Communication and Information Barriers to Health Assistance for Deaf Patients
Pereira, Patrícia Cristina Andrade, Fortes, Paulo Antonio de Carvalho, American Annals of the Deaf
IN BRAZIL, recent regulations require changes in private and public health systems to make special services available to deaf patients. In the present article, the researchers analyze the perceptions of 25 sign language-using patients regarding this assistance. The researchers found communication difficulties between these patients and health services staff, as well as a culture clash and a harmful inability among the service providers to distinguish among the roles of companions, caretakers, and professional translator/interpreters. Thus, it became common for the patients to experience prejudice in the course of treatment and information exchange, damage to their autonomy, limits on their access to services, and reduced efficacy of therapy. The researchers conclude that many issues must be dealt with if such barriers to health access are to be overcome, in particular the worrying degree of exclusion of deaf patients from health care systems.
The health system in Brazil (SUS) is constituted as national health care, which means it has ensured free and all-encompassing access to every citizen since 1988, since promulgation of the new federal constitution. Hence, the rights of all people are assured, including those with disabilities. Bill 23/11 states that "it is of common competence to the Country, States, the Federal District, and the municipalities to provide health care and public service, as well as protection and guarantees to disabled people. "
FEDERATIVE REPUBLIC OF BRAZIL (1988)
In the 1990s, the World Health Organization (WHO) estimated that around 10% of the population in any country, in peacetime, had some kind of disability, among whom 1.5% (about 2.25 million people) had hearing disabilities (World Health Organization, 1997).
According to the Brazilian census of 2000, about 24.5 million people, or about 14.5% of the Brazilian population, had some kind of disability. This included anyone who referred to any difficulty with vision, hearing, or mobility, or who had some type of mental disability. The concept of activity limitation used in the census at the time followed the recommendations of the WHO and the United Nations. On the basis of the census data, it was estimated that 5,750,890 Brazilians had some sort of hearing disability (Fundaçâo Instituto Brasileiro de Geografìa e Estatística, 2003).
However, the National Health Policy on Persons With Disabilities (Política Nacional de Saude da Pessoa Portadora de Deficiencia) recognizes that it is very difficult to estimate the real number of people with disabilities in Brazil, especially in the Deaf community, "due to the almost complete lack of data and information systematically produced nationwide and that would be faithful to the reality of the country in this area" (Brazilian Ministry of Health, 1989).
Although it is recognized that the size of the Deaf community is still numerically underestimated in Brazil, the community's characteristics can be grasped by means of socioanthropological studies that demonstrate that this sociolinguistic cultural minority requires cross-cultural services that are particularly attentive to linguistic challenges, given that deaf people in Brazil constitute a linguistic subgroup whose main language is Brazilian Sign Language (LIBRAS).
Federal Law 10.436/02, which gave official status to LIBRAS, defines it "as the means of communication and expression in which the linguistic system, by its motor-visual nature, with its own grammar, constitutes a linguistic system to transmit ideas and facts originated in deaf communities in Brazil" (Brazilian Ministry of Health, 2005).
Decree 5626/05, a regulation put in place for the implementation of Federal Law 10.436/02, affirms that health services must assist the Deaf community in a tailored manner. Valid since December 2006, Decree 5626/05 establishes that the health network must be equipped with resources such as professionals capable of using sign language or must provide means to allow the required presence of a translator/ interpreter of LIBRAS. …