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“他们耐心倾听我们的诉说……这让我感觉不同”:孟加拉国晚期癌症患者及其家属的姑息治疗需求与护理经历

'They patiently heard what we had to say... this felt different to me': the palliative care needs and care experiences of advanced cancer patients and their families in Bangladesh.

作者信息

Dehghan Roghieh, Ramakrishnan Jairam, Uddin-Ahmed Nezam, Harding Richard

出版信息

BMJ Support Palliat Care. 2012 Jun;2(2):145-9. doi: 10.1136/bmjspcare-2011-000143.

Abstract

BACKGROUND

In 2008, 70% of cancer deaths occurred in low- and middle-income countries. This study aimed to describe the needs and experiences of patients and families who received palliative care in Bangladesh, and those of the providing clinicians, in order to inform fledgling service development.

METHODS

Patients, family members and specialist palliative care physicians (n=20) participated in a cross-sectional semistructured qualitative study. Following peer review of coding units, relational codes were established and a resulting frame constructed.

RESULTS

The data fit well within the existing domains of palliative care, as respondents described the family-wide distress and impact of the disease, psychological, physical and social problems. However, the contextual experience of cancer in this setting revealed particular challenges, as respondents described anger, helplessness and mistrust towards existing (non-palliative) healthcare. Poor patient-doctor communication and unmet need for information contributed greatly to these poor experiences. By contrast, experience of palliative care was explained in radically different terms, with a clear shift in the nature of the interaction and resulting care, to bring effective communication and relief from suffering.

CONCLUSION

To alleviate the distress to cancer patients and their families, it is essential for oncologists to receive adequate training in palliative care, especially in communication, holistic assessment and information giving. To meet the massive challenge in a country like Bangladesh, palliative care should be mainstreamed into the existing healthcare system for a feasible and sustainable public health approach.

摘要

背景

2008年,70%的癌症死亡发生在低收入和中等收入国家。本研究旨在描述在孟加拉国接受姑息治疗的患者及其家庭以及提供治疗的临床医生的需求和经历,以便为初步的服务发展提供信息。

方法

患者、家庭成员和专业姑息治疗医生(共20人)参与了一项横断面半结构化定性研究。在对编码单元进行同行评审后,建立了关系代码并构建了一个框架。

结果

数据与姑息治疗的现有领域非常契合,因为受访者描述了疾病对整个家庭的困扰和影响、心理、身体和社会问题。然而,在这种情况下癌症的背景经历显示出特殊的挑战,因为受访者描述了对现有(非姑息)医疗保健的愤怒、无助和不信任。医患沟通不畅和信息需求未得到满足极大地导致了这些不良经历。相比之下,姑息治疗的经历则有截然不同的解释,互动性质和由此产生的护理有明显转变,带来了有效的沟通和痛苦缓解。

结论

为减轻癌症患者及其家庭的痛苦,肿瘤学家必须接受充分的姑息治疗培训,尤其是在沟通、整体评估和信息提供方面。为应对像孟加拉国这样的国家面临的巨大挑战,应将姑息治疗纳入现有的医疗保健系统,以采取可行和可持续的公共卫生方法。

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