Communication and Ethics in Tuberculosis: New Dialogues among the Affected People, Civil Society and Health Specialists

This PowerPoint presentation aims to foster reflection on and a debate about the role of communication in addressing tuberculosis (TB). It proposes a conceptual framework of communication and its relation to ethics, building from previous experience in order to develop the advocacy, communication, and social mobilisation (ACSM) model.

The reader learns that communication is dynamic and helps people - whether healthy or sick - to create bonds. For instance, a sick person "requires communication to understand his case, to know about the cure and, eventually, to return to his social life." As noted here, information - starting with research - is crucial to enabling citizens to fortify themselves in building an appropriate environment for communication in health care.

The dynamic of moving from uncertainty and social disapproval (at the beginning of the disease) versus strengthening of individual and social capacities for self-fulfillment (in the stage of treatment) is outlined in one of the slides. Also outlined in a visual diagram is the fact that a person affected by TB can go from existential emptiness to recognition as a social individual based on a scale through which one moves from "information entropy" (discourse on refusal of being the owner of his or her life) to "information balance" (discourse on confirmation of emotional equilibrium and as a social individual). To pass from embarrassment to dignity, as another slide pictures, an individual can move from the phrase "without time to live" to the discourse "to contribute and to fortify my social networks for the sake of society" to empowerment in the sense that one communicates to others how to confront TB.

The need for communication in the TB context is outlined based on the observation that 2 discourses and attitudes coexist in a health care centre: On one hand, there is a rational fear (staff knows about the contagion process, the stages of tuberculosis, and the cure); on the other, there is an irrational fear (where staff has little information on the topic and blames the patient for being a carrier). In both of them, the key topics are: values, ethics, and citizenship.

In conclusion, the presentation suggests that a change of paradigm is needed in order to struggle against stigma and discrimination, which starts in health care services. For example, as stated here, stigmatisation is due to a lack of information and communication strategies that can create communicative contexts and actions of social communication with community and family. Amongst the strategies outlined here are: involvement and commitment from multiple sectors, participation of people affected by TB, research, and advocacy. Specific to ACSM: ACSM should select its own epidemiology indicators and develop its own monitoring system in order to evaluate communication experiences; and approaches to citizenship and human rights should be included in the communication strategies to face and reduce stigma. "Ethics is what gives sense to these approaches."