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非洲镰状细胞病、污名化与疼痛的交集。

The intersection of sickle cell disease, stigma, and pain in Africa.

作者信息

Anie Kofi A

机构信息

Imperial College London, Faculty of Medicine and London North West University Healthcare NHS Trust, Central Middlesex Hospital, London, United Kingdom.

出版信息

Hematology Am Soc Hematol Educ Program. 2024 Dec 6;2024(1):240-245. doi: 10.1182/hematology.2024000549.

Abstract

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.

摘要

镰状细胞病(SCD)是撒哈拉以南非洲地区一个重大的公共卫生问题,在该地区它是最普遍的遗传疾病,带来了众多医疗保健和社会文化挑战。对一名来自加纳阿散蒂地区的年轻女孩的案例研究表明,由于传统观念和误解将SCD视为一种精神折磨,围绕SCD存在着污名化现象。这种污名化导致社会排斥和歧视,影响着患者及其家庭。尽管SCD会带来严重且不可预测的疼痛,但有效的管理往往因医疗保健资源和基础设施有限而受到阻碍。在加纳和其他非洲国家,疼痛缓解不足以及缺乏专科护理使SCD患者的痛苦加剧。医疗保健提供者的反应从同情到不予理会各不相同,反映出医疗服务提供方面更广泛的系统性问题。污名化具有广泛影响,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的重要作用,例如加纳镰状细胞病基金会和加纳镰状细胞病协会提供的那些网络,它们有助于减少羞辱并改善SCD患者的生活。应对非洲SCD的复杂挑战需要全面的策略。改善医疗保健基础设施、促进社区教育以及建立强大的支持系统对于减轻SCD负担至关重要,这需要政府和非政府组织的共同参与。这些措施有助于为患有这种慢性病的个人创造一个更具包容性和理解性的环境,提高他们的生活质量和整体幸福感。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a2e8/11665707/a4efbab222fb/hem.2024000549_s1.jpg

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