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Patient Involvement and Rare Diseases in Italy: Narratives, Spirituality, and Legitimation in Healthcare. 病人参与和罕见疾病在意大利：叙事，精神，和合法化的医疗保健。
IF 1.5 3区 社会学
Medical Anthropology Pub Date : 2025-06-23 DOI: 10.1080/01459740.2025.2521749
Ilaria E Lesmo
{"title":"Patient Involvement and Rare Diseases in Italy: Narratives, Spirituality, and Legitimation in Healthcare.","authors":"Ilaria E Lesmo","doi":"10.1080/01459740.2025.2521749","DOIUrl":"https://doi.org/10.1080/01459740.2025.2521749","url":null,"abstract":"<p><p>Public representations of rare diseases often depict patients as neglected and isolated. In response, initiatives promoting patient involvement have emerged, with illness narratives considered as key tools. However, the relationship between narratives and involvement remains underexplored. Based on ethnographic research conducted in Piedmont (Italy), I explore the narratives of two patients, which are deeply entangled with spiritual and religious perspectives, and explore the forms of involvement that emerged within the clinical space. I suggest that, depending on how moral and structural conditions intertwine, patients may be differently legitimized: roles of \"experts of experience\" or \"implicated actors\" arose within the field.</p>","PeriodicalId":47460,"journal":{"name":"Medical Anthropology","volume":" ","pages":"1-15"},"PeriodicalIF":1.5,"publicationDate":"2025-06-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144477298","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}
引用次数: 0
"Is This Violence?" Subtlety, Doubt, and the Struggle to Narrate Transgressive Behavior in Denmark. “这是暴力吗？”微妙、怀疑和对丹麦违法行为的叙述。
IF 1.5 3区 社会学
Medical Anthropology Pub Date : 2025-06-13 DOI: 10.1080/01459740.2025.2517580
Ida Nielsen Sølvhøj
{"title":"\"Is This Violence?\" Subtlety, Doubt, and the Struggle to Narrate Transgressive Behavior in Denmark.","authors":"Ida Nielsen Sølvhøj","doi":"10.1080/01459740.2025.2517580","DOIUrl":"https://doi.org/10.1080/01459740.2025.2517580","url":null,"abstract":"<p><p>Based on multi-sited fieldwork in Denmark, I explore how Danish women and men negotiate their positions as potential victims of intimate partner violence: in particular, psychological violence. First, focusing on retrospective stories about everyday life, I argue that violence may be experienced as subtle and not necessarily noisy. Second, by turning my attention to public narratives about psychological violence, I demonstrate that they often fail to align with the interlocutors' stories. This, I suggest, can lead to transgressive behavior being interpreted as nonviolence. This article offers a detailed analysis of the subtle micro-mechanisms that underpin the first manifestations of violence.</p>","PeriodicalId":47460,"journal":{"name":"Medical Anthropology","volume":" ","pages":"1-16"},"PeriodicalIF":1.5,"publicationDate":"2025-06-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144286828","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}
引用次数: 0
Diagnostic Moments in the Rare Disease Life Narratives of Mitochondrial Disease Patients in Germany. 德国线粒体病患者罕见疾病生活叙事中的诊断时刻。
IF 1.5 3区 社会学
Medical Anthropology Pub Date : 2025-06-08 DOI: 10.1080/01459740.2025.2504366
Jacquelyne Luce
{"title":"Diagnostic Moments in the Rare Disease Life Narratives of Mitochondrial Disease Patients in Germany.","authors":"Jacquelyne Luce","doi":"10.1080/01459740.2025.2504366","DOIUrl":"https://doi.org/10.1080/01459740.2025.2504366","url":null,"abstract":"<p><p>I draw on interviews I conducted in Germany with four individuals who were eventually diagnosed with mitochondrial disease, a category of rare neurogenetic disorders. Rather than the diagnosis of mitochondrial disease serving as a threshold between a before and after, I show how multiple ″diagnostic moments″ generate and shape mitochondrial disease life narratives as affected individuals embody emergent medical knowledge and navigate scientific unknowns. Attending to the plurality of diagnostic moments in rare disease life narratives illuminates the fragmented temporalities and incoherencies of illness experiences, which are often erased by an emphasis on a singular diagnostic moment.</p>","PeriodicalId":47460,"journal":{"name":"Medical Anthropology","volume":" ","pages":"1-13"},"PeriodicalIF":1.5,"publicationDate":"2025-06-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144250288","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}
引用次数: 0
Remedios Caseros: Imperative Resilience Among Mexican Immigrants in the Bronx (USA) During the COVID-19 Pandemic. 雷麦黛丝·卡塞罗：在2019冠状病毒病大流行期间，布朗克斯（美国）墨西哥移民迫切的复原力。
IF 1.5 3区 社会学
Medical Anthropology Pub Date : 2025-05-26 DOI: 10.1080/01459740.2025.2507973
María Hernández, Alyshia Gálvez, Sandra Verdaguer, Samuel Martínez, César Ernesto Abadía-Barrero, Karen R Flórez
{"title":"<i>Remedios Caseros</i>: Imperative Resilience Among Mexican Immigrants in the Bronx (USA) During the COVID-19 Pandemic.","authors":"María Hernández, Alyshia Gálvez, Sandra Verdaguer, Samuel Martínez, César Ernesto Abadía-Barrero, Karen R Flórez","doi":"10.1080/01459740.2025.2507973","DOIUrl":"https://doi.org/10.1080/01459740.2025.2507973","url":null,"abstract":"<p><p>Communities with already high rates of non-communicable diseases, including Mexican immigrants living in the Bronx, were burdened further by the novel coronavirus. In this context, many individuals sought ways to prevent and mitigate symptoms of COVID-19, including homemade remedies. Twenty-five semi-structured interviews with Mexican immigrants living in the Bronx reveal how they devised and deployed <i>remedios caseros</i> (home remedies) during the COVID-19 pandemic. Participants attributed use of remedios caseros to factors such as overpacked hospitals and limited information from authoritative sources about preventing and alleviating COVID-19. Findings suggest that home remedies were a survival strategy born out of necessity, or imperative resilience.<b>Media teaser</b>: Mexican immigrants devised and deployed strategies around remedios caseros in response to the COVID-19 outbreak.</p>","PeriodicalId":47460,"journal":{"name":"Medical Anthropology","volume":" ","pages":"1-17"},"PeriodicalIF":1.5,"publicationDate":"2025-05-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144144054","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}
引用次数: 0
Immigrants to Health: Negotiating Liminality and Belonging with Cystic Fibrosis in Germany. 移民健康：谈判阈限和归属与囊性纤维化在德国。
IF 1.5 3区 社会学
Medical Anthropology Pub Date : 2025-05-23 DOI: 10.1080/01459740.2025.2507972
Stefan Reinsch
{"title":"Immigrants to Health: Negotiating Liminality and Belonging with Cystic Fibrosis in Germany.","authors":"Stefan Reinsch","doi":"10.1080/01459740.2025.2507972","DOIUrl":"https://doi.org/10.1080/01459740.2025.2507972","url":null,"abstract":"<p><p>Cystic fibrosis is a rare genetic disease that significantly reduces life expectancy. Therapy can delay the progression of the disease, but it is onerous, time-consuming and makes the disease more visible, creating a sense of not belonging to the healthy peer group that young people desperately want. Recent, very expensive advances in therapeutic interventions have dramatically reduced both the therapeutic load and the visibility of the condition. Drawing on a long-term ethnographic study in Germany, I explore how this changes the ways people with cystic fibrosis negotiate belonging, which is experienced as a metaphorical immigration into the world of the healthy.</p>","PeriodicalId":47460,"journal":{"name":"Medical Anthropology","volume":" ","pages":"1-16"},"PeriodicalIF":1.5,"publicationDate":"2025-05-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144127734","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}
引用次数: 0
"Not Too Different": Doing Resemblance, Enacting Boundaries in Sperm Donor Matching For/By Dutch Intended Parents. “不太不同”：荷兰准父母在精子捐赠者匹配中做相似，制定界限。
IF 1.5 3区 社会学
Medical Anthropology Pub Date : 2025-05-14 DOI: 10.1080/01459740.2025.2504364
Roos Metselaar
{"title":"\"Not Too Different\": Doing Resemblance, Enacting Boundaries in Sperm Donor Matching For/By Dutch Intended Parents.","authors":"Roos Metselaar","doi":"10.1080/01459740.2025.2504364","DOIUrl":"https://doi.org/10.1080/01459740.2025.2504364","url":null,"abstract":"<p><p>Scholars writing about selecting gamete donors have emphasized the importance of resemblance when choosing a donor. However, while they have thoroughly researched the question of why prospective parents consider resemblance important, <i>how</i> resemblance is <i>done</i> remains unexplored. Adopting a material semiotics approach and employing ethnographic research about sperm-donor matching for and by prospective parents in the Netherlands, I argue that resemblance matching entails enacting boundaries between people deemed \"similar enough\" and \"too different.\" In relational practices of (not) doing kinship and doing resemblance, race is often enacted as a relevant difference.</p>","PeriodicalId":47460,"journal":{"name":"Medical Anthropology","volume":" ","pages":"1-14"},"PeriodicalIF":1.5,"publicationDate":"2025-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144081405","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}
引用次数: 0
Caring for Women of Color: Community-Based Doulas' Strategies in Hospital Birth in Los Angeles. 照顾有色人种妇女：洛杉矶社区助产师在医院分娩中的策略。
IF 1.5 3区 社会学
Medical Anthropology Pub Date : 2025-05-04 DOI: 10.1080/01459740.2025.2495633
Kim Sigmund
{"title":"Caring for Women of Color: Community-Based Doulas' Strategies in Hospital Birth in Los Angeles.","authors":"Kim Sigmund","doi":"10.1080/01459740.2025.2495633","DOIUrl":"https://doi.org/10.1080/01459740.2025.2495633","url":null,"abstract":"<p><p>In the United States, women of color experience worse pregnancy and birth outcomes than white women. Likewise, many women of color report facing discrimination from perinatal health providers, and many experience precarity that can negatively impact birth experiences and outcomes. In this context, more women of color now embrace the use of community-based doulas. Using ethnographic data, I argue that community-based doulas, as members of the communities in which they offer their services, are uniquely able to negotiate the tensions between their clients and biomedical birth practitioners to engender acts of transformative agency and forward the cause of reproductive justice.</p>","PeriodicalId":47460,"journal":{"name":"Medical Anthropology","volume":" ","pages":"1-14"},"PeriodicalIF":1.5,"publicationDate":"2025-05-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144024691","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}
引用次数: 0
The Negotiation of Medical Treatments by Parents of Children with Congenital Adrenal Hyperplasia in Poland. 波兰先天性肾上腺增生症患儿家长医疗谈判。
IF 1.5 3区 社会学
Medical Anthropology Pub Date : 2025-05-01 DOI: 10.1080/01459740.2025.2464620
Magdalena Radkowska-Walkowicz, Anna Kucharska
{"title":"The Negotiation of Medical Treatments by Parents of Children with Congenital Adrenal Hyperplasia in Poland.","authors":"Magdalena Radkowska-Walkowicz, Anna Kucharska","doi":"10.1080/01459740.2025.2464620","DOIUrl":"https://doi.org/10.1080/01459740.2025.2464620","url":null,"abstract":"<p><p>Congenital adrenal hyperplasia (CAH) is a rare inherited disease that requires continuous home-based treatment. The increasing accessibility of medical information and the presence of an active online community-particularly a dedicated Facebook group-enable parents of children with CAH to become engaged participants in discussions about therapy and innovative solutions. Drawing on ethnographic research, this study explores the complex dynamics of medical decision-making and negotiation between parents and doctors. Key areas of contention include: 1. Medication dosage. 2. The use of cortisol pump technology. 3. The availability of emergency hydrocortisone injection kits. 4. Early genital surgery. While parents actively seek knowledge and challenge medical approaches, their influence on biomedical practices remains limited. The study argues that these negotiations, though often subtle and slow, contribute to changing treatment and become the part of the \"logic of care\".</p>","PeriodicalId":47460,"journal":{"name":"Medical Anthropology","volume":" ","pages":"1-15"},"PeriodicalIF":1.5,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143989624","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}
引用次数: 0
Parental Care as Infrastructure for Adults with Intellectual Disabilities in Norway. 父母照顾作为挪威智力残疾成人的基础设施。
IF 1.5 3区 社会学
Medical Anthropology Pub Date : 2025-04-30 DOI: 10.1080/01459740.2025.2495627
Jenny Frogner, Halvor Hanisch
{"title":"Parental Care as Infrastructure for Adults with Intellectual Disabilities in Norway.","authors":"Jenny Frogner, Halvor Hanisch","doi":"10.1080/01459740.2025.2495627","DOIUrl":"https://doi.org/10.1080/01459740.2025.2495627","url":null,"abstract":"<p><p>We explore the care work of parents in the lives of adults with intellectual disabilities in Norway. We theorize these parental contributions as a form of care infrastructure. Through their presence in the daily lives of the persons with intellectual disabilities as well as through maintenance work and repair work on welfare services, parents respond to unpredictable care provision in the welfare state. These efforts sometimes entail invention and result in new types of care structures, which we call \"care pioneering.\"</p>","PeriodicalId":47460,"journal":{"name":"Medical Anthropology","volume":" ","pages":"1-14"},"PeriodicalIF":1.5,"publicationDate":"2025-04-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143988077","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}
引用次数: 0
"Only the Immunocompromised and Elderly Will Die": Precarity and Care in the United States. “只有免疫功能低下和老年人才会死亡”：美国的不稳定性和护理。
IF 1.5 3区 社会学
Medical Anthropology Pub Date : 2025-04-21 DOI: 10.1080/01459740.2025.2495640
Lisa J Hardy, Carly Thompson-Campitor
{"title":"\"Only the Immunocompromised and Elderly Will Die\": Precarity and Care in the United States.","authors":"Lisa J Hardy, Carly Thompson-Campitor","doi":"10.1080/01459740.2025.2495640","DOIUrl":"https://doi.org/10.1080/01459740.2025.2495640","url":null,"abstract":"<p><p>During the first days of COVID-19, stories about health and life circulated quickly and with resolve. The phrase \"only the immunocompromised and elderly will die\" became a touchpoint of disagreement, meaning fascist sacrifice to some and comfort to others. Examples provide insights into how, in times of disruption, meanings embedded in diffusive phrases expose and reinforce existing systems of power. We use the concept of <i>shoring</i>, borrowed from engineering, to discuss how health narratives reinforce and challenge existing structures of power and injustice in moments of social and political strife.</p>","PeriodicalId":47460,"journal":{"name":"Medical Anthropology","volume":" ","pages":"1-9"},"PeriodicalIF":1.5,"publicationDate":"2025-04-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144024682","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}
引用次数: 0
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