Pub Date : 2024-09-01Epub Date: 2023-08-28DOI: 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.
{"title":"'Trying to battle a very slow version of the system that exists outside': Experiences of waiting for healthcare in English prisons.","authors":"Sue Bellass, Krysia Canvin, Laura Sheard","doi":"10.1177/13634593231195785","DOIUrl":"10.1177/13634593231195785","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":12944,"journal":{"name":"Health","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11323424/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10082373","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-09-01Epub Date: 2023-11-10DOI: 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.
{"title":"Un-tracking menopause: How not using self-tracking technologies mediates women's self-experiences in menopause.","authors":"Marjolein de Boer, Marieke Hendriks, Emiel Krahmer, Jenny Slatman, Nadine Bol","doi":"10.1177/13634593231204171","DOIUrl":"10.1177/13634593231204171","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":12944,"journal":{"name":"Health","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11323410/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"72014052","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-08-11DOI: 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。
{"title":"Loss, shame and secrecy in women's experiences of a vulval skin condition: A qualitative study.","authors":"Sophie Rees, Susanne Arnold","doi":"10.1177/13634593241271041","DOIUrl":"https://doi.org/10.1177/13634593241271041","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":12944,"journal":{"name":"Health","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-08-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141916591","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-08-08DOI: 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.
{"title":"The embodied experience of genetic inheritance in hereditary thrombophilia.","authors":"Edina Tomán, Judit Nóra Pintér, Rita Hargitai","doi":"10.1177/13634593241271011","DOIUrl":"https://doi.org/10.1177/13634593241271011","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":12944,"journal":{"name":"Health","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-08-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141901559","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-08-08DOI: 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.
{"title":"Lesbian, gay, bisexual, transgender and queer (LGBTQ+) menopause: Literature review, knowledge gaps and research agenda.","authors":"Sue Westwood","doi":"10.1177/13634593241270923","DOIUrl":"https://doi.org/10.1177/13634593241270923","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":12944,"journal":{"name":"Health","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-08-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141901558","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-08-05DOI: 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.
{"title":"Pediatric oncology caregiving as narrative repair: Restor(y)ing disrupted family biographies and damaged moral identities.","authors":"Monica L Molinaro, Jessica Polzer, Debbie Laliberte Rudman, Marie Savundranayagam","doi":"10.1177/13634593241270955","DOIUrl":"https://doi.org/10.1177/13634593241270955","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":12944,"journal":{"name":"Health","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141889025","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-30DOI: 10.1177/13634593241258410
Christina Sadolin Damhus, Mette Bech Risør, John Brandt Brodersen, Alexandra Brandt Ryborg Jønsson
{"title":"Reply: How do we avoid polarization of interdisciplinary research on cancer diagnosis?","authors":"Christina Sadolin Damhus, Mette Bech Risør, John Brandt Brodersen, Alexandra Brandt Ryborg Jønsson","doi":"10.1177/13634593241258410","DOIUrl":"https://doi.org/10.1177/13634593241258410","url":null,"abstract":"","PeriodicalId":12944,"journal":{"name":"Health","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141855370","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-25DOI: 10.1177/13634593241258392
Rikke Sand Andersen, Michal Frumer, Camilla Hoffmann Merrild, Sara Marie Hebsgaard Offersen, Rikke Aarhus, Marie Louise Tørring
{"title":"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).","authors":"Rikke Sand Andersen, Michal Frumer, Camilla Hoffmann Merrild, Sara Marie Hebsgaard Offersen, Rikke Aarhus, Marie Louise Tørring","doi":"10.1177/13634593241258392","DOIUrl":"https://doi.org/10.1177/13634593241258392","url":null,"abstract":"","PeriodicalId":12944,"journal":{"name":"Health","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-07-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141758380","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-01Epub Date: 2023-09-19DOI: 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.
{"title":"Shaping mindful citizens: Practitioners' motivations and aspirations for mindfulness in education.","authors":"Peter J Hemming","doi":"10.1177/13634593231179024","DOIUrl":"10.1177/13634593231179024","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":12944,"journal":{"name":"Health","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11149386/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41102012","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-01Epub Date: 2023-06-05DOI: 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.
{"title":"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.","authors":"Pauline McCormack","doi":"10.1177/13634593231179026","DOIUrl":"10.1177/13634593231179026","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":12944,"journal":{"name":"Health","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11149390/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9929554","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}