Main difficulties and obstacles faced by the deaf community in health access: an integrative literature review

ABSTRACT

The main obstacles faced by deaf people in access to healthcare services were investigated in the literature. This is an integrative literature review, considering studies published between 2006 and 2016, using combinations of controlled descriptors. The virtual databases used were: LILACS, PUBMED and SciELO, including articles published in English, Portuguese and Spanish. The final sample was composed of 24 articles, selected after analysis of titles, abstracts and full texts. The elected studies were categorized according to themes and to the presented difficulties, mainly concerning communication obstacles between deaf and normally hearing people. This fact interferes on the doctor-patient relationship, producing a poor understanding by the deaf community about the health-disease process and causing a challenging integration of those people in the society. The majority of the analyzed studies indicated that the main obstacles faced by the deaf regarding the access to healthcare services are communication related, especially the healthcare professionals unfamiliarity with the Brazilian Sign Language (LIBRAS). In addition, there is also the need for a family member or interpreter to be present during the consultation. Furthermore, the lack of perception on the hearing society part, of the deaf community as bilingual and multicultural subjects, was verified.

Keywords:
Deafness; Hearing Impaired Persons; Health Services Acessibility; Health Equity; Health Care Quality, Access and Evaluation

RESUMO

Buscou-se identificar na literatura os principais obstáculos e dificuldades enfrentadas por pessoas surdas quanto ao acesso à saúde. Trata-se de uma revisão integrativa de literatura, considerando estudos publicados entre 2006 e 2016, utilizando combinações de descritores controlados. As bases de dados virtuais utilizadas foram: LILACS, PUBMED e SciELO, incluindo artigos publicados em Inglês, Português e Espanhol. A amostra final foi composta por 24 artigos, selecionados após análise dos títulos, resumos e textos na íntegra. Os estudos selecionados foram categorizados quanto às principais temáticas e dificuldades enfrentadas pela comunidade surda, sendo principalmente relacionadas à barreira comunicacional existente entre ouvintes e surdos. Tal fato culmina em interferências na relação profissional-paciente, compreensão deficitária das pessoas surdas quanto ao processo saúde-doença e as dificuldades de integração da pessoa surda na comunidade. Na maioria dos estudos analisados, evidenciou-se que as dificuldades enfrentadas pelas pessoas surdas quando buscam atendimento em saúde são ligadas à comunicação, bem como desconhecimento de Língua Brasileira de Sinais (LIBRAS) por grande parte dos profissionais de saúde. Além disso, também há a necessidade de familiar ou intérprete presente durante a consulta e a falta de compreensão de grande parte da comunidade surda como sujeitos bilíngues e multiculturais.

Descritores:
Surdez; Pessoas com Deficiência Auditiva; Acesso aos Serviços de Saúde; Equidade em Saúde; Qualidade, Acesso e Avaliação da Assistência à Saúde

Introduction

People with disabilities have been a relevant topic of discussion at the global and national levels in an attempt to bring social, educational and health equity to these people, since the data reflect a significant amount of this portion of the population. In Brazil, according to the 2010 Census, there are 23.9% of the national population with some type of disability, of which 5.1% are deaf ¹; and, on a global scale, the deaf community totals about 360 million people ². Because it is a linguistically and culturally minority community, deaf people face numerous barriers to accessibility for various services, especially health services. In this context, there is a need for a systematic investigation of the main obstacles faced by deaf people regarding access to healthcare in Brazil and in the world.

Created almost three decades ago under an atmosphere of struggle for more social justice and equity, the Unified Health System (SUS) was part of a major healthcare reform and redemocratization process in Brazil, with the health concept as a "right of all and one duty of the State" ³. However, after 29 years of its creation, SUS still shows great inequalities in the distribution of resources, promotion of services and accessibility to health, reinforced by historical social inequalities in the country. Equity in access to health services is little noticed, reflecting differing health indices across different regions, races / ethnicities, or incomes. Therefore, although the SUS has played an important role in the extension of care coverage to the entire Brazilian population, there are still people or issues invisible in health, the result of social invisibility, who suffer from the prejudice and indifference of society and have less reach to SUS services ¹. Within this scenario, the deaf community finds itself in this part of the population that does not get equal care in public health systems, being marginalized from society and services. Deaf patients generally seek the health system less frequently than hearing patients, referring, as the main difficulties, they feel fear, mistrust and frustration ⁴.

The challenge of attending the deaf subject in the health units is characterized mainly by the communication barrier ^5-7, due to the lack of preparation of health professionals and lack of knowledge about this individual, how to deal with this type of situation and how to interact with them. In addition to the linguistic challenge, the deaf still face obstacles in the accessibility to health due to the humanization deficit in the professional-patient relationship ^5-8, low knowledge of deaf people on the health-disease process ^9-11 and the difficult process of their inclusion in society ^8,9,12,13. It is important to emphasize that the vast majority of the deaf population is not aware of the Portuguese language, as they have a completely different vocabulary and grammar from the Brazilian Sign Language (LIBRAS), its first language, making written communication full of obstacles, since it should be made with terms of easy understanding and simplistic language ⁴.

Since 2006, the rights of users of health services for the deaf and hearing impaired are guaranteed by the National Policy on the Health of Persons with Disabilities ¹⁴. From Decree 5626/05, it was determined the obligation to organize the SUS services for the deaf person ¹⁵, however, more than 10 years later, the public health system still presents many flaws and obstacles in serving this portion of users. In a study carried out in the city of São Paulo (SP) ¹², the authors pointed out some of the main problems faced by the deaf community in the access to public and health services: communication barriers, shortage of Individual Sound Amplification Apparatus (AASI), few adaptations for deaf users, lack of staff training, absence of captions in campaigns, absence of preferential queue and services.

The deaf community is a linguistic and cultural minority that is marginalized in large part of the public services. In the health area, for example, they face great obstacles related to SUS accessibility, mainly due to the communicative barrier and the difficult inclusion of these in the hearing society. In view of the above, the objective is to systematically research and analyze the available scientific publications regarding the difficulties faced by the deaf in the accessibility to healthcare.

Methods

It is an integrative review of the literature, which consists of the research and careful evaluation of published studies in relation to the hypothesis proposed. Considering the results obtained, it allows the execution of the evidence raised in practice ¹⁶. The hypothesis raised for the investigation of the study was: “What are the main obstacles faced by the deaf community in access to health in general?”.

In order to guarantee the methodological accuracy of the study, the six steps proposed by Mendes, Silveira and Galvão were followed ¹⁷. Being them, respectively, hypothesis establishment or research question; sampling or searching in the literature; categorization of studies; evaluation of the studies included in the review; interpretation of results; and, finally, the synthesis of the knowledge or presentation of the revision.

For this purpose, the virtual databases were consulted: Latin American Literature in Health Sciences (LILACS), PUBMED and Scientific Electronic Library Online (SciELO).

The search for works in this literary review was oriented according to the combination of 05 (five) descriptors, applying Boolean modulators, indexed in the DeCS (Descriptors in Health Sciences) and MeSH (Medical Subject Headings), the first being an adaptation and enlargement of the MeSH, applying a unique language in the indexing of articles of scientific journals, books, annals of congresses, technical reports, and other types of materials, as well as in research and recovery of subjects of scientific literature. The second one is a system of medical metadata referring to the nomenclature and indexing of articles in the field of health sciences, based on the MedLine-PubMed system. Six search keys were used in total, searched in the English and Portuguese languages. For the screening, the descriptors were used as shown in Table 1.

Table 1:
Indexed descriptors in the Medical Subject Headings and Descriptors in Health Sciences used in the search strategy

The analysis of the data followed inclusion criteria based on the theme proposed by the present research, being (1) studies carried out between the years 2006 and 2016; (2) who had full text available online; (3) published in the English, Portuguese or Spanish languages and (4) that addressed strategies of accessibility to health for the deaf community. Studies dealing with the deaf community without reference to accessibility to health services, repeated articles, and work that have not been done in the last ten years were excluded.

After analyzing the studies, applying the inclusion and exclusion criteria, 1019 articles were found. The first stage of the screening selected a total of 76 articles based on the reading of their titles. Subsequently, the abstracts presented in the selected papers were read out, separating 40 papers. At the end of the process, 27 articles were analyzed, and after the exclusion of repeated works, the final sample had 24 articles.

For qualitative analysis of the articles found in the final sample, we used levels of evidence proposed by Stillwell ¹⁶: I - Systematic review or meta-analysis; II - Randomized controlled clinical trial; III - Controlled clinical trial without randomization; IV - Case control or cohort study; V - Systematic review of qualitative or descriptive study; VI - Qualitative or descriptive study; VII - Article of opinion or consensus of governmental organs or council of medical specialties. The data obtained after reading the abstracts and the articles were presented as a descriptive summary in tables and charts that include the information on the level of evidence and categorization of the study.

The construction of the analyzed data sample, from the search strategies described above, is arranged in the mental map format in Figure 1. The FreeMind software program were used (available for free at: <http://freemind.sourceforge.net/wiki/index.php/Download>) for the production of the mental map, facilitating the visualization of the search strategies used in the databases and the synthesis of the final sample of data to be analyzed.

Figure 1:
Mental map synthesizing the search strategies used, which resulted in the final data sample.

Studies Characterization

The search of the descriptors in the related databases generated a sample of 1019 articles found, whose theme revolved around deafness, deaf people and the problems faced by this community regarding access to healthcare services, 97.64% (n = 995) articles found in PUBMED database; 1.86% (n = 19) found in the LILACS database and 0.49% (n = 5) found in SciELO. After reading the titles, summaries, body of the text in its entirety and exclusion from the studies that were repeated, the final sample consisted of 2.35% (n = 24) of the found articles, of these, 70.07% (n = 20) initially found through PUBMED database, 22.22% (n = 6) in the LILACS and 3.7% (n = 1) in the SciELO database. Thus, 20 articles in PUBMED, added to the six articles in the LILACS database and one article in the SciELO database formed the result of 27 articles, after the correction of the three articles repeated, the final sample had 24 selected scientific articles.

With reference to the year of publication of the selected articles within the final sample, presented in Table 2, it is noted that the publication was well distributed during the period in question, excepting the years of 2015 and 2016, in which no articles were selected .

Table 2:
Distribution of articles according to year of publication.

Regarding the design of the selected studies in the final sample, as proposed by Stillwell¹⁶, Table 3 presents the characterization of these according to their level of evidence.

Table 3:
Design of the selected studies in the final sample according to level of evidence n = 24.

Thematic Categorization

The textual reading of the articles allowed categorizing the studies in relation to the thematic approaches carried out by the authors-researchers regarding the obstacles encountered by the deaf in the access to healthcare. These categories reflect the conceptions, areas of interest in investigations and interventions in order to allow greater accessibility and availability of healthcare services to the deaf community. Thus, four thematic areas were evidenced, presented in Table 4, and here restated by the authors of the study as:

Category A. Communication barrier.

This was the most encouraged theme; present in 100% (n = 24) of the studies. These studies show that a large number of health professionals do not understand sign language and that these professionals face many difficulties in dealing with deaf patients, especially those who are not accompanied by someone who can communicate with them.

Category B. Humanization deficit in the professional-patient relationship.

In this thematic category, 25% (n = 6) of the studies showed that, normally, deaf patients do not attend unaccompanied consultations, precisely because they cannot communicate with the professional, who often is not prepared to attend this type of patient. One of the great premises of humanized behavior in healthcare is the direct relationship, without brokers, between professional and patient. This condition permeates the welcoming potential and bioethical principles of this relationship. Due to this, deaf people do not receive full attention in the healthcare services, demonstrating the deficit in humanization in the doctor-patient relationship.

Category C. Low knowledge of deaf people on the health-disease process.

Four papers (16.66%) had this theme addressed in their research, arguing that the deaf community has low knowledge about the health-disease process. These surveys point to an unfavorable condition of the deaf in terms of self-care knowledge, preventive guidance, and poor access to health education information.

Category D. Process of inclusion of the hearing impaired in society.

In this field of investigation, twelve articles were found, corresponding to 50% of the sample. This category shows how the social inclusion of the deaf occurs, informing the precariousness of the public policies directed to the deaf community and the difficulty of literacy in Portuguese due to the poor training of professionals who work with these people. Thus, the need for an up-to-date discussion on health literacy is emphasized.

Table 4:
Compilation of final sample articles.

Literature review

When analyzing the articles resulting from the research in the databases, it was observed that the sample in its entirety (n = 24) treated the communication barrier as an obstacle to the care of deaf people in health services. Although it is expected that the access to healthcare by deaf people will be facilitated by the presence of professionals capable of communicating with the deaf community through LIBRAS ¹⁵, the reality of health services is that, according to studies that interviewed deaf people and public health workers, there are not enough interpreters or people who can communicate effectively with deaf people ^5,12,18. Because of this situation, most deaf people need companions (usually family members) to get care in the health services.

Allied to the difficulty of communication that exists between professional-patients, there is the lack of knowledge about LIBRAS and its basic differences in relation to the Portuguese language, besides the fact of one being visual-spatial and the other oral-auditory. The LIBRAS does not have flexion, gender and alphabetical writing and there is topic-commentary structuring, while the Portuguese language has linear syntax and alphabetic writing ¹³. Thus, attempts to communicate in written form may not be efficient. Deaf people, for the most part, do not understand the information and there is no communication established with understanding, but only unilateral transmission of what the other interlocutor tries to express ¹⁸.

Among the consequences of communication difficulties and understanding of information, deaf patients delay the search for medical care, avoiding primary care, with the majority of consultations being performed in hospitals or in neighboring cities, and a higher prevalence of hospitalization in relation to the hearing ¹⁹. The communication barrier is important in the preventive aspect, since the difficulties of access to consultations with healthcare professionals postpone the initial care of diseases that could be carried out in a more lenient way, avoiding hospitalizations, which reflects the lack of knowledge regarding the prevention of several clinical conditions ^6,7,18.

In emergency situations, the difficulty of communication can be determinant for procedures to be unsuccessful, together with the stress of situations whose response needs to be rapid. The professionals of this segment require communicative ability to deal with deaf and low hearing impaired people ²⁷.

The obstacles encountered in the care of the deaf community, for the most part, are at the heart of the communication barrier. Among the consequences of this main obstacle, there is the deficit of the professional-patient relationship. Thematic found in six of the articles selected in the final sample, of extreme importance for the clinic. Patients will need an interpreter, family member or not, to whom a lot of crucial information will be transmitted, information often very particular to the individual, and may lead to the embarrassment of the patient in question ^6,18.

In addition to confidentiality, other principles of health ethics, such as patient autonomy and individualization of the person's treatment, may be neglected when there is the bias of a third participant mediating the information ⁵. Thus, the lack of knowledge of health professionals leads to distance from the link with patients, since recommendations or data regarding health conditions are not reported directly to those who need them and those who are seeking the service ^5,18.

Currently, it is known that the level of information that a population has, among other factors, directly influences the health-disease process ⁹. The perception of health problems, the understanding of health information, the adoption of healthy lifestyles and the use of health services, as well as the adherence of therapeutic procedures are aspects that are highly involved in the various ways in which the level of knowledge influences the general well-being of a population ^9,10.

From the revised sample (n = 24), it was found that in 16.66% (n = 4) of the articles, the authors observed that, in the case of deaf people, health information is too limited, mainly due to the difficulties of already mentioned in this discussion. In addition to communicational limitation, deaf people also present difficulties in learning Portuguese language, leading to educational, cognitive and sociocultural deprivation, which can lead, therefore, to the isolation of the individual ¹¹.

Deaf people have lower health conditions than listeners and access health services differently. Usually, health knowledge is acquired in different media, such as family, friends, radio, television, written materials, and the Internet. ^9,11. Thus, it is easy to deduce that deafness will limit the acquisition of this information in several sources, especially in the case of people who have become deaf before acquiring speech, since they will have greater difficulty with language, reading and writing, in general ^10,19.

As for the social inclusion process of the deaf community, in 50% (n = 12) of the articles, there is a deficit in public policies aimed at the integration of deaf people, as well as measures that optimize the communication of these groups with the rest of the population and access to different information media.

The deaf community presents itself as a sociolinguistic minority, and this is an important challenge for the SUS, especially with regard to communication barriers and difficulties in the humanized and global care of these individuals ^8,9. The care is performed, the problem / illness are resolved, and however, additional information that should be passed on to these people, such as explanations about the picture presented, preventive measures and other caring are not shared ¹¹.

There is a great lack of services when dealing with deaf individuals. The vast majority of the deaf population is excluded from school, making it impossible for them to learn basic and social contacts. ¹³. Even those who attend specialized schools for this type of disability present serious challenges in the process of literacy in Portuguese. It is still important to emphasize the role of the school in health information, an essential role in influencing healthy habits and avoiding harmful behaviors ^12,32.

The deaf community feels the need for greater inclusion in several activities developed for the general population, especially those that involve knowledge about health education, providing the user with certain autonomy to care for himself and even others ^11,18. As this inclusion hardly occurs, the reality that is presented is that the receipt of this information, most of the times, comes from the deaf community itself, accessing their deaf colleagues for health information, which reinforces the misinformation once in addition to being very limited knowledge, it may still contain doubtful or erroneous informational character. Therefore, attention should be paid to the need to train and qualify deaf people to become educators on healthcare ¹⁹. Audiovisual media do not have, for the most part, resources that make it possible for the deaf to understand what is being shown, making it difficult to receive information ^30,31. In a way, these exclusions result in inhibition of social interactions on the part of the deaf population, even within their own family ²⁰.

Therefore, it is important to highlight the importance of educational activities carried out by health professionals with the objective of assisting the community to change the healthcare situation of Brazilian society, based on practices that stimulate both a new sanitary awareness and democratization of public policies ^25,26. In this way, the visibility of the deaf community becomes one of the priorities in the social environment, reinforcing in this population its historical and political adherence, which opens the way for new enunciations and claims ^12,28.

Final comments

From the systematic analysis of the scientific studies, it was evidenced that the main obstacle faced by the deaf community in the access to healthcare is related to the linguistic barrier, due to several impediments, such as: lack of training of health professionals, financial difficulties to contract interpreters and absence of adaptations for deaf patients. In addition, studies have highlighted as an important hindrance the complexity of the inclusion of deaf people in the listening society, due to different ways of expression and socialization, resulting in a completely stigmatized individual who cannot adequately care in the health services. The deficit in the humanization of the deaf doctor-patient relationship was also pointed out in a significant number of studies, thanks to the presence of an accompanist or translator in the medical consultations, making care less integral, less secretive and, consequently, less humanized. The low knowledge of the health-disease process by the deaf individual, due to the marginalization of them in the campaigns and preventive orientations, and lack of access to health education information, was also pointed out by the reviewed articles.

There is a need for greater focus on deaf patients who use the health system so that it becomes truly universal and with equal access for all populations and communities, including minority ones. Currently, the patient with deafness does not receive adequate or satisfactory hospital or primary health care, with high rates of frustration and lack of resolution. It is critical that health professionals be properly trained to receive and care for the deaf patient through learning LIBRAS and understanding the deaf individual as multicultural and bilingual. Public campaigns for self-care and health prevention should be carefully carried out so that they can also be understood in a visual way, through captions or illustrative drawings. Small changes are capable of transforming the deaf patient's experience into health services, welcoming them within the health system in a humane way, and reducing the marginalization faced in the midst of a society shaped around the listening individual.

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Publication Dates

• Publication in this collection
  June 2017

History

• Received
  01 Dec 2016
• Accepted
  30 May 2017