别叫我 "西克勒":正视镰状细胞病的耻辱。

IF 7.6 2区 医学 Q1 HEMATOLOGY
HemaSphere Pub Date : 2024-08-13 DOI:10.1002/hem3.137
Edeghonghon Olayemi
{"title":"别叫我 \"西克勒\":正视镰状细胞病的耻辱。","authors":"Edeghonghon Olayemi","doi":"10.1002/hem3.137","DOIUrl":null,"url":null,"abstract":"<p>In 2008, the World Health Organization (WHO) declared sickle cell disease (SCD) a public health problem. It is a global disease endemic in sub-Saharan Africa (SSA), where the vast majority of babies with SCD are born annually. Although SCD is considered rare in the European Union (EU), where there has been a gradual increase in prevalence, usually attributed to increased migration from parts of the world such as SSA. Advances in the medical management of SCD have led to a reduction in mortality. This reduction is skewed in favor of patients living in high-income countries, compared to those living in low- and middle-income countries where the disease is endemic. The associated organ damage as a result of increased life expectancy and the higher burden of psycho-social challenges faced daily by millions who live with SCD increases the frequency of interaction between people living with SCD and health care professionals.</p><p>The word “sickler” first appeared in the English language over four centuries ago; it was initially used to describe someone who works with a sickle. However, it came to be used to describe a person living with SCD. There is no doubt that it has become a derogatory word. People living with SCD regard being called “a sickler” as negative. They see it as a label that forces them to be seen as different or incapable, making them open to marginalization, stigmatization, and discrimination. It is unfortunate and unacceptable that healthcare workers, including specialist physicians, persist in using the derogatory word. It is still heard in the corridors, wards, and clinics of hospitals across the world. A quick literature search shows that editors and reviewers of medical publications persist in allowing its use, seemingly oblivious to the emotional pain and suffering it brings to the very people health workers are supposed to care for.</p><p>Globally, even in countries where it is endemic, SCD is poorly understood. There is a continued high prevalence of stigmatization against people living with SCD. This occurs as a result of society's misunderstanding of SCD. Health stigma has been defined as a social process with the following characteristics: exclusion, rejection, blame, and devaluation resulting from an experience or anticipation of adverse social judgment about a person or group of people who have a specific health problem.<span><sup>1</sup></span> Among people living with SCD, stigma affects every aspect of daily living and may negatively impact relationships with peers, friends, and family.<span><sup>2</sup></span></p><p>Stigmatization in SCD care is known to lead to poorer outcomes, such as being reluctant to seek in-hospital care during acute crisis events as patients, over time, develop an aversion to seeking health care services, and when they do, there is often a delay in getting attention and a general poor satisfaction with the care provided. This reluctance has been reported to include obtaining routine health care services, as demonstrated by a study carried out by Galadanci et al.,<span><sup>3</sup></span> who reported that stigma associated with SCD is a barrier against seeking and using premarital genetic counseling and screening in endemic areas.<span><sup>3</sup></span> Furthermore, it has been demonstrated that stigma has a significant influence on health and health outcomes. People living with SCD are known to have stopped treatment to avoid drawing unnecessary attention to themselves as a result of an initial experience of stigma from healthcare workers. Again, the stigmatizing language used in medical records by senior physicians to describe patients with SCD negatively influences trainees such as medical students, resident doctors, and fellows in their attitudes toward SCD patients, including their medication prescribing behavior; this important pathway for propagating bias from one clinician to the other is often overlooked.<span><sup>4</sup></span></p><p>A study among emergency physicians who are often the first doctors a patient with SCD sees during episodes of pain crisis showed that over half of the physicians surveyed used the term “sickler” frequently or always. They also demonstrated a statistically significant relationship between emergency physician negative attitudes toward people with SCD and the use of the derogatory description.<span><sup>5</sup></span> The demonstrated negative impact of the continued use of stigmatizing language in the care of SCD patients is important because, during acute pain events, some SCD patients are continuously labeled without any justification or evidence as having opioid-seeking or opioid-dependent behavior. Globally, it is known that patients are not treated equally when they present for medical care and that the quality of care received is often determined by their racial/ethnic identity; it is then not surprising that patients with SCD who are mostly of African origin are often discriminated against. When compared to people living with other chronic medical disorders such as asthma, diabetes, and cystic fibrosis, people living with SCD suffer more discrimination and stigmatization. In SSA, where SCD is endemic, very little resource is budgeted toward the care of people living with SCD compared to other chronic diseases like diabetes and hypertension.</p><p>It is no longer acceptable for our patients living with SCD to be identified with derogatory labels. Health workers cannot continue to hide behind the mask of ignorance. In 2016, several organizations including UNAIDS launched the agenda for zero discrimination in health care settings.<span><sup>6</sup></span> This agenda called on all stakeholders to protect human rights and health. Almost a decade later, the fact that we are still faced with stigma and discrimination in healthcare globally is a call to action; our patients deserve better. While waiting for health authorities worldwide to implement formal policies such as requiring healthcare facilities to develop and enforce antidiscrimination policies, simple and easy-to-attain steps like paying attention to the language we use in medical records and in hospitals may go a long way toward promoting patient-centered care and reducing healthcare disparities for stigmatized populations.<span><sup>4</sup></span></p><p>Edeghonghon Olayemi is the sole contributor to this article.</p><p>Edeghonghon Olayemi is the site principal investigator of the HIBISCUS Study 4202-HEM-301 (Sickle Cell Disease).</p><p>The authors have no funding to report.</p>","PeriodicalId":12982,"journal":{"name":"HemaSphere","volume":null,"pages":null},"PeriodicalIF":7.6000,"publicationDate":"2024-08-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11322233/pdf/","citationCount":"0","resultStr":"{\"title\":\"Don't call me “Sickler”: Confronting stigma in sickle cell disease\",\"authors\":\"Edeghonghon Olayemi\",\"doi\":\"10.1002/hem3.137\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p>In 2008, the World Health Organization (WHO) declared sickle cell disease (SCD) a public health problem. It is a global disease endemic in sub-Saharan Africa (SSA), where the vast majority of babies with SCD are born annually. Although SCD is considered rare in the European Union (EU), where there has been a gradual increase in prevalence, usually attributed to increased migration from parts of the world such as SSA. Advances in the medical management of SCD have led to a reduction in mortality. This reduction is skewed in favor of patients living in high-income countries, compared to those living in low- and middle-income countries where the disease is endemic. The associated organ damage as a result of increased life expectancy and the higher burden of psycho-social challenges faced daily by millions who live with SCD increases the frequency of interaction between people living with SCD and health care professionals.</p><p>The word “sickler” first appeared in the English language over four centuries ago; it was initially used to describe someone who works with a sickle. However, it came to be used to describe a person living with SCD. There is no doubt that it has become a derogatory word. People living with SCD regard being called “a sickler” as negative. They see it as a label that forces them to be seen as different or incapable, making them open to marginalization, stigmatization, and discrimination. It is unfortunate and unacceptable that healthcare workers, including specialist physicians, persist in using the derogatory word. It is still heard in the corridors, wards, and clinics of hospitals across the world. A quick literature search shows that editors and reviewers of medical publications persist in allowing its use, seemingly oblivious to the emotional pain and suffering it brings to the very people health workers are supposed to care for.</p><p>Globally, even in countries where it is endemic, SCD is poorly understood. There is a continued high prevalence of stigmatization against people living with SCD. This occurs as a result of society's misunderstanding of SCD. Health stigma has been defined as a social process with the following characteristics: exclusion, rejection, blame, and devaluation resulting from an experience or anticipation of adverse social judgment about a person or group of people who have a specific health problem.<span><sup>1</sup></span> Among people living with SCD, stigma affects every aspect of daily living and may negatively impact relationships with peers, friends, and family.<span><sup>2</sup></span></p><p>Stigmatization in SCD care is known to lead to poorer outcomes, such as being reluctant to seek in-hospital care during acute crisis events as patients, over time, develop an aversion to seeking health care services, and when they do, there is often a delay in getting attention and a general poor satisfaction with the care provided. This reluctance has been reported to include obtaining routine health care services, as demonstrated by a study carried out by Galadanci et al.,<span><sup>3</sup></span> who reported that stigma associated with SCD is a barrier against seeking and using premarital genetic counseling and screening in endemic areas.<span><sup>3</sup></span> Furthermore, it has been demonstrated that stigma has a significant influence on health and health outcomes. People living with SCD are known to have stopped treatment to avoid drawing unnecessary attention to themselves as a result of an initial experience of stigma from healthcare workers. Again, the stigmatizing language used in medical records by senior physicians to describe patients with SCD negatively influences trainees such as medical students, resident doctors, and fellows in their attitudes toward SCD patients, including their medication prescribing behavior; this important pathway for propagating bias from one clinician to the other is often overlooked.<span><sup>4</sup></span></p><p>A study among emergency physicians who are often the first doctors a patient with SCD sees during episodes of pain crisis showed that over half of the physicians surveyed used the term “sickler” frequently or always. They also demonstrated a statistically significant relationship between emergency physician negative attitudes toward people with SCD and the use of the derogatory description.<span><sup>5</sup></span> The demonstrated negative impact of the continued use of stigmatizing language in the care of SCD patients is important because, during acute pain events, some SCD patients are continuously labeled without any justification or evidence as having opioid-seeking or opioid-dependent behavior. Globally, it is known that patients are not treated equally when they present for medical care and that the quality of care received is often determined by their racial/ethnic identity; it is then not surprising that patients with SCD who are mostly of African origin are often discriminated against. When compared to people living with other chronic medical disorders such as asthma, diabetes, and cystic fibrosis, people living with SCD suffer more discrimination and stigmatization. In SSA, where SCD is endemic, very little resource is budgeted toward the care of people living with SCD compared to other chronic diseases like diabetes and hypertension.</p><p>It is no longer acceptable for our patients living with SCD to be identified with derogatory labels. Health workers cannot continue to hide behind the mask of ignorance. In 2016, several organizations including UNAIDS launched the agenda for zero discrimination in health care settings.<span><sup>6</sup></span> This agenda called on all stakeholders to protect human rights and health. Almost a decade later, the fact that we are still faced with stigma and discrimination in healthcare globally is a call to action; our patients deserve better. While waiting for health authorities worldwide to implement formal policies such as requiring healthcare facilities to develop and enforce antidiscrimination policies, simple and easy-to-attain steps like paying attention to the language we use in medical records and in hospitals may go a long way toward promoting patient-centered care and reducing healthcare disparities for stigmatized populations.<span><sup>4</sup></span></p><p>Edeghonghon Olayemi is the sole contributor to this article.</p><p>Edeghonghon Olayemi is the site principal investigator of the HIBISCUS Study 4202-HEM-301 (Sickle Cell Disease).</p><p>The authors have no funding to report.</p>\",\"PeriodicalId\":12982,\"journal\":{\"name\":\"HemaSphere\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":7.6000,\"publicationDate\":\"2024-08-13\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11322233/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"HemaSphere\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://onlinelibrary.wiley.com/doi/10.1002/hem3.137\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"HEMATOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"HemaSphere","FirstCategoryId":"3","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1002/hem3.137","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"HEMATOLOGY","Score":null,"Total":0}
引用次数: 0

摘要

2008 年,世界卫生组织 (WHO) 宣布镰状细胞病 (SCD) 为公共卫生问题。这是一种流行于撒哈拉以南非洲(SSA)的全球性疾病,每年绝大多数患有 SCD 的婴儿都出生在撒哈拉以南非洲。虽然 SCD 在欧盟(EU)被认为是罕见病,但其发病率却在逐渐上升,这通常归因于从撒哈拉以南非洲等地移民的增加。SCD 医疗管理方面的进步已导致死亡率下降。与生活在疾病流行的中低收入国家的患者相比,生活在高收入国家的患者的死亡率有所下降。由于预期寿命的延长而导致的相关器官损伤,以及数百万 SCD 患者每天面临的更大的社会心理挑战负担,增加了 SCD 患者与医疗保健专业人员之间的互动频率。然而,后来它被用来描述 SCD 患者。毫无疑问,它已成为一个贬义词。SCD 患者认为被称为 "镰刀手 "是负面的。他们认为这是一个迫使他们被视为与众不同或没有能力的标签,使他们容易被边缘化、污名化和歧视。令人遗憾和无法接受的是,包括专科医生在内的医护人员仍在使用这个贬义词。在世界各地医院的走廊、病房和诊所里,人们仍然能听到这个词。在全球范围内,即使在 SCD 流行的国家,人们对它的了解也很少。针对 SCD 患者的污名化现象仍然十分普遍。这是因为社会对 SCD 的误解。健康污名化被定义为具有以下特征的社会过程:由于经历或预期社会对有特定健康问题的个人或群体的不利判断而产生的排斥、拒绝、指责和贬低。众所周知,SCD 护理中的污名化会导致较差的结果,例如在急性危机事件中患者不愿意寻求院内护理,因为随着时间的推移,患者会对寻求医疗保健服务产生厌恶感,而当他们寻求医疗保健服务时,往往会延迟得到关注,并且对所提供的护理普遍不满意。Galadanci 等人进行的一项研究3 表明,在疾病流行的地区,与 SCD 相关的耻辱感是寻求和使用婚前遗传咨询和筛查的障碍。据了解,SCD 患者曾因最初受到医护人员的污名化而停止治疗,以避免引起不必要的关注。同样,资深医生在病历中描述 SCD 患者时所使用的污名化语言对医科学生、住院医生和研究员等受训者对 SCD 患者的态度产生了负面影响,包括他们的处方用药行为;这一将偏见从一名临床医生传播到另一名临床医生的重要途径常常被忽视。4 一项针对急诊医生的研究显示,超过半数的受访医生经常或总是使用 "病态患者 "一词。5 在护理 SCD 患者的过程中持续使用污名化语言所产生的负面影响是非常重要的,因为在急性疼痛事件中,一些 SCD 患者在没有任何正当理由或证据的情况下不断被贴上寻求阿片类药物或阿片类药物依赖行为的标签。在全球范围内,众所周知,患者在接受医疗护理时并没有得到平等的对待,他们所接受的护理质量往往取决于他们的种族/民族身份;因此,以非洲裔为主的 SCD 患者经常受到歧视也就不足为奇了。与哮喘、糖尿病和囊性纤维化等其他慢性疾病患者相比,SCD 患者遭受的歧视和侮辱更多。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Don't call me “Sickler”: Confronting stigma in sickle cell disease

In 2008, the World Health Organization (WHO) declared sickle cell disease (SCD) a public health problem. It is a global disease endemic in sub-Saharan Africa (SSA), where the vast majority of babies with SCD are born annually. Although SCD is considered rare in the European Union (EU), where there has been a gradual increase in prevalence, usually attributed to increased migration from parts of the world such as SSA. Advances in the medical management of SCD have led to a reduction in mortality. This reduction is skewed in favor of patients living in high-income countries, compared to those living in low- and middle-income countries where the disease is endemic. The associated organ damage as a result of increased life expectancy and the higher burden of psycho-social challenges faced daily by millions who live with SCD increases the frequency of interaction between people living with SCD and health care professionals.

The word “sickler” first appeared in the English language over four centuries ago; it was initially used to describe someone who works with a sickle. However, it came to be used to describe a person living with SCD. There is no doubt that it has become a derogatory word. People living with SCD regard being called “a sickler” as negative. They see it as a label that forces them to be seen as different or incapable, making them open to marginalization, stigmatization, and discrimination. It is unfortunate and unacceptable that healthcare workers, including specialist physicians, persist in using the derogatory word. It is still heard in the corridors, wards, and clinics of hospitals across the world. A quick literature search shows that editors and reviewers of medical publications persist in allowing its use, seemingly oblivious to the emotional pain and suffering it brings to the very people health workers are supposed to care for.

Globally, even in countries where it is endemic, SCD is poorly understood. There is a continued high prevalence of stigmatization against people living with SCD. This occurs as a result of society's misunderstanding of SCD. Health stigma has been defined as a social process with the following characteristics: exclusion, rejection, blame, and devaluation resulting from an experience or anticipation of adverse social judgment about a person or group of people who have a specific health problem.1 Among people living with SCD, stigma affects every aspect of daily living and may negatively impact relationships with peers, friends, and family.2

Stigmatization in SCD care is known to lead to poorer outcomes, such as being reluctant to seek in-hospital care during acute crisis events as patients, over time, develop an aversion to seeking health care services, and when they do, there is often a delay in getting attention and a general poor satisfaction with the care provided. This reluctance has been reported to include obtaining routine health care services, as demonstrated by a study carried out by Galadanci et al.,3 who reported that stigma associated with SCD is a barrier against seeking and using premarital genetic counseling and screening in endemic areas.3 Furthermore, it has been demonstrated that stigma has a significant influence on health and health outcomes. People living with SCD are known to have stopped treatment to avoid drawing unnecessary attention to themselves as a result of an initial experience of stigma from healthcare workers. Again, the stigmatizing language used in medical records by senior physicians to describe patients with SCD negatively influences trainees such as medical students, resident doctors, and fellows in their attitudes toward SCD patients, including their medication prescribing behavior; this important pathway for propagating bias from one clinician to the other is often overlooked.4

A study among emergency physicians who are often the first doctors a patient with SCD sees during episodes of pain crisis showed that over half of the physicians surveyed used the term “sickler” frequently or always. They also demonstrated a statistically significant relationship between emergency physician negative attitudes toward people with SCD and the use of the derogatory description.5 The demonstrated negative impact of the continued use of stigmatizing language in the care of SCD patients is important because, during acute pain events, some SCD patients are continuously labeled without any justification or evidence as having opioid-seeking or opioid-dependent behavior. Globally, it is known that patients are not treated equally when they present for medical care and that the quality of care received is often determined by their racial/ethnic identity; it is then not surprising that patients with SCD who are mostly of African origin are often discriminated against. When compared to people living with other chronic medical disorders such as asthma, diabetes, and cystic fibrosis, people living with SCD suffer more discrimination and stigmatization. In SSA, where SCD is endemic, very little resource is budgeted toward the care of people living with SCD compared to other chronic diseases like diabetes and hypertension.

It is no longer acceptable for our patients living with SCD to be identified with derogatory labels. Health workers cannot continue to hide behind the mask of ignorance. In 2016, several organizations including UNAIDS launched the agenda for zero discrimination in health care settings.6 This agenda called on all stakeholders to protect human rights and health. Almost a decade later, the fact that we are still faced with stigma and discrimination in healthcare globally is a call to action; our patients deserve better. While waiting for health authorities worldwide to implement formal policies such as requiring healthcare facilities to develop and enforce antidiscrimination policies, simple and easy-to-attain steps like paying attention to the language we use in medical records and in hospitals may go a long way toward promoting patient-centered care and reducing healthcare disparities for stigmatized populations.4

Edeghonghon Olayemi is the sole contributor to this article.

Edeghonghon Olayemi is the site principal investigator of the HIBISCUS Study 4202-HEM-301 (Sickle Cell Disease).

The authors have no funding to report.

求助全文
通过发布文献求助,成功后即可免费获取论文全文。 去求助
来源期刊
HemaSphere
HemaSphere Medicine-Hematology
CiteScore
6.10
自引率
4.50%
发文量
2776
审稿时长
7 weeks
期刊介绍: HemaSphere, as a publication, is dedicated to disseminating the outcomes of profoundly pertinent basic, translational, and clinical research endeavors within the field of hematology. The journal actively seeks robust studies that unveil novel discoveries with significant ramifications for hematology. In addition to original research, HemaSphere features review articles and guideline articles that furnish lucid synopses and discussions of emerging developments, along with recommendations for patient care. Positioned as the foremost resource in hematology, HemaSphere augments its offerings with specialized sections like HemaTopics and HemaPolicy. These segments engender insightful dialogues covering a spectrum of hematology-related topics, including digestible summaries of pivotal articles, updates on new therapies, deliberations on European policy matters, and other noteworthy news items within the field. Steering the course of HemaSphere are Editor in Chief Jan Cools and Deputy Editor in Chief Claire Harrison, alongside the guidance of an esteemed Editorial Board comprising international luminaries in both research and clinical realms, each representing diverse areas of hematologic expertise.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
确定
请完成安全验证×
copy
已复制链接
快去分享给好友吧!
我知道了
右上角分享
点击右上角分享
0
联系我们:info@booksci.cn Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。 Copyright © 2023 布克学术 All rights reserved.
京ICP备2023020795号-1
ghs 京公网安备 11010802042870号
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术官方微信