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'Trying to battle a very slow version of the system that exists outside': Experiences of waiting for healthcare in English prisons. 试图与外面非常缓慢的系统作斗争":在英国监狱中等待医疗服务的经历。
IF 1.9 4区 医学 Q3 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2024-09-01 Epub Date: 2023-08-28 DOI: 10.1177/13634593231195785
Sue Bellass, Krysia Canvin, Laura Sheard

Prison has been described as the ultimate form of time-punishment - a place where time is no longer a commodity for individuals to spend, but is ordered by a system which symbolises its power through the control of segments of people's lives. As such, a prison sentence epitomises the experience of waiting. Yet anticipating release is not the only form of waiting within carceral life; waiting for healthcare in its various forms also shapes people's temporal experience. Drawing on interviews with 21 people who have lived in prison, this article describes how experiences of waiting for healthcare are mediated by expectation or hope, perceptions of the relationship between behaviour and healthcare access, and the consequences of waiting for care. Constraints on the autonomy of people in prison mean that waiting for healthcare differs in important ways from waiting for healthcare in the community, and can be perceived as an additional form of punishment. The experience of waiting for prison healthcare can affect physical and psychological well-being, and can in itself be understood as a pain of imprisonment.

监狱被描述为时间惩罚的终极形式--在这里,时间不再是供个人挥霍的商品,而是由一个通过控制人们生活的各个环节来象征其权力的系统来安排。因此,监狱服刑是等待体验的缩影。然而,期待释放并不是监禁生活中唯一的等待形式;各种形式的医疗等待也塑造了人们的时间体验。本文通过对 21 名曾经在监狱生活过的人进行访谈,描述了等待医疗服务的经历是如何受到期望或希望、对行为与医疗服务之间关系的看法以及等待医疗服务的后果的影响的。监狱服刑人员的自主权受到限制,这意味着他们在等待医疗服务时与在社区等待医疗服务时有很大不同,而且可能被视为一种额外的惩罚形式。等待监狱医疗服务的经历会影响身心健康,其本身也可被理解为监禁的痛苦。
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引用次数: 0
Un-tracking menopause: How not using self-tracking technologies mediates women's self-experiences in menopause. 不跟踪更年期:不使用自我跟踪技术如何调节女性在更年期的自我体验。
IF 1.9 4区 医学 Q3 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2024-09-01 Epub Date: 2023-11-10 DOI: 10.1177/13634593231204171
Marjolein de Boer, Marieke Hendriks, Emiel Krahmer, Jenny Slatman, Nadine Bol

Self-tracking in general, and by women in particular is increasingly researched. In the literature, however, women's interactions with selftracking technologies in menopause-a change that (almost) every woman will go through-is largely taken for granted. This paper addresses this lacuna by asking whether and how menopausal women use self-tracking technologies, and how this (non-) usage mediates their self-experiences. In doing so, it elaborates on another understudied phenomenon: the constitutive significance of "un-tracking"-that is, of various shades and levels of not using self-tracking technologies-in menopause. Most of the 13 interviewed women in this study reported that they stopped, drastically reduced, or resisted self-tracking in menopause. By framing the discussion of these accounts of "un-tracking" within the tradition of post-phenomenology and a phenomenology of situated bodily self-awareness, we show that these women experience their bodies as (1) wise and eu-appearing, (2) unmoldable and dysappearing, and (3) longing for disappearance. Herein, their experientially mediating un-tracking practices are temporally and socio-culturally contextualized in complex ways and bear substantial existential significance. This study establishes the potential harmful ways in which self-tracking mediates self-experiences, as well as the fruitful ways in which un-tracking may do so. Against the background of this observation, this paper makes an appeal to take a step back from uncritically celebrating self-tracking in healthcare contexts, and critically evaluates whether (the promotion of) using (more) self-tracking technologies in these contexts is desirable to begin with.

对一般的自我追踪,特别是女性的自我追踪的研究越来越多。然而,在文献中,女性在更年期与自我追踪技术的互动——这是(几乎)每个女性都会经历的变化——在很大程度上被认为是理所当然的。本文通过询问更年期女性是否以及如何使用自我跟踪技术,以及这种(非)使用如何调节她们的自我体验来解决这一缺陷。在这样做的过程中,它阐述了另一个研究不足的现象:“不跟踪”的构成意义,即在更年期不使用自我跟踪技术的各种程度和层次。在这项研究中,13名受访女性中的大多数报告称,她们在更年期停止、大幅减少或抗拒自我追踪。通过在后现象学的传统和情境身体自我意识的现象学中对这些“不跟踪”的描述进行讨论,我们表明,这些女性的身体经历为(1)明智和eu出现,(2)不可塑造和不出现,以及(3)渴望消失。在此,他们的经验中介非追踪实践以复杂的方式在时间和社会文化背景下进行,并具有实质的存在意义。这项研究确立了自我追踪介导自我体验的潜在有害方式,以及不追踪可能带来的富有成效的方式。在这一观察结果的背景下,本文呼吁从在医疗保健环境中不加批判地庆祝自我追踪退一步,并批判性地评估在这些背景下使用(更多)自我跟踪技术是否是可取的。
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引用次数: 0
Loss, shame and secrecy in women's experiences of a vulval skin condition: A qualitative study. 妇女外阴皮肤病经历中的失落、羞耻和隐秘:一项定性研究。
IF 1.9 4区 医学 Q3 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2024-08-11 DOI: 10.1177/13634593241271041
Sophie Rees, Susanne Arnold

Vulval lichen sclerosus (LS) is a chronic dermatological condition affecting the anogenital area, causing intense itching, pain and bleeding. It can change the terrain of the vulva, causing loss of vulval anatomy and altered texture and appearance of the skin. There has been little research into how women experience the materialities of a dermatological vulval disease. We aimed to understand experiences of living with LS, using a feminist lens to examine the influence of societal attitudes towards women's bodies and the vulva. We conducted qualitative interviews with 20 women with vulval LS, taking a critical feminist grounded theory approach. While we found that women's experiences of vulval LS symptoms was normalised as a part of womanhood, there was a silencing of speech about the vulva generally, and vulval symptoms more specifically. This caused profound shame and loneliness, and was a barrier to disclosing and seeking help for vulval symptoms, leading to delayed diagnosis and disease progression. Loss of vulval architecture resulted in a loss of (feminine) self and the sense of a body which was whole.

外阴硬皮病(LS)是一种影响外阴部位的慢性皮肤病,可引起剧烈瘙痒、疼痛和出血。它会改变外阴的地形,导致外阴解剖结构丧失,皮肤质地和外观改变。关于妇女如何体验皮肤病外阴疾病的物质性的研究很少。我们旨在了解 LS 患者的生活体验,从女性主义的视角来审视社会对女性身体和外阴的态度所产生的影响。我们采用批判性女权主义基础理论方法,对 20 名患有外阴癌的妇女进行了定性访谈。我们发现,妇女的外阴 LS 症状经历被视为女性身份的一部分而被正常化,但对外阴以及更具体的外阴症状的言论却噤若寒蝉。这造成了深深的羞耻感和孤独感,阻碍了外阴症状的披露和寻求帮助,导致诊断延迟和疾病恶化。外阴结构的丧失导致了(女性)自我的丧失和身体完整感的丧失。
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引用次数: 0
The embodied experience of genetic inheritance in hereditary thrombophilia. 遗传性血栓性疾病的基因遗传体验。
IF 1.9 4区 医学 Q3 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2024-08-08 DOI: 10.1177/13634593241271011
Edina Tomán, Judit Nóra Pintér, Rita Hargitai

Our study focuses on exploring the embodied experiences of genetic inheritance within and between bodies. Drawing on insights from studies on embodied experiences and family risk we examine how interviewees perceive their vulnerability, negotiate family narratives, genetic inheritance, and the transmission of genetic knowledge within families. To answer these questions, we conducted an interpretative phenomenological analysis, based on 10 in-depth interviews with patients with thrombophilia diagnosis and venous thromboembolic disease, in Hungary. Three Experiential Themes were identified: The body as a repository of risk (1), Family heritage (2), and The borderline of thrombophilia-liminality (3). Our study has found that patients living with thrombophilia interpret their bodies as repositories of genetic risk. It seems that an important aspect of adapting to thrombophilia is the creation of genetically vulnerable identities. Alongside the new identity(ies), living with risk can induce newly discovered forms of familial responsibility, within the common identification experience of family history and succession. Based on our research, we see that individuals living with thrombophilia experience the liminality of borderlands. In some cases, however, the space between health and illness represents a dynamic permeability for people with thrombophilia, which can be triggered by medical uncertainty in addition to individual experiences and life events.

我们的研究重点是探索身体内部和身体之间遗传的具身体验。借鉴体现性体验和家庭风险研究的观点,我们研究了受访者如何看待自己的脆弱性、如何协商家庭叙事、遗传以及遗传知识在家庭中的传播。为了回答这些问题,我们在对匈牙利血栓性疾病诊断和静脉血栓栓塞性疾病患者的 10 次深入访谈的基础上,进行了解释性现象学分析。我们确定了三个体验主题:身体是风险的源泉(1)、家族传承(2)和血栓性疾病--临界状态(3)。我们的研究发现,血栓性疾病患者将自己的身体视为遗传风险的储存库。看来,适应血栓性疾病的一个重要方面是建立基因脆弱的身份。除了新的身份认同之外,在家族历史和继承的共同认同体验中,与风险共存也会诱发新发现的家庭责任形式。根据我们的研究,我们发现患有血栓性疾病的人经历了边缘地带的边缘性。然而,在某些情况下,健康与疾病之间的空间对于血栓性疾病患者来说是一种动态的渗透性,除了个人经历和生活事件之外,医学上的不确定性也会引发这种渗透性。
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引用次数: 0
Lesbian, gay, bisexual, transgender and queer (LGBTQ+) menopause: Literature review, knowledge gaps and research agenda. 女同性恋、男同性恋、双性恋、变性人和同性恋(LGBTQ+)更年期:文献综述、知识差距和研究议程。
IF 1.9 4区 医学 Q3 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2024-08-08 DOI: 10.1177/13634593241270923
Sue Westwood

There is growing interest in menopause discrimination in healthcare, the workplace and beyond. However, there is a dearth of research on lesbian, gay, bisexual, transgender and queer (LGBTQ+) experiences of the menopause. This article reports on a scoping review of the recent literature which identified a very limited number of articles and a wide range of knowledge gaps. This is discussed in relation to LGBTQ+ wider health, healthcare and workplace inequalities, and heteronormative and cisnormative conceptualisations of the menopause. A research agenda is proposed. Research should: be intersectional; differentiate between LGBTQ+ sub-groups; aim to understand how menopause experiences impact and are impacted by minority sexuality/gender identities; and examine how menopause healthcare and workplace support can be LGBTQ+ inclusive. Such research is urgently needed to ensure that LGBTQ+ people are fully included in menopause justice discussions and solutions.

人们越来越关注医疗保健、工作场所及其他领域的更年期歧视问题。然而,有关女同性恋、男同性恋、双性恋、变性人和同性恋者(LGBTQ+)更年期经历的研究却十分匮乏。本文报告了对近期文献进行的范围界定审查,该审查发现了数量非常有限的文章和广泛的知识差距。文章结合 LGBTQ+ 在更广泛的健康、医疗保健和工作场所的不平等现象,以及更年期的异性恋和顺性恋概念进行了讨论。提出了一项研究议程。研究应:具有交叉性;区分 LGBTQ+ 亚群体;旨在了解更年期经历如何影响少数群体的性/性别认同,以及少数群体的性/性别认同如何影响更年期经历;并研究更年期医疗保健和工作场所支持如何能够包容 LGBTQ+。迫切需要开展此类研究,以确保 LGBTQ+ 人群充分参与更年期公正讨论和解决方案。
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引用次数: 0
Pediatric oncology caregiving as narrative repair: Restor(y)ing disrupted family biographies and damaged moral identities. 作为叙事修复的儿科肿瘤护理:修复中断的家庭传记和受损的道德认同。
IF 1.9 4区 医学 Q3 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2024-08-05 DOI: 10.1177/13634593241270955
Monica L Molinaro, Jessica Polzer, Debbie Laliberte Rudman, Marie Savundranayagam

Drawing on Arthur Frank's conceptualization of narrative repair, we consider how pediatric oncology nurses restore and re-story the narratives of patients and families whose biographies have been thrown off course by the diagnosis and death of a child from cancer, as well as their own narratives as caregivers. Frank argued that when one's life story is shipwrecked by chronic or life-threatening illness, storytelling is way to reorient one's biography to a new ending, repairing the narrative wreckage created by the illness experience. In this critical narrative study with nine pediatric oncology nurses in Ontario, Canada, we highlight how, through physical, narrative, and moral proximity, nurses become entwined in their patients' and families' illness narratives, and how developing this narrative knowledge provides nurses with opportunities to steer families onto new terrain. As well, we examine how nurses re-story and repair their own identities as "good" caregivers in situations when they are prevented from acting on behalf of their pediatric cancer patients. These findings contribute to literature on illness narratives by considering narrative repair as a relational process enacted as part of pediatric oncology caregiving.

借鉴阿瑟-弗兰克(Arthur Frank)的叙事修复概念,我们考虑了儿科肿瘤科护士如何恢复和重新讲述那些因孩子被诊断出癌症并死于癌症而偏离人生轨迹的患者和家属的叙事,以及他们自己作为护理人员的叙事。弗兰克认为,当一个人的人生故事因慢性疾病或危及生命的疾病而陷入困境时,讲故事是一种方式,可以将一个人的传记重新定位到一个新的结局,修复疾病经历造成的叙事残骸。在这项对加拿大安大略省九名儿科肿瘤护士进行的关键性叙事研究中,我们强调了护士如何通过身体、叙事和道德上的接近,与病人和家属的疾病叙事纠缠在一起,以及如何发展这种叙事知识为护士提供机会,引导家属进入新的领域。此外,我们还研究了护士在无法代表儿科癌症患者采取行动的情况下,如何重新讲述和修复自己作为 "好 "护理者的身份。这些研究结果通过将叙事修复视为儿科肿瘤护理中的一个关系过程,为有关疾病叙事的文献做出了贡献。
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引用次数: 0
Reply: How do we avoid polarization of interdisciplinary research on cancer diagnosis? 答复:如何避免癌症诊断跨学科研究的两极分化?
IF 1.9 4区 医学 Q3 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2024-07-30 DOI: 10.1177/13634593241258410
Christina Sadolin Damhus, Mette Bech Risør, John Brandt Brodersen, Alexandra Brandt Ryborg Jønsson
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引用次数: 0
How do we avoid polarization of interdisciplinary research on cancer diagnosis? A critical comment to: "Rethinking the Logic of Early Diagnosis in Cancer" by Damhus, Risør, Brodersen, and Jønsson (2024). 如何避免癌症诊断跨学科研究的两极分化?评论"对 Damhus、Risør、Brodersen 和 Jønsson 所著《癌症早期诊断逻辑的反思》(2024 年)的批判性评论。
IF 1.9 4区 医学 Q3 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2024-07-25 DOI: 10.1177/13634593241258392
Rikke Sand Andersen, Michal Frumer, Camilla Hoffmann Merrild, Sara Marie Hebsgaard Offersen, Rikke Aarhus, Marie Louise Tørring
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引用次数: 0
Shaping mindful citizens: Practitioners' motivations and aspirations for mindfulness in education. 塑造有正念的公民:从业者在教育中对正念的动机和愿望。
IF 1.9 4区 医学 Q3 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2024-07-01 Epub Date: 2023-09-19 DOI: 10.1177/13634593231179024
Peter J Hemming

Mindfulness meditation has enjoyed growing popularity in the UK over the last few decades and is increasingly found in many educational settings. To date, existing empirical research on mindfulness in education has focused primarily on its efficacy, rather than more sociological concerns. This article draws on qualitative data from a major research study entitled 'Mapping Mindfulness in the UK' to investigate the motivations and aspirations of mindfulness practitioners for promoting and delivering mindfulness in educational contexts. The analysis argues that some of the existing theoretical critiques of mindfulness as a neo-liberalising self-technology are too reductive and do not take adequate account of the views and experiences of practitioners. For participants in this study, mindfulness in education was more than an individualised self-help therapeutic tool, but was instead a uniquely versatile practice, representing multiple possibilities for individuals and society. The research makes significant contributions to several fields of sociological inquiry, including on mindfulness, mental health and wellbeing, and education and citizenship.

在过去的几十年里,正念冥想在英国越来越受欢迎,并且越来越多地出现在许多教育环境中。到目前为止,现有的关于教育中正念的实证研究主要关注其功效,而不是更多的社会学问题。本文引用了一项名为“英国正念地图”的主要研究的定性数据,以调查正念从业者在教育背景下促进和提供正念的动机和愿望。分析认为,现有的一些理论批评正念是一种新自由化的自我技术,过于简化,没有充分考虑到从业者的观点和经验。对于这项研究的参与者来说,教育中的正念不仅仅是一种个性化的自助治疗工具,而是一种独特的多功能实践,代表了个人和社会的多种可能性。这项研究对社会学研究的几个领域做出了重大贡献,包括正念、心理健康和幸福、教育和公民身份。
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引用次数: 0
From embodiment to evidence: The harmful intersection of poor regulation of medical implants and obstructed narratives in embodied experiences of failed metal-on-metal hips. 从体现到证据:医疗植入物监管不力与金属髋关节失败的体现性体验中受阻叙事的有害交集。
IF 1.9 4区 医学 Q3 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2024-07-01 Epub Date: 2023-06-05 DOI: 10.1177/13634593231179026
Pauline McCormack

This research presents the results of a study about people with failed metal-on-metal hip implants, and draws on the STS concept of the technological imperative alongside research on the value of patient knowledge in clinical settings and the legitimacy of embodied stories. Popularly understood as positive and life changing, hip replacement surgery was hailed as 'the operation of the century', until a series of widespread failures of hundreds of thousands of hip implants, known collectively as metal-on-metal (MoM) hips, drew attention to the poor regulation of medical implants. This paper argues that poor regulation intersects with narratives of patients' pain, which are obstructed by surgeons and the UK regulatory body, with the effect of denying both patients' embodied experiences of implant failure, and their restitution to good health. Patient narratives about problems with their hip implant are the wellspring from which scientific evidence emerges which can indicate widespread implant failure. By obstructing these narratives the regulatory system undermines the very evidence it needs to operate effectively.

本研究介绍了一项关于金属髋关节植入物失败患者的研究结果,并借鉴了科技需求(STS)的概念,以及关于临床环境中患者知识的价值和体现故事的合法性的研究。髋关节置换手术被大众理解为积极的、改变生活的手术,被誉为 "世纪手术",直到数十万髋关节植入物(统称为金属髋关节)发生一系列大面积故障,才引起人们对医疗植入物监管不力的关注。本文认为,监管不力与外科医生和英国监管机构对患者疼痛的描述相互交织,从而否认了患者对植入物故障的亲身经历,也否认了他们恢复健康的愿望。患者对髋关节植入物问题的叙述是科学证据的源泉,而科学证据可以表明植入物普遍失效。通过阻碍这些叙述,监管系统破坏了其有效运作所需的证据。
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引用次数: 0
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