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首页> 外文期刊>International Journal of Integrated Care >Informal work and formal plans: articulating the active role of patients in cancer trajectories
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Informal work and formal plans: articulating the active role of patients in cancer trajectories

机译：非正式工作和正式计划：阐明患者在癌症发展轨迹中的积极作用

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Introduction: Formal pathways models outline that patients should receive information in order to experience a coherent journey but do not describe an active role for patients or their relatives. The aim of this is paper is to articulate and discuss the active role of patients during their cancer trajectories. Methods and theory : An in-depth case study of patient trajectories at a Danish hospital and surrounding municipality using individual interviews with patients. Theory about trajectory and work by Strauss was included. Results: Patients continuously took initiatives to organize their treatment and care. They initiated processes in the trajectories, and acquired information, which they used to form their trajectories. Patients presented problems to the healthcare professionals in order to get proper help when needed. Discussion: Work done by patients was invisible and not perceived as work. The patients' requests were not sufficiently supported in the professional organisation of work or formal planning. Patients' insertion and use of information in their trajectories challenged professional views and working processes. And the design of the formal pathway models limits the patients′ active participation. When looking at integrated care from the perspective of patients, the development of a more holistic and personalized approach is needed. Introduction: Formal pathway models outline that patients should receive information in order to experience a coherent journey but do not describe an active role for patients or their relatives. The aim of this is paper is to articulate and discuss the active role of patients during their cancer trajectories. Methods and theory: An in-depth case study of patient trajectories at a Danish hospital and surrounding municipality using individual interviews with patients. Theory about trajectory and work by Strauss was included. Results: Patients continuously took initiatives to organize their treatment and care. They initiated processes in the trajectories, and acquired information, which they used to form their trajectories. Patients presented problems to the healthcare professionals in order to get proper help when needed. Discussion: Work done by patients was invisible and not perceived as work. The patients’ requests were not sufficiently supported in the professional organisation of work or formal planning. Patients’ insertion and use of information in their trajectories challenged professional views and working processes. And t he design of the formal pathway models limits the patients′ active participation. W hen looking at integrated care from the perspective of patients, the development of a more holistic and personalized approach is needed. Introduction: Formal pathways models outline that patients should receive information in order to experience a coherent journey but do not describe an active role for patients or their relatives. The aim of this is paper is to articulate and discuss the active role of patients during their cancer trajectories. Methods and theory : An in-depth case study of patient trajectories at a Danish hospital and surrounding municipality using individual interviews with patients. Theory about trajectory and work by Strauss was included. Results: Patients continuously took initiatives to organize their treatment and care. They initiated processes in the trajectories, and acquired information, which they used to form their trajectories. Patients presented problems to the healthcare professionals in order to get proper help when needed. Discussion: Work done by patients was invisible and not perceived as work. The patients' requests were not sufficiently supported in the professional organisation of work or formal planning. Patients' insertion and use of information in their trajectories challenged professional views and working processes. And the design of the formal pathway models limits the patients′ active participation. When looking at integrated care from the perspective of patients, the development of a more holistic and personalized approach is needed.
机译：简介：正式途径模型概述了患者应该接受信息以经历连贯的旅程，但不能描述患者或其亲属的积极作用。本文的目的是阐明和讨论患者在其癌​​症轨迹中的积极作用。方法和理论：通过对患者的个人访谈，对丹麦医院及周边城市的患者轨迹进行了深入的案例研究。包括了施特劳斯关于轨迹和工作的理论。结果：患者不断采取主动措施来组织治疗和护理。他们启动了轨迹中的过程，并获取了用于形成轨迹的信息。患者向医疗保健专业人员提出了问题，以便在需要时获得适当的帮助。讨论：由患者完成的工作是看不见的，而不是被视为工作。专业工作组织或正式计划未充分支持患者的要求。患者在其轨迹中插入和使用信息对专业观点和工作流程提出了挑战。正式路径模型的设计限制了患者的积极参与。从患者的角度看综合护理时，需要开发一种更全面，更个性化的方法。简介：正式的路径模型概述了患者应该获得信息以经历连贯的旅程，但并未描述患者或其亲属的积极角色。本文的目的是阐明和讨论患者在其癌​​症轨迹中的积极作用。方法和理论：通过对患者的个人访谈，对丹麦医院及周边城市的患者轨迹进行了深入的案例研究。包括了施特劳斯关于轨迹和工作的理论。结果：患者不断采取主动措施来组织治疗和护理。他们启动了轨迹中的过程，并获取了用于形成轨迹的信息。患者向医疗保健专业人员提出了问题，以便在需要时获得适当的帮助。讨论：由患者完成的工作是看不见的，而不是被视为工作。专业工作组织或正式计划未充分支持患者的要求。患者在其轨迹中插入和使用信息对专业观点和工作流程提出了挑战。正式途径模型的设计限制了患者的积极参与。当从患者的角度看待综合护理时，需要开发一种更加整体和个性化的方法。简介：正式途径模型概述了患者应该接受信息以经历连贯的旅程，但不能描述患者或其亲属的积极作用。本文的目的是阐明和讨论患者在其癌​​症轨迹中的积极作用。方法和理论：通过对患者的个人访谈，对丹麦医院及周边城市的患者轨迹进行了深入的案例研究。包括了施特劳斯关于轨迹和工作的理论。结果：患者不断采取主动措施来组织治疗和护理。他们启动了轨迹中的过程，并获取了用于形成轨迹的信息。患者向医疗保健专业人员提出了问题，以便在需要时获得适当的帮助。讨论：由患者完成的工作是看不见的，而不是被视为工作。专业工作组织或正式计划未充分支持患者的要求。患者在其轨迹中插入和使用信息对专业观点和工作流程提出了挑战。正式路径模型的设计限制了患者的积极参与。从患者的角度看待综合护理时，需要开发一种更加整体和个性化的方法。

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