近亲在获取相关信息和参与机会方面面临的长期挑战。
Next of kin's protracted challenges with access to relevant information and involvement opportunities.
作者信息
Strøm Anita, Dreyer Anne
机构信息
Faculty of Health, VID Specialized University, Oslo, Norway,
Department of Health Sciences in Ålesund, Faculty of Medicine and Health Sciences, Norwegian University of Science and Technology, Ålesund, Norway.
出版信息
J Multidiscip Healthc. 2018 Dec 18;12:1-8. doi: 10.2147/JMDH.S183946. eCollection 2019.
BACKGROUND
Next of kin are considered a resource for both the patient and the health service. Need for information varies with severity and duration of health changes. A clear requirement is about what to expect upon homecoming, and what supportive services are available. The picture of relatives' access to involvement and information is still somewhat unclear.
OBJECTIVE
To investigate what information, knowledge, and involvement next of kin considered important for managing their caring role and collaboration with their close relatives who experienced events that led to chronic illness.
DESIGN SETTING AND METHODS
A qualitative exploratory design. Seventeen informants were recruited through various courses offered to relatives. Data were collected in 2017 from individual interviews, analyzed in an interpretative tradition, and involved qualitative content analysis.
RESULTS
The results reflect a long intervening period in between the activating incident and a clarification of the situation. This period was characterized by unpreparedness for duration of anxiety and amount of energy involved in balancing the relationship. Further, the interviewees saw retrospectively that information about disease and treatment was available, but they had to find such resources themselves. Information about how to handle the situation was almost absent. Ultimately, they were disappointed over not being involved.
CONCLUSION
Previously provided prospective information about the embedded anxiety in the situation and consequences for relationships, involvement in patients' services, and better communication about existing services seem to be significant. Health care professionals, especially in outpatient care, may improve their services by debating how they can implement family-oriented care in personalized treatment as usual. Focus on prospective information, early involvement, and relevant information about existing resources may empower relatives and relieve the experience of care burden.
背景
近亲被视为患者和医疗服务的一种资源。对信息的需求因健康状况变化的严重程度和持续时间而异。一个明确的需求是关于回家后会发生什么，以及有哪些支持性服务。亲属获取参与和信息的情况仍有些不明确。
目的
调查近亲认为哪些信息、知识和参与对于管理他们的照顾角色以及与经历导致慢性病事件的近亲合作很重要。
设计、背景和方法：定性探索性设计。通过为亲属提供的各种课程招募了17名受访者。2017年通过个人访谈收集数据，采用解释性传统进行分析，并进行定性内容分析。
结果
结果反映了触发事件与情况澄清之间有很长的干预期。这一时期的特点是对焦虑的持续时间以及平衡关系所需的精力毫无准备。此外，受访者回顾发现有关疾病和治疗的信息是可以获取的，但他们必须自己去寻找这些资源。关于如何应对这种情况的信息几乎没有。最终，他们对未被纳入感到失望。
结论
之前提供关于这种情况中内在焦虑及其对关系的影响、参与患者服务以及更好地沟通现有服务的前瞻性信息似乎很重要。医疗保健专业人员，尤其是门诊护理人员，可以通过讨论如何在常规个性化治疗中实施以家庭为导向的护理来改善他们的服务。关注前瞻性信息、早期参与以及有关现有资源的相关信息可能会增强亲属的能力并减轻护理负担的感受。
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