Parenting a child with a chronic medical condition
Parenting a child with a chronic medical condition
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DOI：
10.5014/ajot.58.5.551
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发表时间：
2004-09-01
影响因子：
2.9
通讯作者：
Case-Smith, J
中科院分区：
文献类型：
--
作者：
Case-Smith, J
目的。患有慢性疾病和相关残疾儿童的父母承担着与典型儿童不同的重大照顾责任。这项民族志研究考察了父母如何管理这些照顾需求，他们如何维持自己的社会生活，以及他们如何形成自我认同。研究生们采访了8位患有慢性疾病和残疾儿童的父母，并在6个月的时间里与他们一起参加了60小时的活动。对访谈记录、学生的现场笔记和日记进行分析，找出与护理、社会活动和自我认同相关的主题。父母们觉得他们“总是需要和孩子在一起”，大多数人已经改变了他们的职业规划，把更多的时间花在照顾孩子上。家长们还对为孩子做出艰难的医疗和教育决定感到焦虑。家庭之外的活动需要大量的计划和准备，维持社会生活被认为是具有挑战性的，因为朋友和亲戚并不总是理解家庭活动的局限性。尽管父母们表达了与应对照顾负担有关的压力，但他们认为有一个患有慢性疾病的孩子是一种积极的经历，它给他们的家庭带来了凝聚力。父母们解释说，他们和孩子们在一起的经历帮助他们欣赏生活，对个体差异更加敏感和宽容。这些父母已经成为他们的孩子和其他有类似需求的孩子的坚定拥护者。
PURPOSE. Parents of children with chronic medical conditions and associated disabilities have substantial caregiving responsibilities different from those of typical children. This ethnographic study examined how parents manage these caregiving demands, how they maintain their social lives, and how they form their self identities.METHOD. Graduate students interviewed eight parents of children with chronic medical conditions and disabilities and participated in 60 hours of activities with them over a 6-month time period. The interview transcripts, students' field notes, and journals were analyzed for themes that related to caregiving, social activities, and self-identity.RESULTS. Parents felt that they "always needed to be with their child," and most had changed their career plans to devote more time to caregiving. Parents also expressed anxiety about making difficult medical and educational decisions for their children. Activities outside the home required extensive planning and preparation and maintaining a social life was perceived as challenging because friends and relatives did not always understand the families' limitations in activity.CONCLUSIONS. Although the parents expressed stress related to coping with the caregiving load, they viewed having a child with chronic medical conditions as a positive experience that brought cohesion to their family. The parents explained that their experiences with their children helped them to appreciate life and develop more sensitivity to and tolerance of individual differences. The parents had become strong advocates for their children and other children with similar needs.