Médecins Sans Frontières, New Delhi, India.
All India Institute of Medical Sciences, Patna, India.
PLoS One. 2020 Feb 10;15(2):e0227911. doi: 10.1371/journal.pone.0227911. eCollection 2020.
Co-infection with Visceral Leishmaniasis (commonly known as Kala Azar, KA) and Human Immunodeficiency Virus (HIV) is increasingly being diagnosed among patients in Bihar. This qualitative study is the first assessment of self-reported quality of life among patients co-infected with KA-HIV in the Asian context.
We conducted semi-structured, in-depth interviews and adopted an inductive thematic analysis to generate evidence on the quality of life of patients co-infected with KA and HIV. Patients were purposively sampled until saturation was attained.
We found that patients highly valued income or livelihood potential and health as indicators of a good quality life, and routinely went into debt accessing care in the private setup. This was due to perceptions of poor quality of care in the government setup and a lack of knowledge regarding available government services at the district level. KA symptoms were often misdiagnosed in the private sector as seasonal fever, while care providers found it difficult to disentangle the clinical symptoms of KA and HIV; hence, patients presented late to district hospitals. Patients perceived a high level of stigma, largely due to their HIV status, and routinely reported that HIV had "destroyed" their life.
Inadequate social support and referral pathways that were not conducive to patient needs negatively impacted patients' quality of life. The dual burden of poverty interacting with the severity and chronicity of KA-HIV co-infection means financial support, increased community engagement, and collaborative decision making are crucial for co-infected patients. Increased provider awareness of co-infection and effective stigma-reduction interventions should be integrated to ensure that appropriate and effective access to care is possible for this vulnerable population. A sustainable long-term strategy requires a people-centered approach wherein the perceptions and life circumstances of patients are taken into account in the medical decision making process.
在比哈尔邦，越来越多的内脏利什曼病（俗称黑热病，KA）和人类免疫缺陷病毒（HIV）合并感染患者被诊断出来。本研究是在亚洲背景下首次评估 KA-HIV 合并感染患者的自我报告生活质量。
我们进行了半结构式深入访谈，并采用归纳主题分析来生成有关 KA 和 HIV 合并感染患者生活质量的证据。通过目的性抽样，直至达到饱和。
我们发现，患者非常重视收入或潜在生计以及健康作为生活质量的指标，并经常因在私立机构获得护理而负债累累。这是因为他们认为政府机构的护理质量差，并且对地区一级提供的政府服务缺乏了解。KA 症状在私营部门经常被误诊为季节性发热，而护理提供者发现难以区分 KA 和 HIV 的临床症状；因此，患者到地区医院就诊较晚。患者普遍感到很大的耻辱感，主要是因为他们的 HIV 状况，并且经常报告说 HIV“毁了”他们的生活。
社会支持不足和不便于患者需求的转诊途径对患者的生活质量产生了负面影响。贫穷的双重负担与 KA-HIV 合并感染的严重程度和慢性程度相互作用，意味着财务支持、增加社区参与度和协作决策对于合并感染患者至关重要。提高提供者对合并感染的认识和实施有效的减少耻辱感干预措施，应整合到确保这一脆弱人群能够获得适当和有效的护理中。一个可持续的长期战略需要以人为本的方法，在医疗决策过程中考虑患者的看法和生活环境。
