Estela Roeder – María Van der Linde Perú - 2009

1. Communication and ethics in Tuberculosis: new dialogues amongtheaffectedpeople, civil society and healthspecialists Estela Roeder – María Van der Linde Perú - 2009

2. Purpose of the presentation • Contribute to a reflection and a debate over the role of communication in tuberculosis topic. • Propose a conceptual framework of Communication and its relation to ethics. • Build bridges from previous experience in order to develop the ACSM model.

3. ¿How important is Communication? • In relation to health field, it is a vital issue because communication is dynamic and it helps people create bonds. • A healthy person requires communication to maintain good health. • A sick person requires communication to understand his case, to know about the cure and, eventually, to return to his social life.

4. …And also a communicativecontext is required • If appropiate environment and scenario for communication in health care are developed, citizens will fortify themselves and become efficient because information is essential to achieve this. • Knowing about the existence of this atmosphere means to consider research as a starting point.

5. Uncertainty and social disapproval versus strengthening of Individual and social capacities for self-fulfillment Individual capacities Faith Self confidence From uncertainty and social disapproval Emotional Response Present and future uncertainty Frustration fear ashamed Perseverance Risks Victory Rational Response Self-fulfillment Social commitment Social punishment Indiference Understand and help others At the beginning of the disease In the stage of treatment continued and sustained

6. This is due to the fact that… • The community has beliefs about tuberculosis, which are assumed by the sick person. • Tuberculosis is a contagious and incurable disease and there is a fear of contagion • In the case of the person affected by TB: he feels guilty about the disease, depressed, and without plans for the future. • The person affected by tuberculosis defines himself as guilty and condemn himself.

7. Emotions and daily speech of a person affected by TB From existential emptiness to recognition as a social individual fear Tranquillness Discourse on refusal of being the owner of his life happiness ashamed At the beginning of TB Discourse on confirmation of emotional equilibrium and as a social individual pleased helplessness Self-perception of stigmatization confidence sadness Treatment nothing Information balance information entropy

8. From the phrase “without time to live” to the discourse “to contribute and to fortify my social networks for the sake of society” Misinformed I am sick and tubercular I am impatient, afraid, frustrated, shamed. I do not have enough time People do not understand me, are selfish and reject me. People mistreat me, go away, leave me isolated, reject me, discriminate me, they are unconscious, indifferent To pass from embarrassment to dignity Dehumanized Communicated I am kind to others, warm, gentle, loving, understanding, I want to encourage, support, help others. I feel close to them I can be cured with treatment I save my life I feel emotion, strong, confident, I am informed, I am important, I am accepted, capable of making decisions, I am aware, I have dignity I change, I have the intention, I make a commitment I recover my humanity From a misinformed individual to an empowered one who communicates others how to confront TB

9. Some items about health care staff • We can find two discourses and attitudes that coexist in a health care center. • On one hand, a rational fear, because health care staff knows about the contagion process, the stages of tuberculosis, and the cure. • On the other hand, an irrational fear, when health care staff has little information on the topic and blame the patient for being a carrier.

10. That is the reason why Communication must be developed under two aspects. • Rational, it is surmountable thanks to information and knowledge adquisition • Irrational, it is about information and “demythologization”. On the field of education, in a subjective way, it would be motivation and involvement. • In both of them, the key topics are: values, ethics, and citizenship.

11. Important conclusions • A change of paradigm in order to struggle against stigma and discrimination, which starts in health care services: Uncertaintyand distrust versus solidarity and commitment. • Stigmatization is due to a lack of information and communication strategies that can create communicativecontexts and actions of social communication with community and family.

12. Challenges • Support and complementation of the communicative strategies are nuclear factors that determine the accomplishments and results. This has been demonstrated by the work performed by the Control of Tuberculosis Program (CTP) and the organized community: the communicative actions reinforced and/or maintained the strategies of respiratory symptomatic identification.

13. Challenges • Involvement and commitment from multiple sectors, to obtain greater effectiveness of the strategies and the sustainability of the interventions. In order to have an approach to TB as a complex problem with multiple causes that requires the coordinated operation of state actors.

14. Challenges • Participation of people affected by TB is essential in the fight against tuberculosis. Their participation means feeling solidarity with other patients, information dissemination, personal testimonies and stories based on the experiences in the treatment process, particularly in multi-drug resistant TB, the follow-up and supervision of the completion of the treatment.

15. Challenges • Affected people participation also must occur at a level of design of communication strategies and activities. Their experience and perception of the disease make them become valid informants. • Research is a key activity, on the perception and practices of people, their concepts about the problem, the process of personal decision making, as well as the interactive scenarios.

16. Challenges • Advocacy is a necessary instrument to mobilize decision makers and population for the prevention of tuberculosis. • Communication experiences should be evaluated and related to epidemiology indicators. ACSM must select its own indicators and develop its monitoring system. • 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.

17. Challenges • Finally, learnt lessons and appropriate communication practice in TB are important elements for the development of the ACSM model that today invites us to work. Thank you