Transcript Diapositiva 1 - Stop TB Partnership

COMMUNICATION AND ETHICS IN
TUBERCULOSIS: NEW DIALOGUES
AMONG THE AFFECTED PEOPLE, CIVIL
SOCIETY AND HEALTH SPECIALISTS
Estela Roeder – María Van der Linde
Perú - 2009
Purpose of the presentation
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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.
¿How important is Communication?
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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.
…And also a communicative context is
required
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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.
Uncertainty and social disapproval versus strengthening of
Individual and social capacities for self-fulfillment
From uncertainty and
social disapproval
Emotional
Response
Present and future
uncertainty
Rational
Response
Social
punishment
Frustration
fear
ashamed
Risks
Indiference
Individual capacities
Faith
Self confidence
Perseverance
Victory
Self-fulfillment
Social commitment
Understand and help others
At the beginning of the disease
In the stage of treatment
continued and sustained
This is due to the fact that…
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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.
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
ashamed
At the beginning
of TB
helplessness
Self-perception of
stigmatization
sadness
Discourse on
confirmation of
emotional equilibrium
and as a social
individual
happiness
pleased
confidence
Treatment
nothing
Information balance
information entropy
From the phrase “without time to live” to the discourse “to contribute and to
fortify my social networks for the sake of society”
To pass from embarrassment to dignity
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
Dehumanized
Communicated
I feel emotion,
strong, confident, I
am informed, I am
I can be cured
important, I am
with treatment
accepted,
I save my life
capable of
making decisions,
I am aware, I
have dignity
I am kind to
others, warm,
I change, I
gentle, loving,
have the
understanding, I
intention, I
want to
make a
encourage,
commitment
support, help
others. I feel
close to them
I recover my humanity
From a misinformed individual to an empowered one who communicates others how to
confront TB
Some items about health care staff
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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.
That is the reason why Communication must be
developed under two aspects.
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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.
Important conclusions
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A change of paradigm in order to struggle against
stigma and discrimination, which starts in health
care services: Uncertainty and distrust versus
solidarity and commitment.
Stigmatization is due to a lack of information and
communication strategies that can create
communicative contexts and actions of social
communication with community and family.
Challenges
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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.
Challenges
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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.
Challenges
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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.
Challenges
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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.
Challenges
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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.
Challenges
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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