Center of Tropical Medicine and Travel Medicine, Department of Infectious Diseases, Division of Internal Medicine, Academic Medical Center, University of Amsterdam, Amsterdam, the Netherlands; Faculty of Social and Behavioural Science, Department of Sociology and Anthropology, University of Amsterdam, Amsterdam, the Netherlands.
Faculty of Social and Behavioural Science, Department of Sociology and Anthropology, University of Amsterdam, Amsterdam, the Netherlands.
Soc Sci Med. 2018 Jul;209:145-151. doi: 10.1016/j.socscimed.2018.05.034. Epub 2018 May 25.
Khayelitsha, one of the biggest and poorest townships in South Africa, has a well-resourced tuberculosis (TB) programme with an interdisciplinary approach addressing the medical, social, and economic forces impacting TB care. Nevertheless, the area remains burdened with one of the highest TB rates in the world. Using a resilience-based approach, we conducted a critical ethnographic study to develop deeper insights into the complexities of patients' experiences with TB and care. Between October 2014 and March 2015, we approached 30 TB patients, 10 health-care workers, 10 pastors, and 10 traditional healers, using participant observation, in-depth interviews, and focus group discussions. In addition, seven key informants were filmed on a daily basis by the lead researcher. The work reported here (both text and short videos) illustrates the various manifestations of resilience that patients demonstrated and how these impacted on decisions involving treatment seeking and adherence. We have synthesized the data into the following inter-related themes: TB aetiologies and treatment; the embodied experience of TB treatment; alcohol consumption; financial constraints; and support and stigma. The findings from this research highlight patients' strategies for adapting to adversities, such as pausing TB treatment when lacking food to avoid becoming psychotic, consuming alcohol to better cope, obtaining social grants, and avoiding stigmatizing attitudes. Some manifestations of resilience may interact and, inadvertently, undermine TB patients' health. Other aspects of resilience, such as strong community ties, elicited long-term health benefits. TB programs would benefit from a resilience-building approach that builds on pre-existing strengths and vulnerabilities of TB patients and their communities. With the use of short videos, we provided patients with an alternative path for expressing their experiences, which we hope will support synergies between patients, researchers, and policy-makers for improved TB programmes.
开普敦，南非最大和最贫穷的城镇之一，拥有资源丰富的结核病（TB）计划，采用跨学科方法解决影响 TB 护理的医疗、社会和经济因素。尽管如此，该地区仍然承受着世界上最高的 TB 发病率之一。我们使用基于恢复力的方法进行了批判性民族志研究，以更深入地了解患者 TB 经历和护理的复杂性。2014 年 10 月至 2015 年 3 月期间，我们采用参与者观察、深入访谈和焦点小组讨论的方式，接触了 30 名 TB 患者、10 名卫生保健工作者、10 名牧师和 10 名传统治疗师。此外，由首席研究员对 7 名关键知情人进行了日常拍摄。这里报告的工作（包括文本和短视频）说明了患者表现出的各种恢复力表现形式，以及这些表现形式如何影响寻求治疗和坚持治疗的决策。我们将数据综合为以下相互关联的主题：结核病病因和治疗；结核病治疗的身体体验；饮酒；经济限制；支持和耻辱。这项研究的结果强调了患者适应逆境的策略，例如在缺乏食物时暂停 TB 治疗以避免精神错乱，饮酒以更好地应对，获得社会补助，避免歧视态度。一些恢复力表现形式可能相互作用，并在无意中损害 TB 患者的健康。其他方面的恢复力，如强大的社区关系，带来了长期的健康益处。TB 项目将受益于建立在 TB 患者及其社区现有优势和脆弱性基础上的恢复力建设方法。我们使用短视频为患者提供了一种表达自己经历的替代途径，我们希望这将支持患者、研究人员和政策制定者之间的协同作用，以改善 TB 计划。
