Improving treatment outcomes for leprosy in Pernambuco, Brazil: a qualitative study exploring the experiences and perceptions of retreatment patients and their carers

ABSTRACT

Background: Brazil has a high leprosy burden and poor treatment outcomes (TOs). Pernambuco, an impoverished Brazilian state suffering from notable geographical health inequalities, has 'hyperendemic' leprosy. Although current literature identifies the barriers and facilitators influencing leprosy treatment compliance, there is inadequate investigation into other factors influencing TOs, including carers' roles. This qualitative study explores the experiences, perceptions and beliefs of leprosy patients and their carers in Pernambuco, Brazil; to identify location-specific factors influencing TOs, and consequently appropriately inform future management strategies. Methods: 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. Ethical approval was obtained from the University of Birmingham Internal Research Ethics Committee and the Instituto Lauro de Souza Lima, Brazil. Results: Two homologous sets of four, primary, interdependent themes influencing leprosy TOs emerged 'personal factors'; 'external factors'; 'clinical factors'; and 'the 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 an altered sense of identity, negatively impacting TOs. Better dialogue between patients, HCPs and carers facilitated individualised patient support. Conclusion: 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, which are required to improve TOs. Future research should evaluate the effectiveness of these implementations. Failure to address these findings will hinder regional elimination efforts.