Caregiving by teens for family members with Huntington disease.
Caregiving by teens for family members with Huntington disease.
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DOI：
10.1177/1074840709337126
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发表时间：
2009-08
影响因子：
3.1
通讯作者：
Klimek ML
中科院分区：
文献类型：
--
作者：
Williams JK;Ayres L;Specht J;Sparbel K;Klimek ML
本报告的目的是描述青少年对患有亨廷顿病（HD）的家庭成员的照顾。2002年至2005年，32名来自美国和加拿大HD家庭的青少年参加了一项研究，以确定关注的问题和管理关注的策略。一个意想不到的发现是24例（77%）描述了护理活动。对护理陈述的描述性分析确定了任务和责任、主观负担、个人风险背景下的护理和决策责任等主题。青少年积极参与了几乎所有方面的护理，除了联系卫生保健提供者和参加医生预约。一些人描述了情绪困扰，许多人在知道他们有可能患上HD的情况下提供护理。青少年认识到做决定的必要性，但缺乏做出这些决定的权力。研究结果可能与其他努力满足照顾者和学生角色以及发展任务的青少年有关。
The purpose of this report is to describe caregiving by teens for family members with Huntington disease (HD). Thirty-two teens in HD families in the United States and Canada participated in focus groups from 2002 to 2005 in a study to identify concerns and strategies to manage concerns. An unexpected finding was 24 (77%) described caregiving activities. Descriptive analysis of caregiving statements identified themes of Tasks and Responsibilities, Subjective Burden, Caregiving in Context of Personal Risk for HD, and Decisional Responsibility. Teens took an active part in nearly all aspects of care with the exception of contacting health care providers and attending doctors’ appointments. Some described emotional distress, and many provided care knowing they had the potential to develop HD. Teens recognized the need for decisions but lacked the authority to make these decisions. Findings may be relevant for other teens who strive to meet caregiver and student roles and developmental tasks.