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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.

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.

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.

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.

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.

The promotion of health literacy was a key public health strategy during the COVID-19 pandemic. However, the role of social networks and relationships for support with health literacy-related tasks in the context of the COVID-19 pandemic is scarcely understood. Moving beyond traditional notions of health literacy, which focus on individual skills and knowledge, this study uses the concept of distributed health literacy to explore how individuals make meaning of and respond to health literacy and make their literacy skills available to others through their relational and socially situated and lived experiences of the COVID-19 pandemic. Drawing on 89 semi-structured interviews conducted in three European countries (Italy, Portugal, and Switzerland) between October and December 2021, we found narratives of stabilization, hybridization, and disruption that show how health literacy concerning COVID-19 is a complex social construct intertwined with emotional, cognitive, and behavioral responses distributed among individuals, communities, and institutions within socioeconomic and political contexts that affect their existence. This paper opens new empirical directions to understand the critical engagement of individuals and communities toward health information aimed at making sense of a complex and prolonged situation of uncertainty in a pandemic.

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.

There is growing awareness about issues of sexual consent, especially in autonomy-compromising or "non-ideal" contexts, including sex involving alcohol. Understanding the conditions needed for consensual sex to occur in this emergent milieu is critically important, especially for young men (ages 18-30 years) who normatively combine drinking alcohol with sex and are most often perpetrators of sexual violence. This study offers a discourse analysis of young men's alcohol use and sexual consent. Data are drawn from qualitative interviews with 76 young men (including gay, bisexual, queer, and straight men) in Vancouver, Canada, from 2018 to 2021. Informed by Kukla's non-ideal theory of sexual consent and critical and inclusive masculinities, this analysis identified three discursive frames: careful connections, watering it down, and blurred lines. In careful connections young men discussed their efforts to actively promote sexual and decisional autonomy for themselves and their sexual partners when drinking. Yet, in watering it down young men invoked discourses of disinhibition, deflection, and denial to normalize alcohol use as being somewhat excusatory for sexual violence, downplaying the role and responsibility of men. Lastly, men operationalized blurred lines through a continuum of consent and of "meeting (masculine) expectations" when discussing sexual violence and victimization while intoxicated. Together, these discursive frames provide insights into the gendered nature of sexual violence and the extent to which idealized notions of sexual consent play out in the everyday lives of young men who use alcohol with sex. Findings hold philosophical and pragmatic implications for contemporary efforts to scaffold sexual consent.