La intervención comunitaria con personas afectadas por lepra en contextos endémicos

Résumé

ntroducción: La participación comunitaria se considera una prioridad en las estrategias relacionadas con la lucha de las enfermedades tropicales desatendidas como la lepra. En ellas se resalta la importancia de involucrar a todas las personas y sus comunidades, incluidas las mujeres, en la toma de decisiones que tienen que ver con su salud y bienestar. Además, la participación de otras partes implicadas como el personal sanitario, tiene un efecto positivo sobre la participación comunitaria y contribuye a su efectividad e impacto sobre la salud. El interés global de esta tesis se fundamenta en la necesidad de generar evidencia relacionada con el impacto de los programas de intervención comunitaria en la lucha contra la lepra. Además, se ha considerado relevante hacerlo desde una triple perspectiva: la evidencia científica, el enfoque de género y la mirada de los y las profesionales de la salud. Desarrollo teórico: Se planteó como objetivo principal de esta tesis doctoral analizar los programas de intervención comunitaria como estrategia para mejorar la salud y bienestar de las personas afectadas de lepra. Y como objetivos específicos: 1. Describir experiencias de programas con personas afectadas por lepra en los países endémicos generando información útil sobre el impacto de las intervenciones comunitarias. 2. Analizar la inclusión de la perspectiva de género en estudios sobre programas de participación comunitaria llevados a cabo con personas afectadas por la lepra en países afectados. 3. Explorar las percepciones de los y las profesionales de la salud de organizaciones locales sobre el desarrollo de programas con personas afectadas por la lepra en India y Brasil. Para la consecución de estos objetivos se llevaron a cabo tres estudios. En primer lugar, se realizó una scoping review donde se analizaron artículos de diversas bases de datos que hacían referencia a programas de intervención comunitaria dirigidos a personas afectadas por la lepra en países de prioridad global y que presentaron una evaluación de resultados. En segundo lugar, se realizó una revisión crítica de la literatura con enfoque de género partiendo de los artículos identificados en la scoping review previa. Por último, se realizó un estudio cualitativo basado en la respuesta escrita a un cuestionario de preguntas abiertas que se envió por correo electrónico a 27 profesionales, 14 mujeres y 13 hombres, de 10 y 6 organizaciones locales de India y Brasil, respectivamente. En la scoping review, se analizaron treinta artículos que cumplieron los criterios de inclusión. En su mayoría estaban relacionados con la salud y se dirigían a la población adulta. Todos evaluaron los indicadores utilizados positivamente. Ninguno incluyó indicadores que evaluaran directamente la participación comunitaria. El grado de participación analizado oscilaba entre la movilización y la colaboración. Tras revisar de nuevo los treinta estudios para la revisión crítica con enfoque de género, se obtuvo que en la mayoría de las secciones analizadas no se tuvo en cuenta la perspectiva de género. Aunque había una tendencia a desagregar los datos por sexo, los subgrupos de hombres y mujeres no fueron analizadas, ni hubo discusión de las diferencias entre los dos. En todos los artículos había evidencia de la presencia de sesgos de género y en la mayoría de ellos se usaron correctamente los términos sexo y género. Tras el análisis cualitativo de las 27 entrevistas realizadas a profesionales de la salud, los resultados mostraron algunas barreras que dificultan su trabajo diario como el estigma social, las desigualdades, las desigualdades de género, la difícil gestión de la enfermedad, los servicios limitados, la falta de recursos y la falta de participación de la comunidad. Además, identificaron algunas recomendaciones necesarias para mejorar el desarrollo y la sostenibilidad de estos programas. Conclusiones: Hay una relación positiva entre las intervenciones comunitarias con personas afectadas de lepra y los indicadores de salud, aunque los diseños empleados no permiten la atribución directa a la participación comunitaria. Concretamente en India y Brasil, se evidencian progresos en torno al desarrollo de los programas de intervención comunitaria, a pesar de que los y las profesionales siguen percibiendo barreras que lo obstaculizan. En relación con la perspectiva de género, hay una inconsistencia entre la evidencia analizada y los resultados obtenidos. Serían necesarias investigaciones más rigurosas que incluyan indicadores adecuados y a las personas afectadas por lepra para evaluar la efectividad de la participación comunitaria. Identificar las barreras que dificultan la sostenibilidad y efectividad de estos programas permite definir estrategias específicas para paliarlas. Éstas deben ir encaminadas hacia la participación de todas las partes, con enfoques de género y basados en los derechos humanos, con el fin de garantizar la cobertura universal y la sostenibilidad de los programas con personas afectadas por lepra. Palabras clave: lepra, participación comunitaria, programas de salud, género, sostenibilidad, interseccionalidad, derechos humanos. Bibliografía: 1. Santacroce L, Prete R del, Charitos IA, Bottalico L. Mycobacterium leprae: A historical study on the origins of leprosy and its social stigma. 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