INTRODUCTION

The discovery of acquired immunodeficiency syndrome (AIDS) and its etiologic agent, the human immunodeficiency virus (HIV), has become an important landmark in the history of global health in the late twentieth century. Despite the great progress made on scientific knowledge and therapeutic plans, this illness still has a major impact on public health¹.

Since the introduction of antiretroviral therapy (ART), the control in viral multiplication could be perceived as well as the slower course of the disease, generating a reduction in the associated morbimortality and allowing people living with HIV/AIDS (PLWHA) to have a higher expectation and quality of life, as the aggravation started to be considered as chronic and amenable to control²⁾⁽³.

The year 2016 had around 16 million PLWHA undergoing ART treatment worldwide, with the expectation of reaching 30 million by 2020⁴. Currently, Brazil has about 450 thousand people using ART offered by the Unified Health System. This represents an increase of 58.15% compared to 2011, when 284,390 treatments were provided⁵.

Disease control requires permanent clinical follow-up and continuous use of antiretrovirals⁶. Adherence is essential for successful treatment, but it is usually influenced by the association of several factors, inherent or not to PLWHA⁷. Thus, among the universe of factors that interfere with adequate adherence to effective antiretroviral therapy, the lack of knowledge or lack of information regarding its use and the risks of non-adherence stand out as significant variables⁸. This is due to non-adaptation to therapy, depression and psychological stress, besides the adverse effects that the medications cause. However, this scenario can be reversed by health professionals responsible for delivering and monitoring the therapy⁹⁾⁽¹⁰.

Considering this aspect, care network professionals - as health promoters - should lead the exchange of knowledge in a clear way and stimulate the emancipation of subjects who make use of ART, so that they can decide on the changes of attitudes and behaviors to improve the quality of life, through the promotion of active and participatory behaviors, valuing meetings that prioritize this dialogue¹¹. Knowledge of the therapeutic scheme by the patient is the basic condition for the treatment progression¹².

Knowledge starts with the formulation of an idea about something, from the construction based on sociocultural values, previous experiences and critical reflections; it is a dynamic process in permanent construction¹³.

Failure in understanding the information and/or scarcity of guidance about ART lead to gaps in the knowledge of PLWHA, and this situation implies the possibility of irregular consumption of antiretroviral medicines or the intake of insufficient doses. As a result, the success of therapy can be compromised, and treatment options limited, prompting the transmission of multiresistant viruses with consequences for the patient and for public health^2)(3)(14. In this sense, the present study aimed to analyze the knowledge of PLWHA undergoing ART.

METHODS

This is a quantitative, descriptive, cross-sectional study conducted in two Specialized Care Services (SCS) on HIV/AIDS in the municipalities of Caruaru and Garanhuns, located in the Agreste region of the state of Pernambuco, Brazil.

The study included people aged 18 years and older, both men and women, who had been on ART for at least 1 year, and who attended services for viral and CD4 load monitoring. Mentally disabled people and pregnant women were excluded.

The sample was of the non-probabilistic stratified type. The sample size was determined considering: a) the population size of each SCS (SCS "A" with 860 people on ART and SCS "B" with 85 people on ART); b) the margin of error was of 5%; and c) the confidence level was 95%. The percentage of sample losses in both calculations was 20%.

The sample calculation resulted in 192 people in the SCS "A" and 64 people in the SCS "B", totaling 256 people. Calculations were made using the EPI-INFO® in 6.0 version.

Data were collected between May and August of 2013. Two instruments were used in the collection: a form for sociodemographic data and medical records (antiretroviral medicines prescribed); and a questionnaire to verify knowledge about ART, which was elaborated based on two studies¹⁵⁾⁽¹⁶. The questionnaire was composed of six questions on the user's knowledge about the therapy (the answers were scored and later used to establish the level of knowledge); and one question (non-scored) to know the source of the information obtained about the therapy. The six questions involved general knowledge regarding antiretrovirals, their action, indication, duration of treatment, adverse effects and precautions, names of the drugs that make up the ART, dose and frequency prescribed by the doctor, as well as the sources of information about ART.

Regarding the names, dose and frequency of the antiretrovirals, correct answers were considered when agreement between all the declarations of the patients and the information in medical records could be identified, even when different nomenclatures were used for the same medication (trade name and acronyms, for example). At the time of the interview, the respondent was not allowed to consult the medical prescription or packaging of the medication or any annotation he had at hand, in order to avoid bias in the study regarding knowledge about the prescribed therapy.

The score was developed through the studies of Ceccato et al.¹⁶ and Silva, Schenkel and Mengue¹⁵. Different scores were assigned for each question, considering its relevance for the safe use of medicines at the outpatient level. It was considered safe the use of ART that does not cause harm to the health and well-being of the patient¹⁶ - Cuadro 1.

Descriptive statistical analysis was performed, using the absolute and relative frequencies. For purposes of statistical association, the variable level of knowledge was considered as dependent and classified as a qualitative, of ordinal type. Sociodemographic variables and the source of knowledge about the general ART actions were defined as independent variables and classified as qualitative variables of the ordinal type (age, family income, schooling) and nominal type (gender, religion, race/color and source of knowledge about the general ART actions). The Pearson's Chi-square test, the Fisher's exact test and the Likelihood test were used to compare qualitative variables. A margin of error of 5% and reliability of 95.0% were considered, and the SPSS® program (Statistical Package for the Social Sciences) version 21.0 was used for analyses.

The study complied with the national ethical norms for research involving human beings in Resolution 466/2012 of the National Health Council, with approval from the Research Ethics Committee of the Oswaldo Cruz University Hospital, Opinion n^o. 205,799. All participants were informed about the purpose of the study, and those who accepted registered their agreement in the Free and Informed Consent Form.

RESULTS

Concerning the sociodemographic characteristics, it was found that the majority of the interviewees (n = 136) were male in the age range of 30 to 49 (n = 164). Age extremes ranged from 18 to 87 years with standard deviation of 12 years and mean of 42 years. As for the self-reported race, brown people prevailed (n = 139). Only 56 PLWHA had completed high school or higher education, with people with low level of education representing the majority, including 48 illiterate participants. Regarding family income, the majority of the evaluated people (n = 158) received up to one minimum wage (MW) - Table 1.

Table 1 Distribution of patients of the Specialized Care Services "A" and "B" (Agreste Region of Pernambuco) according to sociodemographic profile - 2013 

(*): Significant difference at 5.0% level.

(1): According to the Pearson's Chi-Square test.

(2): According to the Fisher's exact test.

(3): According to the likelihood test.

Table 1 also analyzes the association between the level of knowledge and the sociodemographic profile in relation to age, gender, religion, schooling and income, and the association among them. It is observed that 51.2% of the PLWHA had a level of knowledge about ART classified as regular, with prominence in this classification of the age group of 50 to 59 years (78.1%), females (54.2% ), Spiritist religion (70%), illiteracy (54.2%) and family income of more than one minimum wage (59.2%). In turn, 33.6% had a level of knowledge classified as insufficient, with prominence here of the age group of 30 to 39 years (35.1%), females (35%), evangelical religion (42.6%), illiteracy (45.8%) and family income of less than one minimum wage (39.2%).

Age, religion, schooling and family income were associated with the level of knowledge about ART, being significantly associated with the dependent variable (p 0.05).

Table 2 shows the distribution of PLWHA according to the general knowledge about ART (action, indication, duration of treatment and precautions). Regarding knowledge about the action of ART, 27.7% of PLWHA did not know or erroneously responded that the medication acts by totally destroying HIV. In contrast, when questioned about the indication for ART, the majority (82%) answered that this therapy is used for the control of HIV, thus protecting the body from opportunistic diseases.

Table 2 Distribution of people living with HIV/AIDS from Specialized Care Services "A" and "B" (Agreste Region of Pernambuco) according to general knowledge about ART (action, indication, duration of treatment and precautions) and side effects caused by its use, - 2013 

Regarding knowledge about the duration of ART treatment, 12.5% of the interviewees reported that the treatment lasts until normal test results are obtained, 71.1% reported that the treatment lasts forever and 16.4% they did not know. Regarding knowledge about precautions with the use of other medicines, 65.6% answered that they can use other medicines, provided they do it under medical supervision. On the other hand, 9.4% did not know, and 25% said they could use any other medicine regardless of medical advice.

Regarding the knowledge about the side effects caused by ART, gastrointestinal effects were indicated by most PLWHA (69.1%), followed by psychiatric ones (39.8%). Neurological effects, metabolic effects and cardiovascular effects were the least known by the interviewees, 9%, 5.1% and 4.7%, respectively. Still, 17.6% reported that they did not know the side effects that ART could cause.

Table 3 shows the distribution of PLWHA, according to knowledge about the prescribed ART. Only 13.7% of the population knew the name of the medicines that make up the ART. Regarding the dose(s) and the frequency of use of ART, these were known by the majority of the population, 80.1% and 82.4%, respectively.

Table 3 Distribution of people living with HIV/AIDS from Specialized Care Services "A" and "B" (Agreste Region of Pernambuco) according to knowledge about ART - 2013 

(1): Percentage values were obtained from the total number of 256 patients analyzed.

(2): The name(s) of the antiretroviral(s), and the prescribed dose(s) and frequency were considered correct when it was possible to identify agreement between all the declarations of the patients and the information in the medical records, even when different nomenclatures were used for the same medication (trade name and acronyms, for example).

Table 4 shows that the majority of the interviewees reported to have received guidance on ART from the doctor (92.9%) and other professionals (60.2%) of the outpatient clinic - SCS. TV programs, other people who use the therapy and research on the internet obtained the following percentages: 28.1%, 24.6% and 21.1%, respectively. Guidance from nurses of the outpatient clinic - SCS (10.5%) and health education groups (6.6%) were not prevalent.

Table 4 Distribution of adults living with HIV/AIDS from Specialized Care Services "A" and "B" (Agreste Region of Pernambuco) according to the source of information on antiretroviral therapy - 2013 

(*): Significant difference at 5.0% level.

(1): According to the Pearson's Chi-Square test.

(2): The values were obtained based on the total number of 256 patients analyzed.

The comparison of the distribution of general ART scores between the sources of information was significant in relation to the outpatient service’s doctor, other people who use the therapy, internet search, magazines and pamphlets, outpatient service’s nurses and health education groups, indicating that they are associated with knowledge on ARVT (p0.05).

DISCUSSIONS

It was found that the sociodemographic variables of the individuals are similar to the studies already produced in Brazil¹⁷⁾⁽¹⁸ and compatible with the data presented in the last epidemiological bulletin of the Ministry of Health in 2014¹⁹.

The early initiation of the use of antiretroviral therapy by PLWHA has been one of the reasons for the success of Brazilian policy, especially in the international context. The country has always followed the world's innovations, and today it offers three-in-one pills (3TC/d4T/NVP) as first-line choice. The challenges remain, and the country is still on the front line in adopting innovative technologies for diagnostic, prevention, treatment and quality care²⁰.In this context, it is known that adherence to ART is a positive predictor of quality of life and survival of people living with HIV/AIDS, mainly for improving immunity, controlling viral replication, slowing the progression of the disease and preventing opportunistic diseases. Despite all the benefits, many PLWHA have difficulties in adherence, related to the clinical repercussions of the treatment, difficult access to the service and, consequently, to medicines, social stigma against the disease and lack of knowledge about ART ⁽²².

The present study ratified a Brazilian study that evidenced that the educational level of PLWHA is an important factor for the quality of the knowledge about HIV/Aids. Thus, high schooling represents a better level of knowledge regarding ART²².

Another study reports that when patients became aware of their health-disease process, it was possible to increase survival with the use of medications, to live with quality and to feel motivated to make proper treatment. Thus, a routine discussion between health professionals and users about the fact that HIV/AIDS is a chronic illness, incurable to date and requiring daily, continuous and permanent treatment is of paramount importance. In addition, the explanation of the mechanism of action of the medication, indication of ART, drug interaction, as well as the advantages of adherence to treatment, aiming at a greater involvement of users in the maintenance of their health, is of great value²³.

Furthermore, it was possible to observe that the majority of respondents (72.7%) had general knowledge about ART. Such a finding may favor the country in meeting certain established criteria of the "90/90/90" target, namely: 90% of PLWHA knowing their serological status, 90% of PLWHA following ART and 90% of people on ARVT, so as to reach viral suppression by the year 2020. The correct knowledge about ART is a recognized favorable factor for the follow-up of the treatment and inhibition of viral replication²⁴.

The difficulties encountered in the use of ART highlight the decision of HIV-positive people to change their lifestyle, to manage and accept certain adverse effects. They raise the need for support actions by the health team that may bring positive contributions to the reality of each individual²⁵.

As complaint of side effects, most of the interviewees highlighted the presence of gastrointestinal problems such as vomiting, nausea and malaise, ratifying other studies ^23)(25)(21. The presence of side effects may contribute to inadequate adherence.

In this study, it was evidenced that the vast majority (86.3%) of the respondents did not know the names of the drugs that make up the prescribed ART regimen. Regarding the lack of information, some studies show that around 50% of the information provided by the doctor during the consultation is quickly forgotten, but those patients whose doctors are always testing the patients about their degree of knowledge of the recommendations given are much more likely to keep the information than those whose doctors did not mind with this aspect²⁶. Based on this evidence, nursing assessment and subsequent interventions, such as guidelines on forms of contagion, name of medications, treatment, prevention against illnesses, and HIV/AIDS evolution is necessary, besides the social and psychological support, in order to minimize the negative effects of the disease on seropositive individuals and thus obtain better results and helping the living with a chronic disease²⁷.

The focus of nursing is directed to the realization of nursing consultations, starting from the sharing and construction of knowledge in a joint and non-vertically and integrated manner, to stimulate adherence to treatment, promote the knowledge about ART and the adoption of healthy life styles in order to minimize side effects, thus aiming to improve the PLWHA's quality of life. Accordingly, it is necessary to plan the consultations that aim at the sustainability of the changes over time so that the transformation in life habits be initiated and maintained²⁸.

In this context, Almeida²⁹ describes the importance of nursing consultation for this clientele, pointing that a study carried out at the clinic of infections of the Clinical Hospital of Porto Alegre that involved the creation of an adherence program in which the nursing consultation was included in the process, there was an improvement among patients in the coping with the disease, leading to increased levels of adherence.

Studies carried out in several countries have shown that in order to produce good quality information, it is necessary that this be done taking the patient's needs into account, and that these patients be involved in the process along with the multidisciplinary health team²⁶.

It is also observed that there is a low demand for nursing consultations in the SCSs and that guidance on ART comes, for the most part, from the medical professionals who perform outpatient care. In this sense, it is known that the link in SCS starts in the hosting, being this fundamental for adherence to the treatment. Within this perspective of reception, the nurses are the multiprofessional team members that play a fundamental role in the first consultation, when the user-professional-service link is established³⁰. Macêdo et al.³¹ report that the nursing consultation is used to provide guidance and information about the disease, as well as to the encourage the patient's to participate in the care process, allowing nurses to place themselves in a differentiated role.

SCSs, as health services, are privileged and strategic places to promote health education actions aimed at humanized knowledge construction about the importance of adherence to ART and to the routine of treatment in the patients' lives; it is essential to contemplate health education for the prevention of illness and the promotion, recovery and maintenance of the health of this population²³⁾⁽³². Nurses can also be the articulators of educational actions, as can offer a service in which the PLWHA feel welcomed, so that the trust in the team is established, and a link between both parties, each of them understanding their responsibility for the therapy³⁰.

CONCLUSION

It is possible to mention that the knowledge about the therapy is an aspect that can contribute to an inadequate adherence to treatment and that must be worked by the health professionals who work in the SCSs, as well as the nurses, through guidance addressing treatment-related mechanisms that may interfere with adherence: action, indication, duration, precautions, and adverse effects of antiretrovirals.

In addition, the lack of knowledge or confusion in the names of the antiretroviral drugs mentioned in this study are important findings for non-adherence to wrong treatment or medication, which poses a risk to the safety of PLWHA, as regards the possibility damage to health.

On the other hand, PLWHA had a low percentage of information/knowledge about ART, which may have been resulted from the guidance given by nurses of the SCSs. This fact may be related to the routine of the service, where the clinical and therapeutic follow-up of people undergoing antiretroviral treatment is almost always performed by the physician. Therefore, the fact that the low percentage of reference to ART information mentioned by the people undergoing treatment comes from health education groups constitutes a vast field for action, given the importance of promoting these activities to maintain the care with treatment and to improve the PLWHA's quality of life.

Nurses and other professionals working in SCSs can use strategies such as the implementation of health education groups in outpatient services, as there are no groups in the services studied, with the prospect that, through them, adequate knowledge about ART be promoted so links between PLWHA and the service be strengthened.

We hope that this study contributes to the comprehension of HIV/AIDS and serves for comparison with other studies that address the issue of knowledge about ART by PLWHA in order to provide subsidies for the strengthening of actions that promote the rational use of antiretrovirals and thus patient safety.