University networks to combat Hansen’s disease as information technology and stigma reduction

The National University Network against Hansen’s disease (REUNA-HANS) aims to integrate educational institutions, health services, social movements and scientific associations into the development of teaching, research and extension activities that contribute to the dissemination of knowledge aimed at Hansen’s disease control and elimination.

In this way, the insertion of new technologies in the health area becomes more and more present, because through technical and scientific knowledge it is possible to transform it into tools, processes and instruments that can help in the promotion, prevention and recovery of the individual's health (1).

In this context, REUNA-HANS is a light technology, developed by three teaching nurses and two physiotherapists from their respective institutions: Federal University of Alagoas, Federal University of Ceará, Faculty of Rondônia, Federal University of Sergipe and Federal University of Pará. Currently, it has the participation of 26 states and 225 people distributed among teachers and students from public and private institutions, reference service professionals, managers, researchers and social movements. The creation of the network is influenced by the Movement of Persons Afflicted by Hansen’s disease (MORHAN), the participation in this space broadens the view of the researcher beyond the disease, since it allows people to meet with a common goal: the fight against Hansen’s disease in all its aspects. Entering the space for discussion and participation of people who have become ill or have lived with someone who has the disease triggers an approach to the main needs and struggles of this public.

In this context, it was realized that we could go further, take these yearnings to the academy space. Thus, the network emerged, enabling the exchange of experiences of the several integrated professionals, which through the study of clinical cases, or through inter-institutional support, expands access to information and more complex services, still corroborates to help in the professional protagonism, mobilizing resources and skills, with a view to promoting and preventing Hansen’s disease and reducing the stigma that the disease still causes nowadays.

The network was established in 2015. In 2016, using the space made available by the congresses in the area, work was done to disseminate and attract professionals to join the network, when the idea of state networks was promoted. Thus, in the following year, it was sought to decentralize, when the 26 state networks were established. The group includes several professional categories such as nurses, doctors, physiotherapists, psychologists, dentists, pharmacists, biomedicals, occupational therapists, social workers, lawyers, sociologists and anthropologists.

From this perspective, the network is composed of a multiprofessional team, which makes it possible to do an integrated and cooperative work based on multiple interventions and techniques (2). As a health technology, the network allows the exchange of experience of various services, training of professionals and researchers, the matriculation of professionals by experts in the area and the dissemination of recent research involving the thematic studied.

Most of the professionals in the university network are references in the field of of Hansen’s disease studies in their states and can use the expertise of others to build line of care for these people in their local realities. As well, some are active as researchers in educational institutions, and tirelessly attempt to insert the Hansen’s disease theme into the extension groups in order to reconstruct in the very near future a practice necessary for the epidemiological reality in Brazil.

In this sense, the development of Hansen’s disease care lines in many states still seems to be a distant reality. Confronting Hansen’s disease is extremely complex as the disease is not only biological but also has a psychosocial and anthropological nature (3). Thus, the network intends not only to reinforce the discussion of lines of care for people affected by Hansen’s disease, but also to insert into these lines the discussion of the stigma, since this interferes with the treatment of the disease and it widens social isolation. The stigma also makes access to treatment difficult and can culminate in worsening disability (4).

The studies highlight the need for professionals prepared to provide care not only for the biological issue of the disease, but also for the psychological and even psychiatric matter, since social stigma can induce psychological disorders in people with Hansen’s disease. Thus, qualified professionals are needed to provide comprehensive psychosocial care, considering that the social stigma that permeates Hansen’s disease plays a significant role in inducing psychological conditions such as depression and anxiety disorders (5).

With the incorporation of new staff, mental health researchers, it became apparent how fragile the discussions and studies on the mental health of people affected by Hansen’s disease were. Therefore, the aim is to broaden discussions on the stigma of Hansen’s disease patients and their mental health implications.

Accordingly, the university networks contribute to awareness and dissemination of knowledge involving Hansen’s disease, enabling the integration of technical and scientific expertise from researchers, professionals and managers in favour of more effective and resolutive care for people affected by Hansen’s disease. Thus, it is necessary to expand this technology at the state and municipal levels in the various educational and health institutions of the country.