成年人的动态和多样化的经验与手臂出生损伤:一个集体案例研究
Jenny M Dorich1, Jordyn Whiting2, Vicki L Plano Clark3
1Departments of Orthopaedic Surgery and Allied Health Sciences, Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, OH, USA.
概括
臂出生损伤 (BPBI) 影响成年人的健康相关生活质量 (HRQoL) 跨生物心理社会维度和整个寿命. 终身,个性化护理对于管理这种慢性疾病至关重要.
科学领域:
- 医疗康复 医疗康复
- 生活质量研究 研究 生命质量研究
- 关于残疾人的研究.
背景情况:
- 臂出生损伤 (BPBI) 是一种复杂的疾病,从出生开始就影响个人.
- 了解BPBI成年人的长期健康相关生活质量 (HRQoL) 对于有效的护理至关重要.
- 功能,残疾和健康的国际分类 (ICF) 为分析残疾和健康提供了一个框架.
研究的目的:
- 探索受臂出生损伤 (BPBI) 影响的成人的健康相关生活质量 (HRQoL) 经验.
- 利用国际功能,残疾和健康分类 (ICF) 的理论框架来理解这些经验.
- 确定关键主题并开发BPBI对整个生命周期的HRQoL影响的概念模型.
主要方法:
- 采用了定性集体案例研究设计.
- 从一项先前的调查研究中招募了12名参与者,使用最大变异抽样.
- 进行了一对一的半结构化采访,记录完整,并进行主题分析.
主要成果:
- 两个主要主题出现了:"经验的生物心理社会维度"和"终身和可变的经验".
- 生物心理社会主题强调了BPBI如何影响身体/情绪健康,身份,活动和社会环境.
- 终身主题强调BPBI是一种慢性,不断变化的疾病,HRQoL的维度随着时间的推移而扩大,资源收缩.
结论:
- BPBI显著影响个体的功能,并受到个人,社会和环境因素的影响.
- 调查结果强调了为受BPBI影响的个体提供终身,个性化的护理方法的必要性.
- 开发了一个概念模型,说明BPBI HRQoL的寿命轨迹,强调不断变化的需求和资源可用性.
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