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耐多药/广泛耐药结核病患者的经历和需求:印度中部中央邦萨哈里亚部落的一项定性研究。

Experiences and needs of patients with MDR/XDR-TB: a qualitative study among Saharia tribe in Madhya Pradesh, Central India.

机构信息

Division of Communicable Diseases, ICMR-National Institute of Research in Tribal Health, Jabalpur, Madhya Pradesh, India.

ICMR- National Institute of Medical Statistics, New Delhi, Delhi, India.

出版信息

BMJ Open. 2021 Aug 12;11(8):e044698. doi: 10.1136/bmjopen-2020-044698.

Abstract

BACKGROUND

Drug-resistant tuberculosis (DR-TB) continues to be a major public health threat posing a critical challenge to TB treatment and control worldwide. The present study was conducted among patients with DR-TB of the Saharia tribe residing in Madhya Pradesh state of Central India to document their experiences and needs, and to identify gaps for treatment adherence as this population is known to be poor because of migration and other factors.

METHODS

We conducted 16 in-depth interviews on purposively selected patients with DR-TB among the Saharia tribe using a predesigned open-ended in-depth interview guide, which included questions on domains like general physical health, diagnosis, treatment adherence, side-effects of drugs and experience related to the health facility. Out of these interviews, various subthemes were extracted. The obtained qualitative data were subjected to thematic analysis.

RESULTS

The study helped to understand the experiences and needs of the patients with DR-TB in various stages from diagnosis to treatment. Also, there was the impact of factors like lack of education and awareness, poor living conditions and lack of healthcare facilities on predominance of the disease in the community. Poor access to a healthcare facility, high pill burden and related side-effects, longer duration of treatment, financial burden, misbeliefs and misconceptions were prominent issues posing a challenge to treatment adherence. The narratives pointed out their struggle at every stage be it with diagnosis, treatment initiation or treatment adherence.

CONCLUSION

It is paramount to address the needs and experiences of patients with DR-TB to develop a patient-centric and context-specific approach conducive to the sociocultural set-up of tribal people. This will scale down the attrition rate of tribal patients while adhering to the complete treatment process and reducing the high burden of TB among the Saharia community. In addition, tribal patients should be counselled at regular intervals to increase their confidence in the treatment.

摘要

背景

耐药结核病(DR-TB)仍然是一个主要的公共卫生威胁,对全球结核病治疗和控制构成了重大挑战。本研究在印度中部中央邦居住的撒哈拉部落的 DR-TB 患者中进行,旨在记录他们的经历和需求,并确定治疗依从性的差距,因为众所周知,由于移民和其他因素,这一人群比较贫困。

方法

我们使用预先设计的开放式深度访谈指南,对撒哈拉部落中 DR-TB 患者进行了 16 次深入访谈,其中包括一般身体健康、诊断、治疗依从性、药物副作用以及与医疗机构相关的经验等方面的问题。从这些访谈中提取了各种子主题。获得的定性数据进行了主题分析。

结果

这项研究有助于了解从诊断到治疗各个阶段 DR-TB 患者的经历和需求。此外,缺乏教育和意识、恶劣的生活条件和缺乏医疗保健设施等因素对该社区疾病流行有影响。贫困的医疗保健设施获取渠道、高药丸负担和相关副作用、更长的治疗时间、经济负担、误解和误解是影响治疗依从性的突出问题。这些叙述指出了他们在每个阶段的挣扎,无论是在诊断、治疗开始还是治疗依从性方面。

结论

必须解决 DR-TB 患者的需求和经历,制定以患者为中心和具体情况的方法,有利于部落人民的社会文化环境。这将降低部落患者的淘汰率,同时坚持完成整个治疗过程,减少撒哈拉社区的结核病负担。此外,应定期为部落患者提供咨询,以增强他们对治疗的信心。

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