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癌症患者及其非正式照护者因进食能力下降而导致的心理社会后果:一项定性研究。

Psychosocial consequences of a reduced ability to eat for patients with cancer and their informal caregivers: A qualitative study.

机构信息

Netherlands Comprehensive Cancer Organisation, Post Office Box 19079, 3501 DB, Utrecht, the Netherlands.

Netherlands Comprehensive Cancer Organisation, Post Office Box 19079, 3501 DB, Utrecht, the Netherlands; Netherlands Association for Palliative Care (PZNL), Post Office Box 19079, 3501 DB, Utrecht, the Netherlands.

出版信息

Eur J Oncol Nurs. 2020 Dec;49:101838. doi: 10.1016/j.ejon.2020.101838. Epub 2020 Sep 18.

Abstract

PURPOSE

Patients with cancer often experience a reduced ability to eat. This can have psychosocial consequences for both patients and informal caregivers. Current literature is mainly focused on patients with end stage advanced disease and cancer cachexia. This qualitative study provides new insights in the field of Psycho-Oncology by exploring psychosocial consequences of a reduced ability to eat in patients in different stages of the disease and in recovery and remission.

METHOD

Semi-structured interviews (n = 26) were conducted in patients with head and neck, lung cancer or lymphoma. Patients' informal caregivers participated in 12 interviews. All interviews were recorded, transcribed and thematically analysed using Atlas.ti.

RESULTS

Four themes emerged related to psychosocial consequences of a reduced ability to eat: struggle with eating, high sense of responsibility, misunderstanding by social environment and social consequences. Emotions mentioned by patients and informal caregivers were: anger, anxiety, disappointment, grief and sadness, guilt, powerlessness and shame. The theme social consequences was related to: less pleasure experienced and the social strategies: adjust, search for alternatives and avoid.

CONCLUSION

Patients with cancer and their informal caregivers experience a wide range of psychosocial consequences of reduced ability to eat during all phases of the disease trajectory and in recovery and remission. It is important to recognise and acknowledge this struggle to optimise future care.

摘要

目的

癌症患者常常会出现进食能力下降的情况。这会对患者和非正式照护者产生心理社会方面的影响。目前的文献主要集中在晚期进展性疾病和癌症恶病质的患者上。本定性研究通过探索不同疾病阶段、康复和缓解期患者进食能力下降的心理社会后果,为心理肿瘤学领域提供了新的见解。

方法

对头颈癌、肺癌或淋巴瘤患者进行了半结构化访谈(n=26)。患者的非正式照护者参与了 12 次访谈。所有访谈均进行了录音、转录,并使用 Atlas.ti 进行主题分析。

结果

出现了四个与进食能力下降的心理社会后果相关的主题:进食困难、高度责任感、社会环境的误解和社会后果。患者和非正式照护者提到的情绪包括:愤怒、焦虑、失望、悲伤、内疚、无力感和羞耻感。主题为“社会后果”与“较少的愉悦体验”和“社会策略:调整、寻找替代方案和避免”相关。

结论

癌症患者及其非正式照护者在疾病轨迹的所有阶段以及康复和缓解期都经历了进食能力下降带来的广泛的心理社会后果。认识到并承认这种困境对于优化未来的护理非常重要。

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