Medical School, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK.
Institute of Clinical Sciences College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK.
BMC Infect Dis. 2021 Mar 19;21(1):282. doi: 10.1186/s12879-021-05980-5.
Brazil has a high leprosy burden and poor treatment outcomes (TOs), manifesting in high relapse rates. Pernambuco, an impoverished Brazilian state suffering notable geographical health inequalities, has 'hyperendemic' leprosy. Although current literature identifies barriers and facilitators influencing leprosy treatment compliance, inadequate investigation exists on other factors influencing TOs, including carers' roles and psycho-dermatological impact. This qualitative study explores experiences and perceptions of leprosy patients and their carers in Pernambuco, Brazil; to identify location-specific factors influencing TOs, and consequently inform future management.
27, semi-structured, in-depth interviews were conducted with 14 patients and 13 carers. Participants were recruited using maximum variation and snowball sampling from three clinics in Petrolina, Pernambuco. Transcripts and field notes from both participant groups were separately analysed using conventional thematic and deviant case analysis. The University of Birmingham Internal Research Ethics Committee and Instituto Lauro de Souza Lima provided ethical approval.
Two homologous sets of four, primary, interdependent themes influencing leprosy TOs emerged: 'personal factors'; 'external factors'; 'clinical factors'; and 'the healthcare professional (HCP)-patient-carer relationship'. Poor participant knowledge and lack of symptomatic relief caused patients to distrust treatment. However, because participants thought HCP-led interventions were vital for optimal TOs, patients were effectively persuaded to adhere to pharmaceutical treatments. High standard patient and population education facilitated treatment engagement by encouraging evidence-based medicine belief, and dispelling health myths and stigma. Healthcare, on occasions, was perceived as disorganised, particularly in resource-scarce rural areas, and for those with mental health needs. Participants additionally experienced incorrect/delayed diagnoses and poor contact tracing. Leprosy's negative socio-economic impact on employment - together with stigma, dependency and changing relationships - caused altered senses of identity, negatively impacting TOs. Better dialogue between patients, HCPs and carers facilitated individualised patient support.
This study highlights the importance of: effective evidence-based leprosy education; communication between HCPs, patients and carers; state-funded support; and healthcare resource distribution. These findings, if prioritised on governmental scales, provide the valuable insight needed to inform location-specific management strategies, and consequently improve TOs. Future research should evaluate the effectiveness of these implementations. Failure to address these findings will hinder regional elimination efforts.
巴西的麻风病负担沉重，治疗效果（TOs）不佳，表现为复发率高。伯南布哥州是巴西一个贫困的州，遭受着显著的地理卫生不平等，麻风病呈“高度流行”状态。尽管目前的文献确定了影响麻风病治疗依从性的障碍和促进因素，但对于影响 TOs 的其他因素，包括照顾者的角色和心理皮肤影响的研究还不够充分。这项定性研究探讨了巴西伯南布哥州麻风病患者及其照顾者的经验和看法；确定影响 TOs 的特定于地点的因素，并为未来的管理提供信息。
对来自伯南布哥州佩特罗利纳的三个诊所的 14 名患者和 13 名照顾者进行了 27 次半结构式深入访谈。参与者使用最大变异和雪球抽样法招募。分别对两组参与者的转录本和现场记录进行了常规主题分析和异常案例分析。伯明翰大学内部研究伦理委员会和劳罗·德索萨·利马研究所提供了伦理批准。
出现了两组同源的四个主要的、相互依存的影响麻风病 TOs 的主题：“个人因素”；“外部因素”；“临床因素”；以及“医疗保健专业人员（HCP）-患者-照顾者关系”。由于患者对治疗缺乏信任，认为自己缺乏症状缓解的知识，因此不信任治疗。然而，由于参与者认为 HCP 主导的干预措施对最佳 TOs 至关重要，因此成功地说服了患者坚持药物治疗。高水准的患者和人群教育通过鼓励循证医学信仰和消除健康神话和耻辱感，促进了治疗的参与。医疗保健在资源匮乏的农村地区和有心理健康需求的地区，有时被认为是混乱的，特别是在资源匮乏的地区。参与者还经历了不正确/延迟的诊断和糟糕的接触追踪。麻风病对就业的负面影响——加上耻辱感、依赖性和关系的变化——导致了身份认同的改变，对 TOs 产生了负面影响。患者、HCP 和照顾者之间更好的对话促进了个体化的患者支持。
这项研究强调了以下方面的重要性：有效的麻风病循证教育；HCP、患者和照顾者之间的沟通；国家资助的支持；和医疗资源分配。如果在政府层面上优先考虑这些发现，将为制定特定于地点的管理策略提供宝贵的见解，并因此改善 TOs。未来的研究应评估这些实施的效果。如果不解决这些问题，将阻碍区域消除努力。
