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首页> 外文期刊>Patient Preference and Adherence >More than what the eye can see: the emotional journey and experience of powerlessness of integrated care service users and their carers
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More than what the eye can see: the emotional journey and experience of powerlessness of integrated care service users and their carers

机译：超越眼睛所能看到的：综合护理服务用户及其护理人员的情感之旅和无能为力的经历

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Purpose: This article presents the emotional journey and experience of powerlessness of integrated care service users and carers.? Materials and methods: The experiences of seven integrated care service users and carers affected by complex conditions in a London borough were captured as video stories. The integrated care service coordinated a system of health and social care: primary care, community matrons, social workers, and the voluntary sector. The service was designed to respond to identified cases of high-risk individuals with long-term, multiple, and age-related conditions needing preventive interventions. The video stories were analyzed by researchers in collaboration with service users using a visual thematic qualitative approach. This report is part of an independent analysis of the integrated care service evaluation that used the experience-based codesign model.? Results: The findings are presented in the respective contexts of people with complex conditions and their carers. The overwhelming feelings and emotions of both were loss of control and power throughout their emotional journey, with family carers adopting a protective attitude toward the patients. Their experience of powerlessness was variable throughout their emotional journey. They were affected more strongly when in need of extra help and support and while they were undergoing the process of receiving extra services. When they were receiving help and support outside and within hospitals, some participants were empowered, gaining skills and knowledge by being provided with the mechanisms to cope with their condition at present and in the future.? Conclusion: Feelings of powerlessness were very common among integrated care service users and their carers. Powerless/empowerment has been poorly investigated to date. Visual methods and collaborative visual analysis with service users have proved to be powerful methods too, but have been rarely reported.
机译：目的：本文介绍了综合护理服务用户和护理人员无能为力的情感历程和经历。资料和方法：捕获了伦敦自治市中受复杂条件影响的七个综合护理服务用户和护理人员的经验，作为视频故事。综合护理服务协调了卫生和社会护理系统：初级保健，社区护士，社会工作者和志愿部门。该服务旨在对已确定的具有长期，多重和与年龄有关的状况的高风险个体做出反应，需要采取预防性干预措施。研究人员与服务用户合作，使用视觉主题定性方法对视频故事进行了分析。该报告是对使用基于经验的代码签名模型的综合护理服务评估进行独立分析的一部分。结果：研究结果是在条件复杂的人及其照顾者的各自背景下提出的。两者的压倒性情感和情感是他们整个情感旅程中失去控制和力量的原因，家庭护理人员对患者采取保护性态度。他们无能为力的经历在他们整个情感旅程中都是变化的。在需要额外帮助和支持时以及在接受额外服务的过程中，他们受到的影响更大。当他们在医院内外获得帮助时，他们被赋予了能力，通过提供应对当前和未来状况的机制来获得技能和知识。结论：无助感在综合护理服务使用者及其护理人员中非常普遍。迄今为止，对无能为力/授权的调查很少。可视化方法和与服务用户的协作式可视化分析也被证明是功能强大的方法，但鲜有报道。

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