个体困难与资源——晚期肺癌患者及其亲属的质性分析
Individual difficulties and resources - a qualitative analysis in patients with advanced lung cancer and their relatives.
作者信息
Sparla Anika, Flach-Vorgang Sebastian, Villalobos Matthias, Krug Katja, Kamradt Martina, Coulibaly Kadiatou, Szecsenyi Joachim, Thomas Michael, Gusset-Bährer Sinikka, Ose Dominik
机构信息
Department of General Practice and Health Services Research, Heidelberg University Hospital.
Internistische Onkologie der Thoraxtumoren, Thoraxklinik im Universitätsklinikum Heidelberg, Translational Lung Research Center Heidelberg (TLRC-H), Member of the German Center for Lung Research, Heidelberg, Germany.
出版信息
Patient Prefer Adherence. 2016 Oct 3;10:2021-2029. doi: 10.2147/PPA.S110667. eCollection 2016.
PURPOSE
Lung cancer is a disease with a high percentage of patients diagnosed in an advanced stage. In a situation of palliative treatment, both patients and their relatives experience diverse types of distress and burden. Little research has been done to identify the individual difficulties and resources for patients with advanced lung cancer and their relatives. Especially, standardized questionnaire-based exploration may not assess the specific distressing issues that pertain to each individual on a personal level. The purpose of this qualitative study is to explore and compare individual difficulties and resources for lung cancer patients and their relatives within the palliative care context.
METHODS
Data were collected by qualitative interviews. A total of 18 participants, nine patients diagnosed with advanced lung cancer (International Classification of Diseases, tenth edition, diagnosis C-34, stage IV) starting or receiving palliative treatment and nine relatives, were interviewed. Data were interpreted through qualitative content analysis.
RESULTS
We identified four main categories of difficulties: communication and conflicts, home and everyday life, thinking about cancer, and treatment trajectory. In general, difficulties were related to interpersonal relationships as well as to impact of chemotherapy. Family, professional caregivers, and social life were significant resources and offered support to both patients and relatives.
CONCLUSION
Results suggest that patient and relative education could reduce difficulties in several areas. Patients seem to struggle with the fear of not having any perspective in therapy. Relatives seem to experience helplessness regarding their partner's deterioration and have to handle their own life and the care work simultaneously. The most important resource for both patients and relatives is their family. In addition, professional lung cancer nurses support relatives in an emotional and organizational way. Intense supportive care for relatives should be standardized.
目的
肺癌是一种很多患者在晚期才被诊断出来的疾病。在姑息治疗的情况下，患者及其亲属都会经历不同类型的痛苦和负担。很少有研究去识别晚期肺癌患者及其亲属的个人困难和资源。特别是，基于标准化问卷的探索可能无法评估与每个个体相关的具体困扰问题。这项定性研究的目的是在姑息治疗背景下探索和比较肺癌患者及其亲属的个人困难和资源。
方法
通过定性访谈收集数据。总共采访了18名参与者，其中9名被诊断为晚期肺癌（国际疾病分类第十版，诊断为C-34，IV期）且开始或正在接受姑息治疗的患者，以及9名亲属。通过定性内容分析对数据进行解读。
结果
我们确定了四大类困难：沟通与冲突、家庭与日常生活、对癌症的思考以及治疗过程。总体而言，困难与人际关系以及化疗的影响有关。家庭、专业护理人员和社交生活是重要的资源，为患者和亲属都提供了支持。
结论
结果表明，对患者和亲属的教育可以减少几个方面的困难。患者似乎在担心治疗中没有任何前景方面苦苦挣扎。亲属似乎对伴侣的病情恶化感到无助，并不得不同时处理自己的生活和护理工作。患者和亲属最重要的资源是他们的家庭。此外，专业的肺癌护士在情感和组织方面为亲属提供支持。对亲属的强化支持性护理应该标准化。
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