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首页> 外文期刊>Sociology of health & illness >'One wants to know what a chromosome is': the internet as a coping resource when adjusting to life parenting a child with a rare genetic disorder.
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'One wants to know what a chromosome is': the internet as a coping resource when adjusting to life parenting a child with a rare genetic disorder.

机译：“一个人想知道一条染色体是什么”：在为有罕见遗传病的孩子育儿以适应生活时，互联网作为应对资源。

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摘要

The internet has democratised access to health and diagnostic information, enabling patients to mobilise social support from peers and advocate their interests in encounters with medical personnel. Research has shown that these possibilities are particularly important for patients and caregivers confronting a rare medical condition. However, little research has focused on how the act of searching for and accumulating information via the internet can be important for coping emotionally with a situation characterised by uncertain prospects and inadequate information from health personnel. This paper explores the experiences of 10 Norwegian parents whose children have different rare genetic disorders and who used the internet as a resource. The analysis draws on the theoretical framework of the medical sociologist Aaron Antonovsky, who emphasises people's inherent ability to manage extremely stressful life experiences. Analysing the process of adjusting to and coping with life parenting a child suffering from a rare genetic disorder, this study shows that becoming knowledgeable about a child's condition is essential for gradually comprehending and managing a situation that initially seems unmanageable and distressful. It also suggests that as parents adjust, so do the frequency and purpose of their internet searches.
机译：互联网使获取健康和诊断信息的方法民主化，使患者能够动员同龄人的社会支持，并在与医务人员相遇时倡导自己的兴趣。研究表明，这些可能性对于面临罕见疾病的患者和护理人员特别重要。但是，很少有研究集中在通过互联网搜索和积累信息的行为对于在情感上应对前景不确定和卫生人员信息不足的情况如何发挥重要作用。本文探讨了10个挪威父母的经历，他们的孩子有不同的罕见遗传疾病，他们利用互联网作为资源。该分析借鉴了医学社会学家亚伦·安东诺夫斯基（Aaron Antonovsky）的理论框架，他强调了人们应对极端压力的生活经历的内在能力。通过分析适应和应对养育患有罕见遗传病的孩子的生活的过程，这项研究表明，了解孩子的状况对于逐步理解和管理最初似乎难以控制和困扰的情况至关重要。它还表明，随着父母的调整，他们上网搜索的频率和目的也随之调整。

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