Atkin K, Ahmad W I
Centre for Research in Primary Care, School of Medicine, University of Leeds, UK.
Soc Sci Med. 2001 Sep;53(5):615-26. doi: 10.1016/s0277-9536(00)00364-6.
This qualitative paper explores the strategies and resources young people use to cope with sickle cell disorder or thalassaemia major, two haemoglobin disorders with serious implications for health and survival. By focusing on coping strategies, we explore how young people attempt to take control over their lives. The respondents, largely of South Asian and African Caribbean origin, aged between 10 and 19 years, valued maintaining a normal' life and struggled to achieve this normalcy. Strategies were employed to minimise difference from peers but these strategies remained vulnerable. Coping occurred in a dynamic space, involving negotiation and engagement with both personal and structural factors. Threats to normalcy did not always reside in the condition; life transitions, changes in social relationships and racist. disablist or sexist marginalisation also threatened coping strategies.
这篇定性研究论文探讨了年轻人用于应对镰状细胞病或重型地中海贫血的策略和资源，这两种血红蛋白疾病对健康和生存有着严重影响。通过关注应对策略，我们探究年轻人如何试图掌控自己的生活。受访者主要来自南亚和非洲加勒比地区，年龄在10至19岁之间，他们重视维持“正常”生活，并努力实现这种常态。他们采用各种策略来尽量减少与同龄人之间的差异，但这些策略仍然很脆弱。应对发生在一个动态的空间中，涉及与个人和结构因素的协商与互动。对常态的威胁并不总是存在于疾病本身；生活转变、社会关系的变化以及种族主义、残疾歧视或性别歧视的边缘化也会威胁到应对策略。
