亨廷顿病门诊患者与病例管理的经验:一种定性研究
Cindy Kruijthof1,2,3,4,5, Marike E de Boer1,2,3,4,5, Anouk M van Loon1,2,3,4,5
1Cindy Kruijthof, MSW, is a registered nurse and an experienced case manager for people with Huntington's disease for 7 years. In 2022, she obtained her Master's degree in Social Work. She is affiliated with Atlant, Huntington Centre of Expertise, Apeldoorn, the Netherlands.
Professional case management
|November 20, 2023
概括
亨廷顿症候群 亨廷顿症候群
科学领域:
- 神经学 神经学
- 医疗保健管理的管理
背景情况:
- 亨廷顿病 (HD) 需要全面的护理,以保持患者的福祉,并防止住院治疗.
- 近十年来,荷兰已经建立了HD患者的病例管理.
- 有关HD患者对病例管理对其生活质量影响的看法存在重大知识差距.
研究的目的:
- 探索出院亨廷顿病患者关于病例管理人员提供的护理,指导和支持的经验和信仰.
- 确定病例管理的关键方面,这些方面有助于HD患者的生活质量.
- 通过以患者为中心的洞察力,为HD护理提供国际改进提供信息.
主要方法:
- 定性研究侧重于门诊护理设置.
- 探索患者与亨廷顿病 (CMHD) 病例经理的经验.
主要成果:
- 门诊HD患者高度重视他们的病例经理,认为他们是有承诺,同情和可靠的.
- 主要职业角色的CMHD包括协调,作为一个中心的联系点,专业知识和支持.
- 通过帮助应对衰退和监测家庭情况,扩展到家庭成员,CMHD支持对生活质量产生积极影响.
结论:
- 亨廷顿病病例管理人员 (CMHD) 的承诺,专业知识和可信度对于患者的福祉至关重要.
- 作为一个中央支持系统,CMHDs起着至关重要的作用,类似于"网络中心的蜘蛛".
- 了解患者对CMHD的看法对于提高全球亨廷顿病护理质量至关重要.
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