Charité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Medical Department, Division of Hematology and Oncology, Campus Benjamin Franklin, Berlin, Germany.
Charité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Institute of Medical Psychology, Campus Mitte, Berlin, Germany.
Support Care Cancer. 2018 Mar;26(3):921-931. doi: 10.1007/s00520-017-3911-5. Epub 2017 Oct 4.
Early integration of palliative care (EIPC) into oncology is beneficial for cancer patients and their caregivers. Best practice models of EIPC throughout the course of cancer treatment aim to support patients and caregivers in meeting their individual needs. So far, we know little about whether EIPC offers should be phase-specific or patient-centered. This study investigated patients' and caregivers' needs considering individual challenges, treatment preferences, and knowledge over the cancer trajectory.
Semi-structured qualitative interviews and pre-interview questionnaires were conducted with 11 cancer patients and 9 caregivers. A modified grounded theory approach was used to analyze the interview data applying thematic analysis and reflective principles by using MAXQDA.
Our data showed no clearly distinct pattern of illness-phase-specific needs of patients and caregivers. Support needs were dependent on the significance and interpretation of events by patients and caregivers. Mastering challenges was highly individual and influenced by personal and contextual factors. Our results showed that subjective theories of illness significantly influenced experience, information requirements, treatment preferences, and the feeling of patients and caregivers "to be in good hands." The physician-patient relationship was of central relevance and has a major gatekeeper function for EIPC. Access to the medical care system, resources, and information appeared to be based on chance.
For optimal EIPC, it is necessary to improve structural conditions such as more structured information about resources and procedures. Subjective theories of illness need to be continuously considered by practitioners in order to recognize the individual need for support.
早期姑息治疗（EIPC）融入肿瘤学对癌症患者及其护理人员有益。在癌症治疗过程中，EIPC 的最佳实践模式旨在满足患者和护理人员的个人需求。到目前为止，我们对 EIPC 提供的服务是否应该具有阶段性还是以患者为中心知之甚少。本研究调查了患者和护理人员的需求，考虑了个人挑战、治疗偏好和癌症病程中的知识。
对 11 名癌症患者和 9 名护理人员进行了半结构化定性访谈和预访谈问卷。采用改良的扎根理论方法，应用 MAXQDA 对访谈数据进行主题分析和反思性原则分析。
我们的数据没有显示出患者和护理人员在疾病阶段特定需求方面的明显差异模式。支持需求取决于患者和护理人员对事件的意义和解释。掌握挑战是高度个体化的，受到个人和环境因素的影响。我们的研究结果表明，主观疾病理论极大地影响了患者和护理人员的体验、信息需求、治疗偏好和“感觉良好”的感觉。医患关系至关重要，对 EIPC 具有主要的把关作用。获得医疗保健系统、资源和信息似乎是偶然的。
为了实现最佳的 EIPC，有必要改善结构条件，例如提供更多关于资源和程序的结构化信息。从业人员需要不断考虑主观疾病理论，以识别个人的支持需求。
