levels of LS. Results suggest that when in-person social contacts are compromised, social-oriented use of digital technologies should be promoted in young people to obtain and maintain social contacts that are crucial for LS and their well-being. LS may be conceived as a predisposing condition to accumulate, preserve, and restore mental and social well-being, which, in turn, allow individuals to contribute to their community and society at large.
Covid-19措施降低了儿童和青少年的生活满意度(LS),这是衡量幸福的一项关键指标。然而,在整个大流行期间,我们对LS变化与不同类型数字媒体使用之间的纵向关联的证据有限。本研究使用从2020年9月开始的五个月内在瑞士意大利语区提奇诺州收集的764名儿童和青少年(Mage = 12.51, SDage = 4.00, 52%为女性)的数据,调查了LS的时间变化,以及在控制社会人口变量的情况下,以过程为导向与以社交为导向的数字媒体使用如何预测LS。二次潜增长曲线模型结果显示,在2020年秋季第二波大流行开始时,LS下降幅度更大。以过程为导向的数字媒体使用预示着较低的LS起始水平(即截距),而以社交为导向的数字媒体使用充当了防止LS初始衰减(即线性斜率)的保护因素,并积极影响了LS的变化率(即二次斜率),指向更快地返回基线水平。女性、青少年、主观社会经济地位低的参与者和非瑞士参与者报告的LS水平较低。结果表明,当面对面的社会联系受到损害时,应促进年轻人以社会为导向使用数字技术,以获得和维持对LS及其福祉至关重要的社会联系。LS可以被认为是一种积累、保存和恢复精神和社会福祉的倾向条件,这反过来又允许个人为他们的社区和整个社会做出贡献。
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引用次数: 0
The Ambivalent Role of Social Aspects in Health Promotion 社会因素在健康促进中的矛盾作用
Pub Date : 2022-12-09 DOI: 10.47368/ejhc.2022.309
Paula Stehr, C. Rossmann, Tabea Kremer, H. Luetke Lanfer
Through various mechanisms such as social comparison, social control, and social support, social networks may impose both positive and negative effects on people’s health. The purpose of this brief research report is to highlight the role of social aspects in health promotion in the context of evidence-based communication strategies to promote physical activity among older adults in Germany. Results are based on a two-study formative research project, combining 20 semi-structured interviews with a telephone survey of a representative sample of 1,001 older adults. They show that interpersonal communication is an important source of health information. However, a strong normative influence of the social network may also undermine self-determined motivation to be physically active and therefore decrease activity levels in the long-term. In contrast, feeling related to others and being able to exercise together with other people can facilitate physical activity for older adults, which underlines the ambivalent role of social aspects. Hence, (interpersonal) communication aiming at the promotion of physical activity among older adults should support their perceived autonomy by explaining potential health and social consequences of the behaviour, providing choices, and acknowledging individual barriers and facilitators such as (lack of) sports companions.
社会网络可以通过社会比较、社会控制和社会支持等多种机制对人们的健康产生积极和消极的影响。这份简短的研究报告的目的是强调社会方面在促进健康方面的作用,在以证据为基础的沟通策略的背景下,促进德国老年人的身体活动。结果基于两项研究的形成性研究项目,结合了20次半结构化访谈和对1001名老年人代表性样本的电话调查。它们表明人际交往是健康信息的重要来源。然而,社会网络的强烈规范影响也可能破坏自我决定的运动动机,从而降低长期的运动水平。相比之下,感觉与他人相关,能够与其他人一起锻炼,可以促进老年人的身体活动,这强调了社会方面的矛盾作用。因此,旨在促进老年人身体活动的(人际)沟通应通过解释这种行为的潜在健康和社会后果、提供选择并承认个人障碍和促进因素(如缺乏)运动伙伴,来支持老年人感知到的自主性。
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引用次数: 0
The Performance of the Health Communication Assessment Tool© (HCAT-f) in Calibrating Different Levels of Nurse Communication Skills in a French-Speaking Context 健康沟通评估工具©(HCAT-f)在法语背景下校准不同水平护士沟通技巧的表现
Pub Date : 2022-12-07 DOI: 10.47368/ejhc.2022.308
A. Diep, J. Servotte, N. Dardenne, S. Vanbelle, Vanessa Wauthier, Méryl Paquay, S. Campbell, Jonathan Goffoy, A. Donneau, A. Ghuysen
Communication skills training is essential in nurse education. Miscommunication may lead to adverse events and unsafe healthcare. To date, valid and reliable instruments to serve both communication training and assessment purposes across different cultural contexts are scarce. The present study empirically tested a French-language version of the Health Communication Assessment Tool© (HCAT-f) across different levels of communication skills performance to establish its reliability and validity through a cognitive fluency framework. Ten experts in communication and 52 nurse educators rated three videos simulating conversations between a nurse and a patient scheduled for lumpectomy. Each video captured a different level of communication skills performed by the nurse: High, medium, and low. Three distinct constructs were identified, i.e., professional presentation, empathy, and trust building. At absolute single-measure, an ICC = .43 suggested adequate interrater reliability of the whole scale for the medium-performed scenario, which decreased in low-performed (ICC = .35) and high-performed (ICC = .18) scenarios. The HCAT-f fulfils the criteria of linguistic equivalence, contextual relevance, and demonstrates acceptable construct validity. It can be used as a summative assessment tool after prior training on scale calibration is in place because interrater agreement was difficult to be established in high and low performance scenarios. 
沟通技巧训练在护士教育中是必不可少的。沟通不畅可能导致不良事件和不安全的医疗保健。迄今为止,有效和可靠的工具,以服务于沟通培训和评估目的在不同的文化背景是稀缺的。本研究对法语版健康沟通评估工具©(HCAT-f)在不同水平的沟通技巧表现进行了实证测试,以通过认知流畅性框架建立其信度和效度。10位沟通专家和52位护士教育者对三段模拟护士和计划进行乳房肿瘤切除术的病人之间对话的视频进行了评分。每个视频都记录了护士表现出的不同水平的沟通技巧:高、中、低。三个不同的构念被确定,即专业表达、同理心和信任建立。在绝对单测量中,ICC = 0.43表明整个量表在中等表现情景中具有足够的量表间信度,而在低表现(ICC = 0.35)和高表现(ICC = 0.18)情景中则有所下降。HCAT-f满足语言对等、语境关联和可接受结构效度的标准。由于在高性能和低性能场景下难以建立相互间的一致,因此在对比例尺校准进行事先培训后,它可以用作总结性评估工具。
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引用次数: 0
The Effects of Teacher Communication During a Health Intervention on Older Adolescents’ Predictors of Health Behaviour 健康干预中教师沟通对大龄青少年健康行为预测因子的影响
Pub Date : 2022-11-24 DOI: 10.47368/ejhc.2022.307
M. Mesman, H. Hendriks, S. Onrust, B. van den Putte
This study investigated the influence of teacher communication behaviours on predictors of alcohol use, snack intake, and physical exercise during a school-based health intervention. Additionally, we investigated whether students’ evaluations of the intervention mediated these effects. In a two-way prospective study, 389 adolescents (222 females; Mage = 16.64, SDage = 1.97) completed a survey. Key variables were teacher communication behaviours (i.e., clarity, verbal immediacy, and content relevance), predictors (i.e., attitudes, social norms, perceived behavioural control, and intentions) of alcohol use, snack intake, and physical exercise, and students’ evaluations of the health intervention were investigated. Results showed that teacher clarity resulted in significantly healthier injunctive norms and higher perceived behavioural control regarding alcohol use, and for exercise in significantly healthier attitudes, descriptive norms, and intentions to exercise. No effects of teacher clarity were found for snack intake. Furthermore, teacher clarity, verbal immediacy, and content relevance did not indirectly result in healthier predictors of health behaviour through evaluations of the intervention. Findings support the role of teacher clarity for intervention effectiveness, and advise designers of health interventions to incorporate the role of teacher clarity in their teacher training programs to achieve more desired changes in health behaviour.
本研究调查了在学校健康干预期间,教师沟通行为对酒精使用、零食摄入和体育锻炼预测因子的影响。此外,我们调查了学生对干预的评价是否介导了这些影响。在一项双向前瞻性研究中,389名青少年(222名女性;法师= 16.64,SDage = 1.97)完成了一项调查。关键变量是教师的沟通行为(即清晰度,语言即得性和内容相关性),预测因素(即态度,社会规范,感知行为控制和意图),酒精使用,零食摄入和体育锻炼,以及学生对健康干预的评价进行了调查。结果表明,教师的清晰性导致了更健康的禁令规范和对酒精使用的更高的感知行为控制,并导致了更健康的态度、描述性规范和锻炼意图。没有发现零食摄入对教师清晰度的影响。此外,通过对干预的评估,教师的清晰性、言语即时性和内容相关性并没有间接导致健康行为的更健康的预测因子。研究结果支持教师明确对干预措施有效性的作用,并建议卫生干预措施的设计者将教师明确的作用纳入其教师培训计划,以实现更理想的健康行为变化。
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引用次数: 3
How Informed are the Swiss about Covid-19 and Prevention Measures? 瑞士人对Covid-19和预防措施的了解程度如何?
Pub Date : 2022-10-26 DOI: 10.47368/ejhc.2022.306
S. Kessler, Miriam S. Cano Pardo, Anna Jobin, F. Georgi
Since the coronavirus (SARS-CoV-2) pandemic began, large amounts of (mis)information have been disseminated worldwide. We conducted an online survey in Switzerland (N = 1,129) in April 2021 to ask respondents which information has received too little attention in public discourse, which measures help containing coronavirus infection and Covid-19, and about subjectively perceived Covid-19 misinformation. Content analysis of the open answers revealed that vaccination and its potential side effects, aspects related to political measures, psychological and social aspects, as well as science and research topics deserved more attention in the eyes of the respondents, mostly from politics or media. The most frequently mentioned effective measures were social distancing, wearing masks, general hygiene, and vaccination. Notably, the number of measures mentioned was related to the degree to which the pandemic affected individuals subjectively, trust in public institutions, and their individual level of science-related populism. Swiss residents with less trust in public institutions and who consume less news media on Covid-19 are more likely to believe misinformation on (in)effective measures against the virus. Most respondents encountered Covid-19 misinformation and could name examples, including sources. Education and information use affect the frequency of subjectively encountered misinformation. More highly educated people can name more misinformation instances encountered than less educated people.
自冠状病毒(SARS-CoV-2)大流行开始以来,大量(错误)信息在全球传播。我们于2021年4月在瑞士进行了一项在线调查(N = 1129),询问受访者哪些信息在公共话语中受到的关注太少,哪些措施有助于遏制冠状病毒感染和Covid-19,以及主观上认为的Covid-19错误信息。对公开答案的内容分析显示,疫苗接种及其潜在的副作用、与政治措施有关的方面、心理和社会方面以及科学和研究课题在受访者眼中更值得关注,主要来自政治或媒体。最常提到的有效措施是保持社交距离、戴口罩、一般卫生和接种疫苗。值得注意的是,提到的措施数量与疫情对个人的主观影响程度、对公共机构的信任程度以及个人与科学有关的民粹主义程度有关。对公共机构信任度较低、对新冠肺炎新闻媒体消费较少的瑞士居民,更有可能相信有关有效措施的错误信息。大多数受访者都遇到过关于Covid-19的错误信息,并能举出例子,包括来源。教育和信息使用影响主观上遇到错误信息的频率。受教育程度较高的人比受教育程度较低的人能说出更多遇到的错误信息。
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引用次数: 1
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European Journal of Health Communication
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