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Authors:Edina Tomán, Judit Nóra Pintér, Rita Hargitai Abstract: Health, Ahead of Print. 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. Citation: Health PubDate: 2024-08-08T11:54:14Z DOI: 10.1177/13634593241271011
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Authors:Sue Westwood Abstract: Health, Ahead of Print. 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. Citation: Health PubDate: 2024-08-08T11:50:15Z DOI: 10.1177/13634593241270923
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Authors:Monica L Molinaro, Jessica Polzer, Debbie Laliberte Rudman, Marie Savundranayagam Abstract: Health, Ahead of Print. 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. Citation: Health PubDate: 2024-08-05T07:25:40Z DOI: 10.1177/13634593241270955
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Authors:Christina Sadolin Damhus, Mette Bech Risør, John Brandt Brodersen, Alexandra Brandt Ryborg Jønsson Abstract: Health, Ahead of Print.
Citation: Health PubDate: 2024-07-31T06:14:07Z DOI: 10.1177/13634593241258410
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Authors:Rikke Sand Andersen, Michal Frumer, Camilla Hoffmann Merrild, Sara Marie Hebsgaard Offersen, Rikke Aarhus, Marie Louise Tørring Abstract: Health, Ahead of Print.
Citation: Health PubDate: 2024-07-25T10:34:31Z DOI: 10.1177/13634593241258392
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Authors:Line Maria Simonsen, Natasja Eilerskov, Rikke Sand Andersen, Jens Soendergaard, Jesper Bo Nielsen, Dorte Ejg Jarbøl, Trine Thilsing, Kirubakaran Balasubramaniam, Elisabeth Assing Hvidt Abstract: Health, Ahead of Print. In this paper we present findings from a qualitative ethnographic study investigating the experiences and perceptions of general practitioners and other practice staff when introducing a new point of care diagnostic test technology (point of care polymerase chain reaction (POC PCR)) in general practice in Denmark. The ethnographic study was conducted in five general practice clinics, involving observations in four of the clinics and interviews with general practitioners and practice staff in all five clinics. Following an initial analytic phase in which barriers and facilitators in the implementation process of the Point-of-Care test were identified, we developed theoretically informed themes, drawing upon Hartmut Rosa’s social theory of technological acceleration. These themes included ambiguous experiences and perceptions of: (i) diagnostic specification and inflation embedded in diagnostic practices; (ii) empowerment and erosion of professional judgment; (iii) strategies of security and insecurity in communication; (iv) the interdependence between professional autonomy and economic structures associated with organizational power; and (v) subjective and organizational time. We discuss how diagnostic technologies simultaneously contribute to and disrupt treatment safety, efficiency, and medical decision-making. Using Rosa’s sociological concepts of alienation and resonance, this article furthermore explores how these ambiguous dynamics are experienced in general practice settings. It also examines the implications of navigating a heterogeneous socio-technical and medical landscape and what it means to be a health professional in a contemporary general practice environment that is increasingly shaped by diagnostic technologies. Citation: Health PubDate: 2024-05-31T08:15:11Z DOI: 10.1177/13634593241254988
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Authors:Thor Hennelund Nielsen, Lasse Nielsen, Søren Harnow Klausen Abstract: Health, Ahead of Print. While there is no shortage in discussions of health assessment tools, little is known about health professionals’ experience of their practical uses. However, these tools rely on assumptions that have significant impacts on the practice of health assessment. In this study, we explore health professionals’ experiences with health assessment tools, that is, how they define, use, and understand these tools, and whether they take them to measure health and wellbeing. We combine a qualitative, interview-based study of the uses and understandings of health assessment tools among Danish health professionals with a philosophical analysis of these applications and perceptions. Our study shows that contrary assumptions are involved in the use of the tools, to the extent that one can speak of a normativist-naturalist puzzle: health professionals generally apply a normativist conception of health, find health assessment useful and valuable for their clinical practice, but believe that what the tools measure is basically not health proper but some proximal entity of a more naturalist kind. This result demonstrates the complexity of health assessment tools and suggests that they are used with care to ensure both that particular tools are used for the kinds of tasks they are most apt for, and that they are put to use in awareness of their limitations. Citation: Health PubDate: 2024-05-28T06:27:01Z DOI: 10.1177/13634593241255006
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Authors:Rochelle Einboden, Lisa Dawson, Andrea McCloughen, Niels Buus Abstract: Health, Ahead of Print. Open Dialogue practitioners aim to reduce social hierarchies by not privileging any one voice in social network conversations, and thus creating space for a polyphony of voices. This sits in contrast to the traditional privileging of those voices credited with more knowledge or power because of social position or professional expertise. Using qualitative interviews, the aim of this current study was to explore Open Dialogue practitioners’ descriptions of challenges in implementing Open Dialogue at a women’s health clinic in Australia. Findings revealed how attempts to rhetorically flatten hierarchies among practitioners created challenges and a lack of clarity regarding roles and responsibilities. As the practitioners tried to adjust to new ways of working, they reverted to taking up engrained positions and power aligned with more conventional social and professional roles for leading therapy and decision-making. The findings raise questions about equity-oriented ways of working, such as Open Dialogue, where intentions of creating a flattened hierarchy may allow power structures and their effects to be minimised or ignored, rather than actively acknowledged and addressed. Further research is needed to consider the implications that shifting power relations might have on the roles and responsibilities of practitioners in the move to equity-oriented services. Citation: Health PubDate: 2024-04-27T05:53:31Z DOI: 10.1177/13634593241249101
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Authors:Dixi Louise Strand, Mari Holen Abstract: Health, Ahead of Print. Patient and Public Involvement in Research (PPIR) has become an increasingly prevalent and integral part of biomedical research. In this paper, we focus on patient-led research, taking as our case the construction of new biomedical knowledge regarding the rare disease ADNP syndrome. Specifically, we seek to understand how concepts of experiential knowledge and lay expertise become integral to rather than separate from scientific expertise. In the case of ADNP, the parent-led research “mimes” biomedical knowledge practices in a way that, on the one hand, enhances the legitimacy of science and scientific expertise, and on the other displaces and transforms science by the fact that other knowledge agents (patients, next-of-kin) enter these practices. Citation: Health PubDate: 2024-04-27T05:51:51Z DOI: 10.1177/13634593241249096
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Authors:Lauren Bridgstock, Alison Pilnick, Sarah Goldberg, Rowan H Harwood Abstract: Health, Ahead of Print. This paper examines how terms of endearment (ToE) are used as a mitigation device in interactions between staff and people living with dementia (PLWD) in the acute hospital environment. ToE are often discouraged in training for healthcare staff. However, this research demonstrates that they are still commonly used in practice. Using conversation analysis, video and audio data were examined to identify the interactional functions of ToE. Analysis showed that ToE play an important role in mitigating potentially face-threatening actions such as when patients are asked to repeat hard-to-interpret talk, or when patient agency is compromised through instruction sequences or having necessary healthcare tasks undertaken. The success of this mitigation is sensitive to the specific interactional circumstances, as well as the responsiveness of the HCP to the patient’s voiced concerns. These findings have implications for healthcare practice, training and wider care of PLWD. Citation: Health PubDate: 2024-04-05T04:26:05Z DOI: 10.1177/13634593241238856
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Authors:Gemma Hughes, Timothy J Stephens, Lucas M Seuren, Rupert M Pearse, Sara E Shaw Abstract: Health, Ahead of Print. Increasing numbers of older people undergo major surgery in the United Kingdom (UK), with many at high risk of complications due to age, co-morbidities or frailty. This article reports on a study of such patients and their clinicians engaged in shared decision-making. Shared decision-making is a collaborative approach that seeks to value and centre patients’ preferences, potentially addressing asymmetries of knowledge and power between clinicians and patients by countering medical authority with greater patient empowerment. We studied shared decision-making practices in the context of major surgery by recruiting 16 patients contemplating either colorectal, cardiac or joint replacement surgery in the UK National Health Service (NHS). Over 18 months 2019–2020, we observed and video-recorded decision-making consultations, studied the organisational and clinical context for consultations, and interviewed patients and clinicians about their experiences of making decisions. Linguistic ethnography, the study of communication and interaction in context, guided us to analyse the interplay between interactions (during consultations between clinicians, patients and family members) and clinical and organisational features of the contexts for those interactions. We found that the framing of consultations as being about life-saving or life-enhancing procedures was important in producing three different genres of consultations focused variously on: resolving problems, deliberation of options and evaluation of benefits of surgery. We conclude that medical authority persists, but can be used to create more deliberative opportunities for decision-making through amending the context for consultations in addition to adopting appropriate communication practices during surgical consultations. Citation: Health PubDate: 2024-03-22T05:13:34Z DOI: 10.1177/13634593241238857
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Authors:Andrea E Bombak, Norma Chinho, Lisa Thomson, Courtney Burk, Sumaiya Akhter, Kathleen O’Keefe, Lee Turner Abstract: Health, Ahead of Print. The lived experiences of higher-weight people vary; homogenous samples may fail to capture this diversity. This study develops an in-depth understanding of the lived experiences of higher-weight (Body Mass Index ⩾ 30) older adults (⩾60 years of age) in a Canadian Atlantic province. Participants (n = 11) were interviewed face-to-face using a semi-structured interview guide twice at 2-to-3-month intervals regarding their perceived treatment in social and health situations; how positive and negative healthcare experiences affected their health, lifestyles and healthcare seeking-behaviour; and recommendations in terms of patient experiences, access and inclusion. Participants infrequently reported negative experiences; however, participants’ experiences were informed by uptake of moralistic, neoliberal discourses. Thematic content analysis identified two major themes: active citizenship (participants demonstrated internalisation of the imperative for weight loss, healthy lifestyles and active ageing) and bright-siding (participants expressed that a positive attitude could prevent/help cope with stigma). Results suggest that individualistic, rather than collective, political solutions to health and stigma have been taken up by higher-weight older adults in a Canadian Atlantic province, which may hinder attempts at structural reforms addressing stigma. Citation: Health PubDate: 2024-03-19T09:19:50Z DOI: 10.1177/13634593241238869
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Authors:Alvaro Martinez-Lacabe Abstract: Health, Ahead of Print. Framed across three distinct periods of the history of neoliberalism and the HIV epidemic in England, this article conducts a detailed examination of the concept of personal responsibility and its contested uses within HIV prevention. The article questions the theoretical potential of neoliberal subjectivities to comprehend behaviours related to the pharmaceuticalised governance (or lack thereof) of gay men’s sexual health, exploring the gap between theories emphasising individual responsibility and the practical experiences of gay men. The analysis draws on testimonials from gay men in oral history interviews and archival sources. The article illustrates how the pervasive notion of personal responsibility in England has been co-opted by neoliberal ideologies, leading to the stigmatisation of gay men whose sexual behaviours diverge from public health mandates. The widespread stigmatisation resulting from this ideology underscores a significant limitation in the theoretical framework of neoliberal subjectivities. This constraint extends beyond merely failing to grasp the complexity of sexual behaviours; it also reflects a lack of understanding of any other behaviour related to public health. Therefore, the article concludes by advocating the necessity of employing and constructing alternative theoretical frameworks to comprehend the pharmaceutical governance or lack thereof of gay men’s sexual health. Through a concise autoethnography of the authors’ pharmaceutical sexual health governance, the article introduces the concept of biocommesuration as an illustrative analysis that transcends the limitations of neoliberal subjectivities. Citation: Health PubDate: 2024-03-18T12:34:05Z DOI: 10.1177/13634593241238862
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Authors:Marjo Kolehmainen Abstract: Health, Ahead of Print. This article analyses the digital screen as a health technology. In particular, the article asks how screens as a part of therapy settings or counselling practices materialise – or fail to materialise – care. The empirical data comprise interviews with therapy and counselling professionals, whose experiences with technology during the COVID-19 pandemic were my original interest. Adopting a sociomaterial approach to technology use, it scrutinises not only how screens are used, but also how screens themselves act and operate. This approach foregrounds the screen as ‘multiple’, complicating a dichotomous understanding between in-person therapy and remote therapy. The article argues that the screen operates in a variety of ways that might either facilitate or degrade care and is an essential part of more-than-human care in digitalised societies. Acknowledging the agential capacities of all matter, the article also conceptualises screens as ‘vibrant matter’. Citation: Health PubDate: 2024-02-26T11:37:50Z DOI: 10.1177/13634593241234491
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Authors:Christina Sadolin Damhus, Mette Bech Risør, John Brandt Brodersen, Alexandra Brandt Ryborg Jønsson Abstract: Health, Ahead of Print. To reduce morbidity and mortality of cancer, more countries have implemented strategies to detect cancer, based on the logic of ‘the sooner the better’. Time is thereby an essential component in how cancer research, policies, and prevention are practiced today. Where the logic of early diagnosis benefits some, the logic also produces harms. In this article, we use a cross-disciplinary case-study design to discuss how different notions of time and linearity are essential in today’s research ontology of cancer, describe the individual and societal consequences of such ontology, and invite a rethinking of time in cancer. Drawing on theoretical concepts of time together with cancer epidemiological, historical and ethnographical data, we analyse how the logic of early diagnosis has been established as a stable concept. Although evidence supporting the logic points in different directions, the message ‘the sooner the better’ is currently not being challenged by research, policy or society. This at least partly, can be explained by a linear perception of time and societal traces of neoliberalism and acceleration in our society together with cancer still being a somewhat enigmatic disease that requires acute action. To support a sustainable healthcare sector, we argue there is a need to nuance the logic of early diagnosis. Continuing the linear perception of symptoms and cancer, risks doing more harm than good by making more people patients unnecessarily and by spending health resources on those with the least need. Citation: Health PubDate: 2024-02-26T11:36:20Z DOI: 10.1177/13634593241234481
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Authors:Eleonora Rossero, Raffaella Ferrero Camoletto Abstract: Health, Ahead of Print. Psychiatric practice has always entailed a coercive dimension, visible not only in its formal expressions (e.g. compulsory treatment) but in many informal and implicit forms. In fact, contemporary psychiatric practices are characterized by an interplay of coercion and dialog to be interpreted not as binary categories but as extremes of a spectrum. Within this perspective, it becomes crucial to draw boundaries attributing meaning to professional identities and practices in psychiatric work. This is particularly relevant in acute wards: to explore this issue, we selected two cases according to a most-different-cases design, one ward with a mechanical-restraint approach compared to one with no-mechanical-restraint. We argue that gender, mobilized to performatively draw distinctions and hierarchies in order to define and justify different approaches to psychiatric crises along the continuum between coercion and dialog, is a key dimension in the boundary-making process. The analysis identifies two main dimensions of drawing gendered boundaries: inter-gender boundaries (overlapping the binary distinction between masculinity and femininity with a more coercive or relational-dialogic approach to crisis) and intra-gender boundaries (distinguishing and ranking of different masculinities and femininities), associating a less coercive orientation with a devirilized masculinity. Citation: Health PubDate: 2024-02-26T11:34:21Z DOI: 10.1177/13634593241234479
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Authors:Kristen Foley, Stacie Attrill, Chris Brebner Abstract: Health, Ahead of Print. Service-based caring sectors like disability are increasingly being operated via market logic, including shifts towards personalised funding. These shifts must be brought to life in/through people already located in relation to ideas and values that underpin historical policies. Our manuscript examines how identities are re/shaped in relation to marketised policy change and explores how identity change unfolds (or not) during periods of transition: situated within the transition to the National Disability Insurance Scheme executed in Australia as a major disability funding reform. Our qualitative dataset involves interview and focus group data collected with service recipients/carers (n = 28), providers/managers (n = 17) and advocates (n = 2) during shift from government- to personally-controlled funding of allied health services for people with disability in Australia (2017–2020). We used layered sociological inference to develop and interrogate processes of tension and identity change amidst lived experience(s) of policy change. Our analysis elucidates how various identities were encouraged, desired, resisted and constrained in relation to the policy transition. We bring together sub-themes from analysis of recipient/carer data (getting value-for-money; critiquing service quality; and experiencing system shortfalls) and manager/provider data (learning to transact; the call to care; and structural frictions in/and identity transitions) to interpret that recipients/carers are Feeling (like) the dollar sign and that managers/providers are Troubling profits. In both cases ‘hearts’ and ‘minds’ are perceived to be diametrically opposed and symbolic in/against processes of marketisation. We synthesise our data into an illustrative framework that facilitates understanding of how this perception of opposed ‘hearts’ and ‘minds’ seems to constrain the identity transitions encouraged by personalised funding, and explore ways in which desired identities might be supported amidst marketising policy transition. Citation: Health PubDate: 2024-02-14T06:41:39Z DOI: 10.1177/13634593241230018
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Authors:Elizabeth McKibben Abstract: Health, Ahead of Print. Yoga has become a popular health and wellbeing practice that draws on ancient philosophy. Pratyahara is a core tenet of yoga practice and is often translated to mean withdrawal of the senses. Withdrawing from the senses plays a key role in aiding yoga practitioners to find spiritual enlightenment by transcending the worldly. Withdrawing from the material world, however, does not neatly fit within the parameters of the contemporary postural yoga industry. This paper looks at the conceptual origins of pratyahara through stances relevant to health research. The author weaves biomedical, esthetic, and neoliberal onto-epistemological stances through health discourse to discuss how postural yoga both resists and replicates power imbalances. In so doing the author emphasizes the paradoxical nature of pratyahara as it is reflected in socio-political tensions of the yoga industry. To conclude, the author suggests that pratyahara itself can be useful in resolving this tension as yoga fulfills a philosophical prerogative for social change. Citation: Health PubDate: 2024-02-05T07:15:11Z DOI: 10.1177/13634593231222450
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Authors:Elizabeth J Straus, Helen Brown, A. Fuchsia Howard, Gail Teachman Abstract: Health, Ahead of Print. This paper explores temporalities and experiences of time drawn from an analysis of interview data from a critical narrative inquiry of the experiences of young adults living with home mechanical ventilation (HMV). The analysis centers the ideological effects of dominant discourses that shape understandings of time in the Euro-Western world and the ways in which young adults’ stories prompt a rethinking of time in health research and praxis. Data generation involved interviews and photo-elicitation with five young adults (ages 18–40). A critical narrative analysis of participants’ stories surfaced the influence of ableist, developmentalist, and neoliberal discourses of time and the creative resistance that points to the potential of crip orientations to time in opening up possibilities for living. Implications for practice and research are offered. Citation: Health PubDate: 2024-01-18T07:12:34Z DOI: 10.1177/13634593241226646
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