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“所以,当一名女性生病时,整个家庭结构都会受到影响,他们无能为力……” 印度社区关于乳腺癌女性的声音:一项定性焦点小组研究。

"So, when a woman becomes ill, the total structure of the family is affected, they can't do anything…" Voices from the community on women with breast cancer in India: a qualitative focus group study.

作者信息

Daniel Sunitha, Venkateswaran Chitra, Singh Charu, Hutchinson Ann, Johnson Miriam J

机构信息

General Hospital, Ernakulam, Kochi, India.

Wolfson Palliative Care Research Centre, University of Hull, Hull, HU6 7RX, UK.

出版信息

Support Care Cancer. 2022 Jan;30(1):951-963. doi: 10.1007/s00520-021-06475-4. Epub 2021 Aug 22.

DOI:10.1007/s00520-021-06475-4
PMID:34420101
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8636417/
Abstract

BACKGROUND

Psychological symptoms are common in women with breast cancer and profoundly affect their role in the family and wider community, varying across cultural backgrounds. Breast cancer is becoming the most common cancer among women in India. We aimed to understand the cultural context within which Indian women with breast cancer living in India, experience psychological concerns from the perspectives of healthcare professionals, volunteers and church members.

METHODS

Five focus groups were conducted in South India (clinicians (2 groups)) lay public (3 groups). A topic guide was explored: understanding of breast cancer, experiences of patients with regard to diagnosis and treatment and psychological impact. Groups were audio-recorded and verbatim transcribed. Lay groups were conducted in Malayalam with translation and back-translation. Transcripts were subjected to thematic analysis using "cultural task analysis" as a lens for analysis.

RESULTS

Forty-five (oncologists (5), nurses (10), church members (16) and community volunteers working in a palliative care unit (14) participated. Three major themes psychosocial issues related to diagnosis, psychosocial impact of cancer treatment and coping with diagnosis and treatment and nine subthemes emerged from the two groups. All described psychological impact on women with breast cancer including body image, change of family role and their need for support. Family and faith were recognised as the major framework providing key support but also significant stress. Clinicians were also concerned about financial implications and issues around early cancer detection. Laypeople and nurses also commented that poor communication and lack of empathy from doctors aggravated distress.

CONCLUSION

Clinical and lay communities were aware of the widespread psychological impact affecting women with breast cancer which are amplified by the patriarchal context within which they live, which extends into clinical practice. Family and faith provide a strong support structure and are a cause of distress, as core roles and expectations are challenged by this disease of womanhood.

摘要

背景

心理症状在乳腺癌女性患者中很常见,并深刻影响她们在家庭和更广泛社区中的角色,且因文化背景而异。乳腺癌正成为印度女性中最常见的癌症。我们旨在从医疗保健专业人员、志愿者和教会成员的角度,了解生活在印度的乳腺癌女性所处的文化背景,以及她们所经历的心理问题。

方法

在印度南部进行了五个焦点小组讨论(临床医生(2组))、普通民众(3组)。探讨了一个主题指南:对乳腺癌的理解、患者在诊断和治疗方面的经历以及心理影响。小组讨论进行了录音并逐字转录。普通民众小组讨论用马拉雅拉姆语进行,并进行了翻译和回译。使用“文化任务分析”作为分析视角,对转录文本进行了主题分析。

结果

45人参与(肿瘤学家(5人)、护士(10人)、教会成员(16人)和在姑息治疗病房工作的社区志愿者(14人))。从两组讨论中出现了三个主要主题:与诊断相关的心理社会问题、癌症治疗的心理社会影响以及应对诊断和治疗,以及九个子主题。所有人都描述了乳腺癌对女性的心理影响,包括身体形象、家庭角色的变化以及她们对支持的需求。家庭和信仰被认为是提供关键支持的主要框架,但也带来了巨大压力。临床医生还关注经济影响以及早期癌症检测方面的问题。普通民众和护士也表示,医生沟通不畅和缺乏同理心加剧了患者的痛苦。

结论

临床和普通社区都意识到乳腺癌对女性产生的广泛心理影响,而她们所处的父权制背景会加剧这种影响,这种影响甚至延伸到了临床实践中。家庭和信仰提供了强大的支持结构,但也是痛苦的根源,因为这种女性疾病挑战了核心角色和期望。

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