Hanseníase: políticas públicas e qualidade de vida de - Centro de ...

Abstract
Leprosy is a reportable disease that is included in the list of neglected and stigmatizing
diseases. The stigma of the disease results from the translation of the biblical word tsaraath
that brought to Western culture a charge of beliefs about divine sentence, punishment and sin,
that influenced the medieval Europe’s cruel manner to deal with the disease. Since the
fifteenth century, leprosy becomes a mainly a colonial disease, reducing dramatically in
Europe due to the improvement of sanitary conditions. At the end of the nineteenth century,
the discovery of the bacillus of Hansen brougth a scientifically based justification for the
isolation of patients, a fact that will influence the way that Brazilian public health will deal
with the disease.
In this dissertation, the objective was to contextualize the public policies adopted, and the
role of Hansen's disease in quality of life of caregivers and people living with its
consequences.
It was conducted a review of the literature concerning the history of public policies to fight
against leprosy / Hansen's disease, with consultation of primary sources, scientific papers,
and secondary sources, websites and e-books. It was held concurrently a review of the
medical literature for scientific information on caregivers and quality of life (QoL).
Intelligence were collected from patients about sociodemographic data, clinical data,
autonomy and cognition; to the caregivers there were collected demographic data and data
about care. It was applied Minimental and questionnaires assessing activities of life to
patients, and the WHOQOL-brief questionnaire to patients and caregivers.
Brazillian public policies concerning leprosy started only in the twentieth century,
caracterized by isolation and segregation of patients, adopting a model initially created in Sao
Paulo state since the Getúlio Varga´s government, based on the “anti-leprotic tripod”:
leprosariums, preventoriums and dispensaries. This model would last even after the discovery
of treatment with sulfones, and would prove ineffective both for prophylaxis, and for healing
the sick, causing physical and psychological sequelae with serious consequences for the
isolated patients. The statistical analysis of the patient-caregiver binomial showed the lowest
scores for quality of life for patients in the physical and mental, with better scores for the
social domain WHOQoL. Caregivers had lower scores than the patients in the social domain,
and higher in the physical domain, with no difference in the environment and psychic
domains. The univariate linear regression analysis showed significant correlations: the
presence of a companion, pacient’s autonomy and caregiver's age influenced the patient's
QoL. For the caregiver, clinical and patient autonomy influenced the environment and social
domains, and caregiver's own data influenced the psychic domain. The peculiarities of the
isolation and stigma were determinative in both. The patient who has exposed its sequels and
the external environment has lowest scores of quality of life, and widowhood is associated
with better QoL scores because of gaining financial and patriarchal independence and
because of the social network formed. For caregivers, the patient’s use of wheelchair
generates less overhead due to clinical improvement after amputation, but the particularities
of patient autonomy generate QoL scores that are directly impacted by the natural evolution
and the consequences of leprosy. In short, the isolation in Leprosarium was responsible for
the emergence of physical and emotional consequences with a negative impact on QoL of the
binomial patient-caregiver, but the resilience mediated by a social network, augmented by an
entity of social support (MORHAN) plays an important role in QoL, particularly in the social
domain. The analysis also demonstrated that the correlations between autonomy and quality
of life does not have a linear relationship, indicating the need for further studies to suggest
ways in which the transition from independence to dependence, especially in the elderly,
being the population of leprosy patients also influenced by local peculiarities.
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