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首页> 外文期刊>Qualitative health research >I've never not had it so I don't really know what it's like not to: nondifference and biographical disruption among children and young people with cystic fibrosis.
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I've never not had it so I don't really know what it's like not to: nondifference and biographical disruption among children and young people with cystic fibrosis.

机译：我从未没有过它，所以我真的不知道那是什么感觉：囊性纤维化的儿童和年轻人之间的无差异和传记障碍。

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摘要

The relevance of biographical disruption and loss of self for children and young people is unclear, particularly in cases of congenital illness such as cystic fibrosis, where no prior period of wellness, stability, or perceived normality might exist. We explored the meaning, importance, and forms of maintenance of ideas of normality among 32 children and young people with cystic fibrosis. We examine the ways in which normalcy is produced, maintained, and threatened, and discuss the implications for the applicability and relevance of these traditional sociological concepts. Analysis of children's and young people's accounts resulted in a conceptualization of four forms of normalcy based on personal and social definitions and audiences. Biographical disruption appeared relevant but in a more nuanced form than its usual conceptualization when applied to adult populations. Maintaining normality within the family resulted in continual biographical revision in anticipation of future illness trajectory and life course.
机译：对于儿童和年轻人，传记式的破坏和自我丧失的相关性尚不清楚，尤其是在诸如囊性纤维化之类的先天性疾病的病例中，以前可能没有健康，稳定或感觉正常的时期。我们探讨了32名囊性纤维化儿童和年轻人中正常观念的意义，重要性和维持形式。我们研究了常态产生，维持和威胁的方式，并讨论了这些传统社会学概念对适用性和相关性的影响。对儿童和青少年账户的分析导致了基于个人和社会定义以及受众的四种形式的常态的概念化。自传扰动似乎适用于成年人，但比通常的概念化更为细微。维持家庭内的正常状态导致对传记的不断修订，以期预期未来的疾病轨迹和生活历程。

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