O itinerário terapêutico de pessoas acometidas pela hanseníase: dos sinais e sintomas ao diagnóstico

Abstract

Introduction: The therapeutic journey of people with leprosy is influenced by multiple biopsychosocial factors that directly impact diagnosis and access to treatment. Objective: To understand the therapeutic journey of people with leprosy, from the perception of the first signs and symptoms to obtaining a diagnosis. Methodology: This is a qualitative, descriptive study conducted with nine people undergoing leprosy treatment in a specialized outpatient clinic of a referral hospital in São Luís, Maranhão. Data collection involved a questionnaire to characterize the participants and an interview guide with questions focused on signs, symptoms, and the journey in the search for diagnosis and treatment. The interviews were recorded and, with participants aged 7 to 67, conducted in the presence of their legal guardians, transcribed verbatim, and subsequently subjected to textual analysis using IRAMUTEQ software, which enabled the organization, processing, and analysis of the textual data. Results: Six participants self-identified as mixed race and three as Black. Regarding family composition, most lived with three to seven people in the same household, and only one lived alone. Textual analysis highlighted the frequency and association of terms related to the participants' experiences. Factorial Correspondence Analysis identified four main clusters: medication treatment, diagnostic process, physical symptoms, and seeking care. The dendrogram organized the content into thematic classes, highlighting the physical and social impacts, and difficulties in accessing diagnosis. Similarity analysis and word cloud analysis revealed the centrality of the word "no," indicating uncertainty, barriers, and feelings of denial in the participants' experiences. Four categories emerged from the interviews: a) Difficulty in diagnosis and health path; b) Waiting for Treatment to Begin; c) Impact on the individual and family; and d) Obstacles related to treatment. The accounts highlight journeys marked by misinformation, stigma, and institutional barriers. Final considerations: The therapeutic pathway has proven fragmented, requiring intersectoral and educational interventions that promote early diagnosis and comprehensive care. Emphasizing qualified listening and strengthening primary care are essential to reducing the time between the first signs and symptoms and diagnosis.