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Hindi Improving leprosy treatment outcomes in Pernambuco, Brazil: A qualitative study exploring the experiences, perceptions, and beliefs of retreatment patients and their carers
Abstract
Brazil has a high leprosy burden and poor treatment outcomes (TOs). Pernambuco, an impoverished Brazilian state, has ‘hyperendemic’ leprosy. While current literature focuses on treatment compliance, inadequate research exists on other factors influencing TOs. This qualitative study explores the views of leprosy patients and their careers in Pernambuco,Brazil, identifying location-specific factors influencing TOs. Semi-structured, in-depth interviews were conducted with 14 patients and 13 carers, recruited using purposive and snowball sampling from three clinics in Petrolina, Pernambuco.Transcripts and field notes were analyzed using conventional thematic and deviant case analysis. The University of Birmingham and the Instituto Lauro de Souza Lima, Brazil provided ethical approval.Two sets of four interdependent themes emerged: ‘personal factors’; ‘external factors’; ‘clinical factors’; and ‘the HCPpatient- carer relationship’. Inadequate participant knowledge and symptomatic relief caused distrust in treatment. However, HCPs effectively persuaded participants to adhere to pharmaceutical treatments. Better participant education facilitated treatment engagement, by encouraging evidencebased medicine belief and dispelling health myths and stigma. Healthcare was occasionally perceived as disorganized, particularly in resource-scarce suburbs and psychiatric care.
Participants experienced ineffective diagnosis and contact tracing. Leprosy’s negative socio-economic impact, effect on
interpersonal relationships, and stigma unfavorably caused altered senses of identity. Dialogue between patients, HCPs and
carers facilitated individualized patient support This study highlights the importance of evidence-based leprosy education; communication between HCPs, patients and carers; state funding; and healthcare resource distribution. These findings inform location-specific leprosy-targeting strategies, and if ignored may hinder regional elimination. Future research should evaluate the effectiveness of newly implemented leprosy-targeting strategies.
