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脊柱肌肉缩1型儿童的家长之间的悲伤经历
Christina M Mulé1, Abigail Riley2, Debra Lerner3
1Division of Developmental and Behavioral Pediatrics, Department of Pediatrics (C.M.M.), Golisano Children's Hospital, University of Rochester, Rochester, NY, USA; Division of Developmental and Behavioral Pediatrics, Department of Pediatrics (C.M.M.), Tufts Medical Center, Tufts University School of Medicine, Boston, MA, USA.
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概括
在孩子出生后,父母的悲伤.
科学领域:
- 儿科罕见病研究 儿科罕见病研究
- 悲伤和丧失的研究研究.
- 父母的心理健康和福祉.
背景情况:
- 父母的悲伤会影响健康和工作,但SMA Type 1的具体结果尚未得到充分研究.
- 脊柱肌缩 (SMA) 1型是一种严重的,渐进的神经肌肉疾病,导致儿童早期死亡.
- 了解失去了1型SMA儿童的父母所面临的独特挑战至关重要.
研究的目的:
- 质量地探索与健康相关的生活质量 (HRQOL),生产力和社会联系在父母丧失了SMA型1儿童的遗憾.
- 为了深入了解这些父母的生活经历.
- 为了确定影响父母在悲伤后调整的因素.
主要方法:
- 进行了半结构化的定性采访,对16名父母进行了采访,他们的孩子死于SMA1型.
- 采访采用主题分析进行了音频录制,转录和独立编码.
- 使用描述性统计学分析参与者特征.
主要成果:
- 一个患有SMA类型1的孩子的死亡对父母的前景,健康,人际关系和就业产生了深远的影响.
- 悲伤是从诊断到童年以及孩子去世后的经历.
- 社会支持,寻找意义和建立日常生活减轻了悲伤;孤立,不适应应对和遗憾加剧了悲伤.
结论:
- 这项研究详细介绍了SMA1型儿童丧生父母所经历的心理社会和功能后果.
- 调查结果可以为制定针对性的干预措施和为丧亲父母提供支持计划提供信息.
- 这项研究为对这一群体悲伤结果的纵向研究提供了基础.
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