非洲镰状细胞病、病耻感和疼痛的交集。

IF 2.9 3区 教育学 Q1 EDUCATION, SCIENTIFIC DISCIPLINES Hematology. American Society of Hematology. Education Program Pub Date : 2024-12-06 DOI:10.1182/hematology.2024000549
Kofi A Anie
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引用次数: 0

摘要

镰状细胞病(SCD)是撒哈拉以南非洲的一个重大公共卫生问题,在那里它是最普遍的遗传疾病,提出了许多卫生保健和社会文化挑战。一个来自加纳阿散蒂地区的年轻女孩的案例研究说明了围绕SCD的耻辱,这是由传统信仰和误解所驱动的,这些信仰和误解将SCD视为精神上的痛苦。这种污名导致社会排斥和歧视,影响到受影响的个人及其家庭。尽管与SCD相关的严重和不可预测的疼痛,但有效的管理往往受到有限的卫生保健资源和基础设施的阻碍。在加纳和其他非洲国家,疼痛缓解不足和缺乏专业护理加剧了SCD患者的痛苦。卫生保健提供者的反应各不相同,从同情到解雇,反映了医疗服务中更广泛的系统性问题。耻辱具有广泛的影响,包括社会排斥、心理困扰和教育挫折。该案例研究强调了社区教育和支持网络,如加纳镰状细胞基金会和加纳镰状细胞协会提供的网络,在减少羞辱和改善受SCD影响者的生活方面的重要作用。应对非洲可持续发展的复杂挑战需要全面的战略。在政府和非政府组织的参与下,改善卫生保健基础设施、促进社区教育和建立强有力的支持系统对于减轻慢性阻塞性肺病的负担至关重要。这些措施有助于为患有这种慢性疾病的个人创造一个更加包容和理解的环境,提高他们的生活质量和整体福祉。
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The intersection of sickle cell disease, stigma, and pain in Africa.

Sickle cell disease (SCD) is a significant public health concern in sub-Saharan Africa, where it is the most prevalent genetic disorder, presenting numerous health care and sociocultural challenges. A case study of a young girl from Ghana's Ashanti region illustrates the stigma surrounding SCD, driven by traditional beliefs and misconceptions that perceive SCD as a spiritual affliction. This stigma results in social ostracism and discrimination, impacting affected individuals and their families. Despite the severe and unpredictable pain associated with SCD, effective management is often hampered by limited health care resources and infrastructure. In Ghana and other African countries, inadequate pain relief and a lack of specialized care worsen the suffering of people with SCD. Health care providers' responses vary from empathy to dismissal, reflecting broader systemic issues in care delivery. Stigma has extensive effects, including social exclusion, psychological distress, and educational setbacks. The case study underscores the vital role of community education and support networks, such as those provided by the Sickle Cell Foundation of Ghana and Sickle Cell Association of Ghana, in reducing humiliation and enhancing the lives of those affected by SCD. Addressing the complex challenges of SCD in Africa requires comprehensive strategies. Improving the health care infrastructure, promoting community education, and establishing robust support systems are crucial to alleviating the burden of SCD, with the involvement of both government and nongovernmental organizations. These measures help create a more inclusive and understanding environment for individuals living with this chronic condition, enhancing their quality of life and overall well-being.

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来源期刊
Hematology. American Society of Hematology. Education Program
Hematology. American Society of Hematology. Education Program EDUCATION, SCIENTIFIC DISCIPLINES-HEMATOLOGY
CiteScore
4.70
自引率
3.30%
发文量
0
期刊介绍: Hematology, the ASH Education Program, is published annually by the American Society of Hematology (ASH) in one volume per year.
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