Pub Date : 2024-09-18DOI: 10.1177/13634593241281602
Kristina A Smith, Kelly P Arbour-Nicitopoulos, Kimberley Widger
Waiting for a child transplant is a form of suffering for parents, yet little research has explored how parents experience waiting and how healthcare providers can impact their waiting experiences. The purpose of this article is to investigate how parents experienced the process of waiting for their child's transplant with a specific focus on the impact of healthcare providers on parents' experience of waiting. Six parents from four different families participated in interviews and observations. Our narrative analysis suggested that parents had no narrative roadmap to navigate waiting and the importance of healthcare providers' tailoring the amount and type of medical information to a parents' needs. We discuss how waiting required parents to be hypervigilant and provide continuity of care for their child, and how this "managerial role" could lead to a loss of trust with their healthcare providers. Parents' accounts were replete with contradictions, and as an extension of this, waiting was full of contradictions. Findings contribute to conceptual, methodological, and practical work exploring how parents live in deep uncertainty about the future, and how healthcare providers can support parents in their child's transplantation and other life-threatening illness contexts.
{"title":"Parents' experiences of waiting for their child's transplant: A focus on how healthcare providers can impact the waiting process.","authors":"Kristina A Smith, Kelly P Arbour-Nicitopoulos, Kimberley Widger","doi":"10.1177/13634593241281602","DOIUrl":"https://doi.org/10.1177/13634593241281602","url":null,"abstract":"<p><p>Waiting for a child transplant is a form of suffering for parents, yet little research has explored how parents experience waiting and how healthcare providers can impact their waiting experiences. The purpose of this article is to investigate how parents experienced the process of waiting for their child's transplant with a specific focus on the impact of healthcare providers on parents' experience of waiting. Six parents from four different families participated in interviews and observations. Our narrative analysis suggested that parents had no narrative roadmap to navigate waiting and the importance of healthcare providers' tailoring the amount and type of medical information to a parents' needs. We discuss how waiting required parents to be hypervigilant and provide continuity of care for their child, and how this \"managerial role\" could lead to a loss of trust with their healthcare providers. Parents' accounts were replete with contradictions, and as an extension of this, waiting was full of contradictions. Findings contribute to conceptual, methodological, and practical work exploring how parents live in deep uncertainty about the future, and how healthcare providers can support parents in their child's transplantation and other life-threatening illness contexts.</p>","PeriodicalId":12944,"journal":{"name":"Health","volume":" ","pages":"13634593241281602"},"PeriodicalIF":1.9,"publicationDate":"2024-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142285876","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 : 2024-09-16DOI: 10.1177/13634593241270950
Petra Roll Bennet
Breast augmentation is a prevalent cosmetic surgery procedure among women in Western societies, and the cosmetic surgery market has witnessed substantial growth. Today, websites and online forums are platforms that feature discussions about cosmetic procedures. A genre on surgery clinic websites is 'patient stories', but also lay-initiated internet forums facilitate discussions and shared experiences related to cosmetic surgery. This study aims to analyse lay-initiated online narratives about cosmetic breast augmentation. The shared narratives contain descriptions of how women who are about to undergo breast augmentation prepare for surgery, the medical procedures that take place on the day of surgery itself, and the experiences and feelings after waking up after anaesthesia. Employing a structural analysis of 30 of these stories, this research illuminates how the surgery stories adhere to a conventional storytelling format, and how key characters within the stories are 'helpers and makers', including relatives, nurses and surgeons. The focus in these narratives revolves around the woman herself, although her active involvement is primarily observed during the preparation phase, with a more passive role assumed during subsequent clinic routines. Despite instances of pain and discomfort in the narratives, the stories are enveloped in an aura of glamour and a spa-like atmosphere. It is discussed how this 'fairy tale' story, narrating a surgical metamorphosis, seems to align with the popularisation of the cosmetic surgery sector.
{"title":"Sedated beauty: The invisible knife in online narratives about cosmetic breast augmentation.","authors":"Petra Roll Bennet","doi":"10.1177/13634593241270950","DOIUrl":"https://doi.org/10.1177/13634593241270950","url":null,"abstract":"<p><p>Breast augmentation is a prevalent cosmetic surgery procedure among women in Western societies, and the cosmetic surgery market has witnessed substantial growth. Today, websites and online forums are platforms that feature discussions about cosmetic procedures. A genre on surgery clinic websites is 'patient stories', but also lay-initiated internet forums facilitate discussions and shared experiences related to cosmetic surgery. This study aims to analyse lay-initiated online narratives about cosmetic breast augmentation. The shared narratives contain descriptions of how women who are about to undergo breast augmentation prepare for surgery, the medical procedures that take place on the day of surgery itself, and the experiences and feelings after waking up after anaesthesia. Employing a structural analysis of 30 of these stories, this research illuminates how the surgery stories adhere to a conventional storytelling format, and how key characters within the stories are 'helpers and makers', including relatives, nurses and surgeons. The focus in these narratives revolves around the woman herself, although her active involvement is primarily observed during the preparation phase, with a more passive role assumed during subsequent clinic routines. Despite instances of pain and discomfort in the narratives, the stories are enveloped in an aura of glamour and a spa-like atmosphere. It is discussed how this 'fairy tale' story, narrating a surgical metamorphosis, seems to align with the popularisation of the cosmetic surgery sector.</p>","PeriodicalId":12944,"journal":{"name":"Health","volume":" ","pages":"13634593241270950"},"PeriodicalIF":1.9,"publicationDate":"2024-09-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142285877","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 : 2024-09-01Epub Date: 2023-07-30DOI: 10.1177/13634593231188489
Olaug S Lian, Sarah Nettleton, Huw Grange, Christopher Dowrick
In this paper, we explore the ways in which patients invoke third parties to gain decision-making influence in clinical consultations. The patients' role in decision-making processes is often overlooked, and this interactional practice has rarely been systematically studied. Through a contextual narrative exploration of 42 naturally occurring consultations between patients (aged 22-84) and general practitioners (GPs) in England, we seek to fill this gap. By exploring how and why patients invoke third parties during discussions about medical treatments, who they refer to, what kind of knowledge their referents possess, and how GPs respond, our main aim is to capture the functions and implications of this interactional practice in relation to decision-making processes. Patients refer to third parties during decision-making processes in most of the consultations, usually to argue for and against certain treatment options, and the GPs recognise these utterances as pro-and-contra arguments. This enables patients to counter the GPs' professional knowledge through various knowledge-sources and encourage the GPs to target their specific concerns. By attributing arguments to third parties, patients claim decision-making influence without threatening the GPs' authority and expertise, which their disadvantaged epistemic position demands. Thereby, patients become able to negotiate their role and their epistemic position, to influence the agenda-setting, and to take part in the decision-making process, without being directly confrontational. Invoking third parties is a non-confrontational way of proposing and opposing treatment options that might facilitate successful patient participation in decision-making processes, and so limit the risk of patients being wronged in their capacity as knowers.
{"title":"'My cousin said to me . . .' Patients' use of third-party references to facilitate shared decision-making during naturally occurring primary care consultations.","authors":"Olaug S Lian, Sarah Nettleton, Huw Grange, Christopher Dowrick","doi":"10.1177/13634593231188489","DOIUrl":"10.1177/13634593231188489","url":null,"abstract":"<p><p>In this paper, we explore the ways in which patients invoke third parties to gain decision-making influence in clinical consultations. The patients' role in decision-making processes is often overlooked, and this interactional practice has rarely been systematically studied. Through a contextual narrative exploration of 42 naturally occurring consultations between patients (aged 22-84) and general practitioners (GPs) in England, we seek to fill this gap. By exploring how and why patients invoke third parties during discussions about medical treatments, who they refer to, what kind of knowledge their referents possess, and how GPs respond, our main aim is to capture the functions and implications of this interactional practice in relation to decision-making processes. Patients refer to third parties during decision-making processes in most of the consultations, usually to argue for and against certain treatment options, and the GPs recognise these utterances as pro-and-contra arguments. This enables patients to counter the GPs' professional knowledge through various knowledge-sources and encourage the GPs to target their specific concerns. By attributing arguments to third parties, patients claim decision-making influence without threatening the GPs' authority and expertise, which their disadvantaged epistemic position demands. Thereby, patients become able to negotiate their role and their epistemic position, to influence the agenda-setting, and to take part in the decision-making process, without being directly confrontational. Invoking third parties is a non-confrontational way of proposing and opposing treatment options that might facilitate successful patient participation in decision-making processes, and so limit the risk of patients being wronged in their capacity as knowers.</p>","PeriodicalId":12944,"journal":{"name":"Health","volume":" ","pages":"775-794"},"PeriodicalIF":1.9,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11323419/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9897566","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: 2023-09-14DOI: 10.1177/13634593231200126
Victoria Cluley, Helen Eborall, Katherine Hull, Niamh Quann, James O Burton
Haemodialysis is a common treatment option offered internationally for people requiring kidney replacement therapy. Research exploring haemodialysis is predominantly clinical and quantitative, and improvements to its provision and receipt tends also to be clinically focused. In recent years, however, a number of studies have sought to explore the lived experience of haemodialysis. These studies tend to use semi-structured interviews and present descriptive findings. Such findings serve to raise the profile of patient perspectives and encourage thinking beyond the clinical gaze. To progress this, we apply a post-humanism approach to the understanding of the receipt of haemodialysis. Drawing on findings from a study to explore the experience and impact of in-centre, daytime, haemodialysis we follow Fox and Alldred's ethological toolkit to provide a post-human analysis of haemodialysis. In doing so we argue that haemodialysis exists as a heterogenous and changeable assemblage of multiple and fluid, human and non-human factors that has the capacity to affect. Here we outline this post-human approach and the impact it has for understanding not just haemodialysis but also the receipt of treatment for other chronic illnesses.
{"title":"Progressing the understanding of chronic illness and its treatment: A post-human, ethological understanding of haemodialysis.","authors":"Victoria Cluley, Helen Eborall, Katherine Hull, Niamh Quann, James O Burton","doi":"10.1177/13634593231200126","DOIUrl":"10.1177/13634593231200126","url":null,"abstract":"<p><p>Haemodialysis is a common treatment option offered internationally for people requiring kidney replacement therapy. Research exploring haemodialysis is predominantly clinical and quantitative, and improvements to its provision and receipt tends also to be clinically focused. In recent years, however, a number of studies have sought to explore the lived experience of haemodialysis. These studies tend to use semi-structured interviews and present descriptive findings. Such findings serve to raise the profile of patient perspectives and encourage thinking beyond the clinical gaze. To progress this, we apply a post-humanism approach to the understanding of the receipt of haemodialysis. Drawing on findings from a study to explore the experience and impact of in-centre, daytime, haemodialysis we follow Fox and Alldred's ethological toolkit to provide a post-human analysis of haemodialysis. In doing so we argue that haemodialysis exists as a heterogenous and changeable assemblage of multiple and fluid, human and non-human factors that has the capacity to affect. Here we outline this post-human approach and the impact it has for understanding not just haemodialysis but also the receipt of treatment for other chronic illnesses.</p>","PeriodicalId":12944,"journal":{"name":"Health","volume":" ","pages":"716-735"},"PeriodicalIF":1.9,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11323412/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10233901","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: 2023-08-30DOI: 10.1177/13634593231195784
Philip Haynes, Angie Hart, Suna Eryigit-Madzwamuse, Matthew Wood, Josie Maitland, Josh Cameron
The use of resilience in social practice has evolved from a theoretical framework at the intersection between individuals and their social ecology. Critics argue this theory still results in policies and practices that are too individualised, with the potential for negative social consequences. This paper further critiques contemporary understanding of resilience theory and its application. It juxtaposes complex systems theory with a social inequalities oriented resilience practice. This provides a paradoxical approach. It is acknowledged that state and public policy decisions and actions can be anti-resilient, undermining community and social resilience that already exists in the form of social relationships, self-organisation and co-production. Nevertheless, collective social resilience also illustrates the potential of local and service user organisations to contribute to an overall transformational change process.
{"title":"The contribution of a complex systems-based approach to progressive social resilience.","authors":"Philip Haynes, Angie Hart, Suna Eryigit-Madzwamuse, Matthew Wood, Josie Maitland, Josh Cameron","doi":"10.1177/13634593231195784","DOIUrl":"10.1177/13634593231195784","url":null,"abstract":"<p><p>The use of resilience in social practice has evolved from a theoretical framework at the intersection between individuals and their social ecology. Critics argue this theory still results in policies and practices that are too individualised, with the potential for negative social consequences. This paper further critiques contemporary understanding of resilience theory and its application. It juxtaposes complex systems theory with a social inequalities oriented resilience practice. This provides a paradoxical approach. It is acknowledged that state and public policy decisions and actions can be anti-resilient, undermining community and social resilience that already exists in the form of social relationships, self-organisation and co-production. Nevertheless, collective social resilience also illustrates the potential of local and service user organisations to contribute to an overall transformational change process.</p>","PeriodicalId":12944,"journal":{"name":"Health","volume":" ","pages":"754-774"},"PeriodicalIF":1.9,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11323425/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10177475","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: 2023-09-25DOI: 10.1177/13634593231200129
Kristen Foley, Toby Freeman, Lisa Wood, Joanne Flavel, Yvonne Parry, Fran Baum
Logic modelling is used widely in health promotion planning for complex health and social problems. It is often undertaken collaboratively with stakeholders across sectors that hold and enact different institutional approaches. We use hermeneutic philosophy to explore how knowledge is 'lived' by - and unfolds differently for - cross-sectoral stakeholders during comprehensive primary healthcare service planning. An Organisational Action Research partnership was established with a non-government organisation designing comprehensive primary health care for individuals experiencing homelessness in Adelaide, Australia. Grey literature, stakeholder input, academic feedback, a targeted literature review and evidence synthesis were integrated in iterative cycles to inform and refine the logic model. Diverse knowledge systems are active when cross-sectoral stakeholders collaborate on logic models for comprehensive primary health care planning. Considering logic modelling as a hermeneutic praxis helps to foreground and explore these differences. In our case, divergent ideas emerged in how health/wellbeing and trust were conceptualised; language had different meanings across sectors; and the outcomes and data sought were nuanced for various collaborators. We explicate these methodological insights and also contribute our evidence-informed, collaboratively-derived model for design of a comprehensive primary health care service with populations experiencing homelessness. We outline the value of considering cross-sectoral logic modelling as hermeneutic praxis. Engaging with points of difference in cross-sectoral knowledge systems can strengthen logic modelling processes, partnerships and potential outcomes for complex and comprehensive primary health care services.
{"title":"Logic modelling as hermeneutic praxis: Bringing knowledge systems into view during comprehensive primary health care planning for homelessness in Australia.","authors":"Kristen Foley, Toby Freeman, Lisa Wood, Joanne Flavel, Yvonne Parry, Fran Baum","doi":"10.1177/13634593231200129","DOIUrl":"10.1177/13634593231200129","url":null,"abstract":"<p><p>Logic modelling is used widely in health promotion planning for complex health and social problems. It is often undertaken collaboratively with stakeholders across sectors that hold and enact different institutional approaches. We use hermeneutic philosophy to explore how knowledge is 'lived' by - and unfolds differently for - cross-sectoral stakeholders during comprehensive primary healthcare service planning. An Organisational Action Research partnership was established with a non-government organisation designing comprehensive primary health care for individuals experiencing homelessness in Adelaide, Australia. Grey literature, stakeholder input, academic feedback, a targeted literature review and evidence synthesis were integrated in iterative cycles to inform and refine the logic model. Diverse knowledge systems are active when cross-sectoral stakeholders collaborate on logic models for comprehensive primary health care planning. Considering logic modelling as a hermeneutic praxis helps to foreground and explore these differences. In our case, divergent ideas emerged in how health/wellbeing and trust were conceptualised; language had different meanings across sectors; and the outcomes and data sought were nuanced for various collaborators. We explicate these methodological insights and also contribute our evidence-informed, collaboratively-derived model for design of a comprehensive primary health care service with populations experiencing homelessness. We outline the value of considering cross-sectoral logic modelling as hermeneutic praxis. Engaging with points of difference in cross-sectoral knowledge systems can strengthen logic modelling processes, partnerships and potential outcomes for complex and comprehensive primary health care services.</p>","PeriodicalId":12944,"journal":{"name":"Health","volume":" ","pages":"673-697"},"PeriodicalIF":1.9,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41128898","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 : 2024-09-01Epub Date: 2023-09-29DOI: 10.1177/13634593231200128
Anna Mann
Quality of life has become a central value in the provision of healthcare for patients with chronic conditions. This has engendered debates in critical medical sociology on the non-neutral effects that valuing health and illness, medical interventions, and health care delivery in terms of quality of life yields. Focusing on the case of nephrology, this paper presents qualitative data collected in Austria of two dialysis units in which nephrologists initiated projects aimed towards 'the improvement of patients' quality of life'. Whereas the first involved nurses supporting patients in the administration of peritoneal dialysis at home, the second implied the provision of treatment and care exclusively focused on a well-being 'in the here and now' to patients. By conceptualising physicians as actors within networks of relations and values enacted in practices, it analyses how in both dialysis units reference to quality of life enabled nephrologists to problematise the provision of standard haemodialysis treatment to multi-morbid, elderly patients, to develop a new treatment protocol, and to interest and enrol others in the provision of healthcare according this new protocol. Valuing medical interventions in terms of quality of life not only leads to a governmentalization of living and an economisation of health. It also allows physicians to articulate a socio-medico-ethical problem - the availability of life-prolonging technologies for a growing population of elderly, multi-morbid patients - and develop solutions locally. What the solutions consist in may fundamentally differ, however.
{"title":"'To improve quality of life': Diverging enactments of a value in nephrology clinical practices.","authors":"Anna Mann","doi":"10.1177/13634593231200128","DOIUrl":"10.1177/13634593231200128","url":null,"abstract":"<p><p>Quality of life has become a central value in the provision of healthcare for patients with chronic conditions. This has engendered debates in critical medical sociology on the non-neutral effects that valuing health and illness, medical interventions, and health care delivery in terms of quality of life yields. Focusing on the case of nephrology, this paper presents qualitative data collected in Austria of two dialysis units in which nephrologists initiated projects aimed towards 'the improvement of patients' quality of life'. Whereas the first involved nurses supporting patients in the administration of peritoneal dialysis at home, the second implied the provision of treatment and care exclusively focused on a well-being 'in the here and now' to patients. By conceptualising physicians as actors within networks of relations and values enacted in practices, it analyses how in both dialysis units reference to quality of life enabled nephrologists to problematise the provision of standard haemodialysis treatment to multi-morbid, elderly patients, to develop a new treatment protocol, and to interest and enrol others in the provision of healthcare according this new protocol. Valuing medical interventions in terms of quality of life not only leads to a governmentalization of living and an economisation of health. It also allows physicians to articulate a socio-medico-ethical problem - the availability of life-prolonging technologies for a growing population of elderly, multi-morbid patients - and develop solutions locally. What the solutions consist in may fundamentally differ, however.</p>","PeriodicalId":12944,"journal":{"name":"Health","volume":" ","pages":"698-715"},"PeriodicalIF":1.9,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41115937","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 : 2024-09-01Epub 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":" ","pages":"653-672"},"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 : 2024-09-01Epub 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":" ","pages":"736-753"},"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 : 2024-08-11DOI: 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。
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