'Only parents can understand the problems and needs of children with thalassaemia': parental activism for thalassaemia care in Northern India.
'Only parents can understand the problems and needs of children with thalassaemia': parental activism for thalassaemia care in Northern India.
复制标题
“只有父母才能理解地中海贫血儿童的问题和需求”：印度北部地中海贫血护理中家长的积极行动。
DOI：
10.1080/13648470.2023.2180258
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发表时间：
2023
影响因子：
1.8
通讯作者：
Unnithan M
中科院分区：
文献类型：
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作者：
Unnithan M
不断发展的遗传学知识和改进的临床护理重新塑造了那些患有慢性不治之症的人及其家人的生活选择。然而，实现护理需要复杂的导航来获得重要的治疗方法，这对个人或他们的家庭护理人员来说往往是困难的。在这篇文章中，我们探讨了印度北部一座城市地中海贫血(一种遗传性血液疾病)儿童的父母的挣扎和策略，他们走到一起，是为了确保孩子更好的长期健康。关注家庭在寻求有保障地获得诸如过滤血液等救生物质时如何聚在一起和保持分离的方式，提供了对生物-社会战略在工作中的多样性的洞察。我们认为，不仅是家庭关系和亲属关系，而且随着新的基于权利的语言、不断发展的治疗方法和国家支持的出现，生物社会性本身也被重塑，这为地中海贫血的年轻人尽可能正常地生活提供了新的可能性。
Evolving knowledge of genetics and improved clinical care have re-shaped life choices for those suffering from chronic, incurable conditions and their families. Yet the realisation of care requires complex navigation to access vital therapies which is often difficult for individuals or their family carers. In the article, we explore the struggles and strategies of parents of children with thalassemia (a genetically inherited blood disorder) in a North Indian city, who have come together to ensure better long-term health of their children. A focus on the ways in which families come together and remain apart in their quest for guaranteed access to life-saving substances such as filtered blood, provides insight into the diversity of bio-social strategies at work. It is not only family relationships and kinship, we suggest, but bio-sociality itself which is reshaped with the advent of new rights-based languages, evolving therapies and state support which hold out new possibilities for young people with thalassemia to live as normal a life-course as possible.