ABSTRACT

Chagas disease is the neglected tropical disease of greatest public health impact in the United States, where it affects over 300,000 people. Diverse barriers limit healthcare access for affected people; fewer than 1% have obtained testing or treatment. We interviewed 50 people with Chagas disease in Los Angeles, California, and administered a cultural consensus analysis questionnaire. Participants were asked about their experiences and perceptions of Chagas disease, access to healthcare, and strategies for coping with the disease. In participants’ narratives, the physical and emotional impacts of the disease were closely interwoven. Participant explanatory models highlight difficulties in accessing care, despite a desire for biomedical treatment. Obtaining testing and treatment for Chagas disease poses substantial challenges for US patients.

摘要

恰加斯病是美国被忽视的对公共卫生影响最大的热带疾病，它影响了超过 300,000 人。各种障碍限制了受影响人群获得医疗保健的机会；不到 1% 的人获得了检测或治疗。我们在加利福尼亚州洛杉矶采访了 50 名南美锥虫病患者，并进行了文化共识分析问卷调查。参与者被问及他们对恰加斯病的经历和看法、获得医疗保健的机会以及应对这种疾病的策略。在参与者的叙述中，疾病对身体和情感的影响是紧密交织在一起的。尽管渴望生物医学治疗，但参与者解释模型强调了获得护理的困难。获得对恰加斯病的检测和治疗对美国患者构成了巨大挑战。