Medical Humanities最新文献

{"title":"Imagining alternative futures with augmentative and alternative communication: a manifesto.","authors":"Darryl Sellwood, Lateef McLeod, Kevin Williams, Katie Brown, Graham Pullin","doi":"10.1136/medhum-2024-013022","DOIUrl":"https://doi.org/10.1136/medhum-2024-013022","url":null,"abstract":"<p><p>This manifesto seeks to challenge dominant narratives about the future of augmentative and alternative communication (AAC). Current predictions are mainly driven by technological developments-technologies usually being developed for different markets-and are often based on ableist assumptions. In online conversations and a discussion panel at the 2023 International Society for Augmentative and Alternative Communication conference, we explored alternative futures by adopting different starting positions. Our case is presented under five headings: questioning the dominance of predictions that artificial intelligence and brain-computer interfaces will define the future of AAC; resisting disability being framed medically, as a problem to be solved, yet acknowledging both the pleasures and pains of being disabled; declaring that people who use AAC-as cyborgs of necessity rather than choice-should have choice and ownership of our technologies; challenging notions of independence as the necessary end goal for disabled bodies and considering interdependence as a human right; imagining alternative futures in which all people who use AAC are accepted and embraced for our communication and self-expression. This manifesto is an invitation for further discussion, and we welcome responses. While our focus is AAC, and three of the authors use AAC, we believe that our stance could be relevant to other disability communities in turn. This paper is about who gets to imagine disability futures and whose voices are left out. It is about how uncritical these futures can be, often presuming values that disabled people, in all their diversity, may not share.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-10-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142559116","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Why robot embodiment matters: questions of disability, race and intersectionality in the design of social robots.","authors":"Mark Paterson","doi":"10.1136/medhum-2024-013028","DOIUrl":"https://doi.org/10.1136/medhum-2024-013028","url":null,"abstract":"<p><p>A growing minority of those with disabilities are people of color (POC), with, for example, autism diagnosis rates now higher for children of color than for white children in the USA. This trend underscores the need for assistive technologies, especially socially assistive robots, to be designed with intersectional users in mind. Outside of Japan, most robots are designed with white synthetic skin and able-bodied features, failing to reflect the diverse users they are meant to assist. This paper explores the concept of the \"engineering imaginary,\" the historical and cultural influences that shape these designs, and which tend to limit robot embodiment to white, able-bodied forms. Drawing on work from scholars like Lucy Suchman, Jennifer Rhee, Neda Atanasoski and Kalindi Vora, the paper critiques this engineering bias. A key historical moment in the production of the engineered imaginary of artificial humans is provided by Ovid's myth of Pygmalion and its influence on representations across literature, film, and then robotics. Furthermore, the physicality of the robot, and its role in the production of nonverbal communication (NVC) for more inclusive interaction with humans is explored, seeing these as steps toward what some roboticists are calling Artificial Empathy (AE). Through case studies like Bestic, Bina48, and HuggieBot 3.0, the paper explores what I call <i>the poverty of the engineering imaginary</i>, how current robotics design fails to properly address issues of race, gender, and disability. Ultimately, the paper argues for more inclusive robot designs that accommodate diverse bodies and social dynamics, questioning the pervasive norm of white, able-bodied robotic embodiment.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-10-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142523349","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Correspondence on \"Dating apps as health allies? Examining the opportunities and challenges of dating apps as partners in public health\" by Garcia-Iglesias <i>et al</i>.","authors":"Dan Wohlfeiler, Jen Hecht","doi":"10.1136/medhum-2024-013106","DOIUrl":"https://doi.org/10.1136/medhum-2024-013106","url":null,"abstract":"<p><p>For public health, any partnership with the private sector raises ethical issues. While programmes to prevent HIV and STI (sexually transmitted infections) have focused on understanding the priorities and cultural mores of diverse communities, they need to develop a similar understanding of how private businesses work. In this commentary, we identify our successes, and challenges, in building ongoing collaborations with dating apps in order to reduce HIV/STI transmission among their users. We have conducted multiple surveys to determine which strategies are most likely to be accepted by both dating app owners and users, and which of those strategies public health experts believe will have the greatest benefit. This research has helped us prioritise strategies to bring to app owners. We have made significant progress in seeing apps and users adopt many of these strategies, particularly in developing optional personal profile fields which allow users to exchange information and make informed choices about their sexual health strategies. Our efforts have also helped apps implement tools to reduce stigmatisation among their users.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-10-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142510173","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Exploring the GP-patient relationship: a historical narration.","authors":"Emma Ladds","doi":"10.1136/medhum-2024-012916","DOIUrl":"https://doi.org/10.1136/medhum-2024-012916","url":null,"abstract":"<p><p>The relationship between patients and their doctor is a fundamental concept-particularly within general practice. Many patients and general practitioners (GPs) have a 'common-sense' recognition of the interpersonal connection, usually over time, that makes a relationship meaningful. GPs have consistently striven to emphasise the importance of this connection. While much research has explored the components and influences affecting intersubjective connections, less attention has focused on how the historical, professional, sociopolitical and philosophical contexts have influenced their experience and portrayal. However, recent claims of a crisis in UK general practice resulting from declining relational encounters suggest these are important considerations. In this paper, episodic narration (chronicling) is used to explore five different ages of UK general practice: the emergent period (1815-1948); the expansion of coverage (1949-1965); the professionalisation of general practice (1966-1988); the age of marketisation and neoliberalisation (1989-2004); and the age of technology and fragmentation (2004-present day). A range of sources illustrate micro and macro viewpoints within each period-personal reflections, professional publications, political directives or policies, and representations from the fields of art and literature. This allows for a deeper exploration of contextual influences on the codification and enactment of GP-patient relationships over time and their interpretation and perception. Significant epidemiological and biomedical realities and their respective social interpretation(s), the socioprofessional nature of the GP, that is, their role, societal position and framework of practice, and broader sociopolitical and philosophical factors are explored. Ideological frameworks (from socialism to free market policies and neoliberalism) were particularly important. These determine approaches to funding, service/provider structures, and regulation and governance, which incentivise, enable, or inhibit choices and behaviours among individuals and society, thus impacting the enactment of the GP-patient relationship. If meaningful GP-patient connections are valuable and desirable-as GPs consistently claim they are-we require an honest discussion about the contexts necessary to enable and retain them.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-10-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142510174","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Stories of chronic illness: exploring qualitative data through poetic transcriptions.","authors":"Margaret Simmons, Gabriela Carolus, Mahima Kalla","doi":"10.1136/medhum-2024-012918","DOIUrl":"https://doi.org/10.1136/medhum-2024-012918","url":null,"abstract":"<p><p>As a research technique, poetic transcription transforms people's stories and enables deeper analysis and engagement between participants, readers and researchers. Chronic illness is often characterised as a 'biographical disruption', which may threaten a patient's self-identity and equanimity. Such disruptions often influence patients' perceptions of imminent life changes, social relationships and cognitive and material resources. Thus, poetic transcription offers a valuable tool for making sense of complex illnesses and lived experiences. This paper demonstrates how raw interview data can be reconstructed into a poetic format to highlight the nuances of people's lived illness experiences, which may remain elusive to them and others. A qualitative survey was conducted with a small group of patient participants, eliciting chronic illness narratives analysed through poetic transcription. Poetic transcription becomes a rigorous and legitimate qualitative research method through multiple iterations and extensive data engagement. Our main themes are focused on biographical disruption, temporality, humour, voice and ableism.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-10-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142477408","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Health sciences training for disability inclusion: the need to engage with emotion.","authors":"Brian Watermeyer","doi":"10.1136/medhum-2024-013044","DOIUrl":"https://doi.org/10.1136/medhum-2024-013044","url":null,"abstract":"<p><p>Material aspects of disability inequality, such as access to quality services, housing and employment, are an urgent, worldwide concern. Less recognised though, are psychological layers of prejudice and discrimination, which play a significant role in cementing marginality. Against this backdrop, health practitioners can fill influential roles in shaping the self-identity and citizenship entitlement of people with disabilities. Yet, these professionals are, like the balance of society, socialised in environments where ableism is intrinsic, invisible and unquestioned. Disability prejudice has both an emotional and unconscious basis, and overcoming its effects is argued to require a personal engagement with feelings relating to bodily frailty, universal dependency, mortality and other prickly aspects of the human condition with which it is associated. These aspects are all at play in the clinical encounter between a health professional and a patient with disability, but the layered and consequential nature of such interactions for the flourishing and empowerment of people with disabilities, as well as the disability movement as a whole, is poorly understood. Evidence suggests that mere tuition in social justice has limited effects on behaviour in relation to issues of inequality and exclusion. In this paper I reflect on how socialisation in an ableist world can shape how disability is positioned in the clinical encounter, potentially leading to interactions which embed inequality. Drawing on my own experience as disability studies scholar and disabled person, I then describe a teaching method for facilitating shifts in the personal relationships which health sciences students have to disability, in the context of broader attempts to create clinical spaces and relationships in which empathy and self-compassion are encouraged.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-10-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142406931","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"'Are you pregnant? If not, why not?': artificial reproductive technology and the trauma of infertility.","authors":"Soumya Kashyap, Priyanka Tripathi","doi":"10.1136/medhum-2023-012690","DOIUrl":"https://doi.org/10.1136/medhum-2023-012690","url":null,"abstract":"<p><p>The article scrutinises Rohini S. Rajagopal's work, <i>what's a lemon squeezer doing in my vagina</i> (2021), to illustrate the escalating medicalisation of infertile bodies. In a cultural context where reproductive concerns are construed as medical disorders demanding treatment and surveillance, medical professionals and pharmaceutical companies exploit these sociocultural dynamics to provide infertile couples with immediate solutions through Assisted Reproductive Technologies. Consequently, the study contributes a critical perspective to the field of medical humanities, initiating a nuanced discourse that interrogates the impact of terms such as 'living laboratories', 'baby machine', 'mother machine' and 'hope technology' on our comprehension of future motherhood. Drawing on feminist critiques of medicalisation, the article argues that biotechnology perpetuates the eighteenth-century biomedical metaphor of the body as a machine with replaceable parts. Notably, contemporary advancements in reproductive medicine allow for the replacement of perceived 'flawed' body parts, further objectifying them within this framework.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-10-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142366898","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Patients as knowledge partners in the context of complex chronic conditions.","authors":"Vox Jo Hsu, Megan Moodie, Abigail A Dumes, Emily Lim Rogers, Chelsey Carter, Emma Broder, Daisy Couture, Ilana Löwy, Emily Mendenhall","doi":"10.1136/medhum-2024-012957","DOIUrl":"10.1136/medhum-2024-012957","url":null,"abstract":"<p><p>This article conveys how taking patient knowledge seriously can improve patient experience and further medical science. In clinical contexts related to infection-associated chronic conditions and other complex chronic illnesses, patient knowledge is often undervalued, even when clinicians have limited training in diagnosing and treating a particular condition. Despite growing acknowledgement of the importance of patients as 'stakeholders', clinicians and medical researchers have yet to fully develop ways to evaluate and, when appropriate, meaningfully incorporate patient knowledge-experiential, scientific, social scientific, historical or otherwise-into clinical practice and research. We argue that there are opportunities for clinicians and researchers to collaborate with patients and colleagues from the social sciences and humanities. We use two examples to demonstrate why patient knowledge should inform medical engagement with chronic and complex conditions. The first comes from a disability studies scholar who describes the social biases that can sideline patient expertise, and the second is from an anthropologist whose reading in medical humanities led to an effective treatment for her recovery. Rather than merely acknowledging 'lived experience', clinical and research teams should include patients with complex chronic conditions as 'knowledge partners'. These patients occupy unique and valuable epistemological positions, and their knowledge should be considered with as much openness and rigour as other forms of medical knowledge. As more medical schools, residency programmes and hospitals emphasise the need for 'deep listening' and patient input, we encourage meaningful engagement with patients whose insights can provide crucial knowledge for clinical and scientific advancement.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-10-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141724717","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Data discrepancies: Italian ministry reports on abortion, contextualised.","authors":"Danielle Pullan, Payton Gannon","doi":"10.1136/medhum-2023-012852","DOIUrl":"10.1136/medhum-2023-012852","url":null,"abstract":"<p><p>The Italian Ministry of Health reports annually on activities related to abortion and fertility, providing quantitative data that looks ripe for analysis. Actors ranging from activists to medical providers to European courts have criticised the data as misleading, but the Ministry reports have not changed. In this piece, we bring together different perspectives on this data from inside and outside academia and offer guidance on how it should-and should not-be used in research.In this article, we collect a wide variety of publications ranging from civil society groups' reports to court decisions, academic articles and investigative reporting and harmonise the way they engage with the Italian Ministry of Health's data regarding abortion and particularly conscientious objection.Analyses rooted in the demographic and medical data about abortion seekers, the abortion rates over time, the different methods of abortion, etc are trustworthy and can be used to extrapolate levels of abortion access. This dataset on conscientious objectors systematically undercounts objectors, implying a false equivalence between people who do not object and people who actually work in an abortion service. We recommend that the Ministry report both the number of objectors and the number of medical doctors working in abortion services.The Italian Ministry of Health produces some valuable data about abortion, but conscientious objection is the key feature of abortion access in Italy, and this key datapoint is flawed. The Ministry could improve clarity and increase citizens' trust in government reports by adding data on the number of abortion providers.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-09-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140899784","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Staff disability data in UK higher education: Evidence from EDI reports.","authors":"Eirini-Christina Saloniki, Kristoffer Halvorsrud, Isabelle Whelan, Nishat Halim, Riya George, Chloe Orkin","doi":"10.1136/medhum-2024-012892","DOIUrl":"10.1136/medhum-2024-012892","url":null,"abstract":"<p><strong>Objectives: </strong>To explore how higher education institutions (HEIs) make transparent the data they collect on staff disability, and how this relates to existing equality, diversity and inclusion (EDI) charters.</p><p><strong>Design: </strong>Descriptive cross-sector quantitative study based on UK HEIs.</p><p><strong>Setting: </strong>Higher education sector in the UK.</p><p><strong>Participants: </strong>162 HEIs across the UK with information extracted from the Higher Education Statistics Agency (HESA), each institution's website and Advance HE.</p><p><strong>Primary and secondary outcome measures: </strong>Availability of a publicly available EDI report. Type of information on staff disability identified within the EDI report and level of detail, the latter derived from the number of different types of information provided in the report. Athena SWAN and Disability Confident award level for each HEI were used as a proxy for the sector's commitment to EDI.</p><p><strong>Results: </strong>Under a quarter of HEIs do not have an open EDI report online. The majority of Athena SWAN award holders make their EDI reports publicly available, which is similar by Disability Confident status. Russell Group universities are more likely to have a publicly available report. Regionally, EDI report availability is lowest in London. The level of detail with regards to staff disability varies, with more than half of institutions providing 'little detail' and just under a third 'some detail'. Athena SWAN award holders and Disability Confident members are twice as likely to provide 'some detail' than those which do not hold an award.</p><p><strong>Conclusions: </strong>Challenges remain to obtain a clear picture of staff with disabilities within higher education. The lack of both uniformity and transparency in EDI reporting with respect to disability hinders the ability to quantify staff with disabilities within higher education, develop meaningful interventions and address inequities more widely.</p>","PeriodicalId":46435,"journal":{"name":"Medical Humanities","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-09-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11503180/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141248841","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}