ORIGINAL RESEARCH

Health service accessibility for the visually impaired

Thayris Mariano de Medeiros^I; Kátia Neyla de Freitas Macedo Costa^II; Tatiana Ferreira da Costa^III; Kaisy Pereira Martins^IV; Thayana Rose de Araújo Dantas^V

^I Nurse. Master in Nursing. Universidade Federal da Paraíba. João Pessoa, Paraíba, Brazil. E-mail: thayris_mariano@hotmail.com
^II PhD in Nursing. Professor of the Nursing Post- Graduation Program at Universidade Federal da Paraíba, Brazil. E-mail: katianeyla@yahoo.com.br
^III Nurse. Mestre em Enfermagem. João Pessoa, Paraíba, Brasil. E-mail: tatxianaferreira@hotmail.com
^IV Enfermeira. Master in Nursing and PhD student in the Nursing Post- Graduation Program at Universidade Federal da Paraíba. João Pessoa, Paraíba, Brazil. E-mail: kaisyjp@hotmail.com
^V Nurse. Intensive Care Resident Terapia. João Pessoa, Paraíba, Brazil. E-mail: thayana_dantas@hotmail.com

DOI: http://dx.doi.org/10.12957/reuerj.2017.11424

ABSTRACT

Objective: to examine health service accessibility for the visually impaired. Method: this qualitative, descriptive study was conducted with 24 visually impaired users of an institution in the city of João Pessoa, Pernambuco, from October to November 2013. Data were collected by recorded, semi-structured interview, and treated by content analysis. Results: the evidence was that people with visual disabilities experience a variety of difficulties in accessing health services, ranging from travel to the service through to communicating with health personnel, in breach of the principle of accessibility and undermining the quality of health care for these people. Conclusion: these barriers must be made more widely known, so as to build to awareness in society of the real problems caused by lack of accessibility for the visually impaired.

Keywords: Health services accessibility; visually impaired persons; health communication; health personnel.

INTRODUCTION

Disability is any loss or abnormality of a structure and/or psychological, physiological or anatomical function that generates incapacity to perform an activity, within the standard considered normal to be human¹. Among the several types of disabilities, we can stand out mental, physical and sensory, such as visual deficiency².

The data of the census conducted by the Brazilian Institute of Geography and Statistics point to the existence of 45.6 million of Brazilians with some disability, representing 23.9% of the population. Among them, visual impairment is the one that has the highest prevalence in the Brazilian population, with approximately 35.7 million people struggling to see. Of those, 29.2 million present some difficulty; 6 million great difficulty; and 528,600 can't see at all. The Northeast is the region with the highest percentage of the population that features at least one disability. Of this percentage, 21.2% said they have visual deficiency³.

As a result of their condition, individuals with visual impairment are more exposed to comorbidities associated to their deficiency, resulting in greater need of using health services to maintain their physical and mental integrity. In this scenario, the National Health Policy of People with Disabilities established strategies to take care of people with visual impairments with quality, adapting the physical space, the education and training of health professionals, since the basic care, on the family health strategy, up to the tertiary level care^1,4.

However, people with visual impairment will be able to use health services properly if the items to ensure accessibility to this population are fully ensure, which is the possibility and conditions to use with security and autonomy the spaces, urban facilities, buildings, transport and systems and means of communication by people with disabilities, comorbidities or reducedmobility⁴.

These rights provided by law, when not respected, trigger the appearance of barriers. These can be architectural, such as the absence of standardized handrails, absence of accessible toilets and without braille identification, absence of tactile signs on the floor, lack of maintenance of streets and sidewalks, storm drains without cover or protection grids, or social, which can highlight the difficulty in communication with the health professionals⁵.

The lack of preparation, awareness and encouragement of the Government, in order to empower healthcare professionals to meet adequately this population, can generate gaps with regard to performance and communication skills with people with visual disabilities. In this way, assistance from health services to these patients tend to develop fragmented, and little resolutive, opposed to the principles and guidelines established by the unified health system (SUS)⁶.

This study aims to contribute to aware the whole society, Governments and health professionals, so that the adapted resources are more available and architectural and/or social barriers are removed, so that these people may have access to health services and full social participation with autonomy. In front of this, the paper's objective is to analyze the accessibility of people with visual impairment in health services.

LITERATURE REVIEW

The term accessibility was first used in the 40s, initially described as a condition of mobility and elimination of architectural barriers giving access to people with disabilities to buildings and means of transport. However, this concept was expanded and, currently, the accessibility is characterized as a paradigm of inclusion, understanding that the barriers are more complex and goes beyond the question of mobility⁷.

Regarding visual impairment, this is understood as an irreversible situation of visual function. The person with this disability has their functionality impaired, which prejudices their ability to perform tasks. It is sorted into categories ranging from light visual loss to total absence of sight¹.

In this sense, a careful look at people with visual deficiency allows to realize the complexity and the difficulties faced by them, particularly in situations of illness, because not always the health services are designed to facilitate the access of those who present mobility and communication difficulties⁸.

METHODOLOGY

It is a descriptive, exploratory study with a qualitative approach, carried out in a non-governmental organization (NGO) in the city of João Pessoa-PB, of philanthropic and assistance character, being the first school for people with visual impairment created in the Northeast region of Brazil.

24 individuals with visual impairment participated in the study. The selection met the following inclusion criteria: more than 18 years old, linked to the institution referred to and accept to participate in the study by signing an informed consent (TFCC).

Data were collected from October to November 2013. To this end, we used the technique of recorded semi-structured interview. The first part contained characterization data such as name, sex, age, whether they have partial or total blindness and the cause of visual impairment, whether they were literate in braille, which health services attend more frequently and which network of health care they use, private or public. The second part presented eight subjective issues that met the objectives of this study.

For the analysis of the subject's speech, Bardin content analysis was used ⁹ and followed the following steps: first, readings were made to organize the material to be analyzed, retaking the initial goals of the research in face of the collected material, then data were added seeking to identify the categories, and soon after, thinking and interpretations of each category presented using the fragments of speeches of the research subjects.

It is worth mentioning that this research met the requirements set out in resolution 466/2012 of the National Health Council,¹⁰ that regulates research involving human beings, approved by the Committee of ethics in research with Protocol 0249/13 by CAAE No. 14545413.3.0000.5188. The identification of the participants was withheld, and people with disabilities identified by acronyms (P1 ... P24). This research does not entail any risk to the health of people with visual impairment.

RESULTS AND DISCUSSION

Of the 24 subject participants, the majority, (75%) were male. With respect to age group, 50% are between 31 and 50 years old. About partial and total blindness were 50% for both, being 58% with visual impairments from birth and 42% with disabilities due to other causes. One of the most common causes of blindness are diabetes, glaucoma and accident with a firearm. With respect to literacy in braille, the majority (79%) of the participants are literate, what can be justified by the fact that the institution carries out literacy of those people in that kind of language.

About health care network which they use frequently, 25% reported using only private network, 54% only public and 21% said they use both. It was noticed that most of the participants use the SUS as priority health network. Thus, it is essential that conform to the principles of universality, integrality of care, equity and social participation, offering accessibility, bond, continuity of care, accountability, and humanization¹¹.

From the speeches of the participants we listed the following categories: Displacement to health services; Physical accessibility to health services; Communication accessibility in health services; Communication with health professionals and changes necessary to improve accessibility.

Category 1: displacement to health services

This category was developed from the answers of respondents about how they go to health services, as seen in the following speeches:

I go on foot, is close to home, sometimes I go with my wife, but she is also visual impaired. (P20)

I go alone and by bus because it's far. (P17)

I go alone, walking or by bus, depending on the service, because some are far. (P13)

I always go with someone, because I can't walk alone, almost always my wife goes with me [...]I go by car because it is far. (P2)

According to these lines, we can realize that when it comes to displacement to the health service, there is a diversity of opinions that vary according to displacement time, the need of someone to accompany them and to the means of transport used. When analyzing the time spent, as noted in the lines of P17, P13 and P2, there is a considerable distance between the place of residence of such people and health services, configuring a difficulty in their displacement, because they need to use a means of transport.

This issue is related to the geographic accessibility, related to the spatial distribution of the resources, the existence of transport and location of health services, being a crucial factor for the effective use of the services, which may mitigate or magnify the access difficulties. The correct spatial distribution should be consistent for its proper use, as exemplified in the speech of P20 who mentions the independence of displacement, due to the proximity of the service¹².

Some of the patients feel the need of someone to accompany them, this can be explained by the lack of security to be in the social milieu alone, because of possible architectural and social barriers, or because of a very common attitude in relation to people with visual disabilities, that is the feeling of shame and overprotection of the caregivers and family. However, in some situations, people with disabilities induce people close to perform activities that could be performed by themselves, resulting in a negative impact on the independence of these individuals.

About the means of transportation used, it was possible to identify that they go walking and some of the subjects use public and private transport. To this end, the importance of the item transport, about spending and health quality, implies financial expenditure and difficulties in the use of health services¹³.

Category 2: Physical accessibility to health services

In that category, we found difficulties and amenities at physical access to health services by people with visual impairment.

[...] in the front there are many steps, that is a great difficulty, and those storm drains that sometimes are open and that we have the risk of falling into [...] I already fell twice in front of the station. (P19)

Sometimes there's a lot of people and with the noise the visually impaired have difficulty to identify where you're going, when you have someone to help it's all right, but when you don't have [...] (P18)

Entries are rugged, there are no railings, there's nothing that indicates the door, if you had those tactile floors would be great because we would go that way, and follow safely knowing that over there are no obstacles. (P15)

It is noticed that the physical structure of streets and sidewalks need to be improved, as well as the appropriateness of the health services entry with items that make these people' access easier, such as of tactile floors and handrails. Another important point, which highlights this fragility, is they need to ask for help to guide the way, mentioned in the speech of P18.

In a study conducted in the State of Rio de Janeiro with people with visual impairments, as well as this research shows, as major physical barriers were identified: the presence of holes; swerving public telephones; crossing the street, due to the absence of sound signaling and enough time for blinds; and taking the bus, due to the difficulties to stop it and to know the route¹⁴. Corroborating this study, a research with visual impaired people, with the overall objective of identifying the solutions that promote greater digital inclusion, it was concluded that the accessibility as a factor of social inclusion, according to the research participants, still needs a lot of improvement actions to be considered appropriate¹⁵.

Given this, we observe that the difficulties reported by the participants, act negatively in the use of health services by those people. In this sense, we can see the importance of accessibility to guarantee the principle of equality of the SUS, based on the idea that all individuals of a society should have equal opportunities to develop their health potential⁴.

It should be noted that only in the speech of two people, it was possible to identify facilities in the process of access to health services, in the case of aspects related to the visually impaired and the presence of someone accompanying them.

Facility is our intelligence, to use the cane and be a communicative person. (P22)

A facility would be wherever possible accompanied by someone. (P6)

In P6 speech, there is an interesting observation that shows everything is easier when they are accompanied, because when we consider the mobility difficulties these people have in a non-adapted environment, as mentioned in the lines, we realize how much easier would be with someone that can see to their side. On the other hand, to be always with someone is a negative point for the independence of these individuals, because they often loose the right to privacy and individuality, thus affecting the exercise of their autonomy¹⁶.

Other facilities mentioned by P22 relate to the characteristics and abilities of the individual, which brings the idea of the visually impaired person adaptation to the environment, which shows retreat in the progress of social inclusion, since the concept of inclusion changes the perception of disability from an individual issue to a social problem. The ideas shared by the people who have this problem are that the society has to be adapted to include everyone and not the opposite¹⁷.

Category 3: accessibility of communication in health services

It was observed in this category the lack of communication accessibility during the reception, even in the health services.

People are unprepared to care for people with visual impairment. When we arrive, the people ignore us [...] there should have someone to come along, to meet us. (P10)

I realize that there is still certain prejudice, when we say we are handicapped, they don't know what to say. (P7)

[...] Sometimes they don't understand that the visually impaired is a normal person, who also need help. (P4)

As noted in the speeches, there is no structure to meet people with visual impairment, from the entrance of the institution, with attitudinal barriers that contribute to a greater isolation or distance from the social conviviality. Some common examples of attitudinal barriers are the omission, ignorance, discrimination and prejudice, that can be easily detected in the lines of the subject of this research¹⁸.

In P7speech, it is evidenced the question of prejudice, which is the result of a socio-historical segregation construction of people with disabilities. However, currently, the society can and must seek to rewrite history, basing their actions on new paradigms, giving these people respect for the differences, autonomy, dignity and guarantee their fundamental rights¹⁹.

Category 3: Communication with health professionals

Health care professionals are responsible for the care and health education to meet biopsychosocial and spiritual needs of the patient, and an effective communication is crucial to establish a proper assistance. In this context, the category shows the communication of health professionals with people with disabilities.

Some receive us very badly, but others are very friendly, they are very careful to explain everything [...] talk to us. (P3)

The problem of the professionals occurs when we are accompanied, because they tend to ask the person who is on with us. (P15)

The problem is they ask the person next to me, instead of asking me [...] they think we are not capable, and with this behavior, they are becoming disabled and not us. (P20)

Communication is essential to socialization and understanding between people, and is an indispensable instrument to a qualified team of health assistance. Despite the communication in some situations is being well held, as mentioned in the speech of P3, it is noticeable that there are still many gaps in this interaction, because despite having great capacity of adaptation due to the use of the other senses, the person with visual impairment presents limitations in communication and writing, because some of what is written in ink is transcribed to braille. In addition, some professionals still express little skills, creating difficulties in establishing communication with these patients.

This issue can be easily identified on lines of P15 and P20, which addresses the fact that the professionals refers to the person with them, even when the question is related to the visually impaired person. This kind of situation cause severe consequences on the quality of health care, since the communication intermediation inhibits these people, and they end up keeping in silence about their actual needs²⁰.

In this perspective, it is important to develop basic attitudes that will enable the communication with people with visual impairments, such as: describe the environment and report the barriers on their way, pronounce the words clearly, be aware of the non-verbal responses, identify and ask the user to identify themselves to recognize their individuality ²¹.

Category 4: Changes needed to improve accessibility

To improve accessibility of health services, both in physical and social aspects, the respondents suggested, in this category, changes that are necessary for this advance.

Education investment because for me this is nothing more than bad manners. (P23)

What could really improve is investment, appropriate training for the professionals [...] (P17)

That the attendants respect more disabled people, because there are people who treat you badly, very rude, that turn their backs to us, we do not see, but feel when people act that way. (P13)

My suggestion is that people worry more about the matter of ramps, stairs, because not everyone can climb a ladder [...] that the pros are more prepared. (P4)

It is remarkable that the person with visual impairment has a partial or total inability to perform activities within the standards considered normal for any human being. However, we must pay attention to the fact that these people can perform any kind of activity as long as they have appropriate conditions and support for their characteristics. Therefore, we need to have an adapted environment, with physical access guaranteed, adequate training for people who work in health and more prepared professional services¹⁴, as mentioned in the lines of P4 and P17.

Investment in education and more respect for people with visual impairment are other claims cited in the lines of P23 and P13, calling attention to the fact that Governments and the society need to pay attention to issues that do not relate directly to them.

In this sense, it is essential that the issues related to people with any kind of impairment are not seen as a problem to be discussed only by those who have some person with these characteristics in their family. In this sense, it is essential that these issues are dealt with under the holistic-systemic perspective, in which the Government and the whole society contribute to changes, since the world should be seen entirety ²².

CONCLUSION

It is evident that people with visual disabilities experience several difficulties in access to health services ranging from their displacement to the service, through physical access and customer service, to communicate with health care professionals, breaking the precepts of accessibility and interfering in the quality of health care of these people.

The discussion of these items exceeds the mere presence/absence approach to obstacles to the use of health services, reaching a broader and very important topic in public health: equity in health. Equity is one of the doctrinal principles of the SUS, which guarantees equal health care, without prejudice or privileges of any kind, and the attention of the services network to the real needs of the population to be served.

In this perspective, we need the presence of the subject of accessibility for people with disabilities in schools and new undergraduate curricula of health area, encouraging the scientific production and ensuring the dissemination of knowledge and awareness of society about the real problems generated by lack of accessibility.

This study contributed to go deeper in the issues related to the accessibility of health services, subsidizing new research, allowing for reflection on measures aimed at the social inclusion of people with visual impairment, especially in the health care services, regardless of their limitations and free of prejudice.

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