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), 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. 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. The University of Birmingham Internal Research Ethics Committee and Instituto Lauro de Souza Lima provided ethical approval. Results 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. 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, and consequently improve TOs. Future research should evaluate the effectiveness of these implementations. Failure to address these findings will hinder regional elimination efforts.

Experiences of living with leprosy: A systematic review and qualitative evidence synthesis

“…The most frequently absent detail in the included studies was the information on the influence of the researcher on the research (question 7, S5 Appendix); only five studies reported this item. [34,45,58,62,73] Seventeen studies [12,19,43,44,47,59,63,65,[69][70][71][75][76][77]79,80,83] had no obvious statement locating the researcher culturally or theoretically.…”

“…This synthesised finding consisted of three categories and 43 findings from 27 studies. [12,16,18,[43][44][45][48][49][50]52,54,[58][59][60][62][63][64][65][66][67]72,76,78,[81][82][83]87] This synthesis documented the effects of leprosy on the skin, eyes, wounds on their limbs, nerve injury, and pain. Due to poor access to healthcare and delays in treatment, the individuals suffering from leprosy developed deformities that impacted their day-to-day activities.…”

“…Due to poor access to healthcare and delays in treatment, the individuals suffering from leprosy developed deformities that impacted their day-to-day activities. [12,16,44,50,52,59,72,81,87] Some studies stressed the importance of participating in self-care programmes. Due to the lack of information and education, the leprosyaffected individuals could not participate in the self-care programmes to improve their health outcomes.…”

“…Some reported the benefits of treatment and self-care, while others suffered some difficulties. [12,44,45,50,59,76,81] Many reported a good relationship with the healthcare professionals, who provided enormous support [16,59,66], but some found their rapid turnover lacked continuity and caused insecurities [87]. 'Anytime we were referred to Korle-Bu, we felt uncomfortable because we would be asked to buy our medication [.…”

A Pilot Study to Investigate the Role of Virtual Reality in the Preservice Training of Nursing Staff in Isolation Wards

“…Individuals with identified missing demographics were sought in further sampling processes. 20 The interview was arranged within 2 days after the in-person training. The qualitative data collection and analysis occurred in a concurrent and iterative fashion.…”