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A study on aids a life and death issue

ABSTRACT This qualitative descriptive study, guided by the Social Representations Theory, aimed to describe the content of the social representations regarding the Acquired Immunodeficiency Syndrome AIDS for seropositive individuals in outpatient monitoring of the public health network and to analyze the interface of the social representations of AIDS with the quotidian of the individuals living with human immunodeficiency virus HIVespecially in the adherence to treatment process Interviews were conducted with 30 seropositive individuals and the manual content analysis technique was used.

From the analysis, six categories emerged that re-translated the quotidian of seropositive people permeated by the stigma, prejudice, struggle for life and the need for the continuous use of antiretrovirals.

AIDS was assimilated to chronic diseases such as diabetes, showing a trend of transformation of the social representation of AIDS, substituting the idea of death, with life. It is concluded that people living with HIV are more optimistic due to effective treatments for the control of the disease. Introduction AIDS represents one of the serious public health problems, characterized as a global epidemic with rapid dissemination and escalation.

In this context, AIDS demands an urgent response and the need for economic, political, social and psychological resources that face a problem of such magnitude.

At the beginning of the epidemic, it was considered, in the reified knowledge, a disease that affects a restricted group, the so-called "risk group", which was constituted partly by homosexuals, hemophiliacs, Haitians, and heroin users, as well as sex workers.

  • In 2016, WHO released the second edition of the Consolidated guidelines on the use of antiretroviral drugs for treating and preventing HIV infection;
  • It's kind of hidden to be seropositive, it is very difficult, no one can say that you are seropositive if you are not to be discriminated against, you feel discriminated against, you're diseased, you're a prostitute, you're a shameless travesty;
  • In relation to condom use, the problem becomes more visible when related to people with stable relationships.

The use of this expression would mark the historical, cultural, imaginary and social construction of AIDS 1-2. Subsequently, the epidemic was also associated with "risk behavior".

This concept was substituted by that of vulnerability, since the chance of exposure of people to the human immunodeficiency virus HIVand the resulting illness, is not due to a set of individual, collective and contextual aspects 3.

Considering the profound inequalities of the Brazilian society and the spread of HIV infection in the country, AIDS is reveled as an epidemic of multiple dimensions that is, over time, undergoing significant transformations in its epidemiological profile, and is today marked by its incidence in the female, heterosexual, rural, aging, lower educated, and poor populations 1-2. However, in nearly three decades of the epidemic, progress is evident concerning the treatment of this disease because, with the advent of the antiretrovirals, there has been a significant improvement in the quality of life of people living with HIV.

For this reason, AIDS now presents the characteristics of a chronic disease 4. In reflecting on its dissemination, the transformations of this epidemic in its historical context must be considered, especially in relation to the forms of transmission, the trends of disease vulnerability, and also the meanings constructed to face this reality.

Giving voice to these subjects, who motivate and receive specific health actions, is a means which permits learning about their anxieties, fears, images, difficulties, attitudes, barriers and feelings constructed in the face of a diagnosis that constitutes a social phenomenon that has undergone transformations over time.

Knowing the representations of the syndrome and its influence on the various facets of experiences constructed in the quotidian of these subjects will contribute to improving the a study on aids a life and death issue of life of those living with HIV, through more adequate and satisfactory health actions. In this sense, the following aims were adopted: This theory can be defined as socially produced and shared knowledge with a practical aim that contributes to the construction of a common reality of a social group.

It may be equally designated as common-sense or naivety, i. The research was developed in light of the ethical provisions presented as development standards and guidelines for research with human subjects contained in Resolution 196 of October 10, 1996, of the National Health Council NHC 6having been approved by the Ethics Committee of the Municipal Health Secretariat of the municipality of Rio de Janeiro through Protocol No.

A total of 30 users of the institution, 14 male and 16 female, participated in the study, all of them over 18 years of age, in outpatient treatment for at least 6 months from diagnosis and using antiretrovirals. The users were invited to participate in the survey at random, while in the waiting room awaiting a routine medical consultation. After acceptance, the Terms of Free Prior Informed Consent was explained and signed as a precondition for the performance of the interview.

The number of subjects was established according to the consensus among researchers in the field of social representations as the minimum needed to recover a cognitive and social construction regarding an object. For the data collection, which occurred in April and May 2009, the semi-structured in-depth interview technique was used, recorded on an electronic device.

The length of each interview varied between 30 minutes and 1 hour. All participants were capable of interacting with the researcher, as well as answering the questions. Next, the interviews were transcribed and analyzed for their thematic content 7-8. Description and discussion of results In the process of analysis 2843 units of analysis UA were identified, distributed in 265 themes, resulting in six categories, which are presented below.

Memory elements of the anchoring of AIDS in society and its transformation process One of the anchors of AIDS presented related to two social groups, homosexuals and promiscuous people. Therefore, there is still a predominance of the representation associated with the so-called risk group, although this concept has already been replaced by that of vulnerability, as previously highlighted 3,9.

  1. Furthermore, even the development of the AIDS virus in a laboratory was mentioned and was associated with the plague and syphilis. From this perspective, in the present study, the year of HIV diagnosis was associated with this domain for the reason that people with recent discovery of the infection do not accept the fact of the disease, which leads to discouragement with life and with health care, which implies low scores.
  2. As the number of deaths due to OIs and other AIDS-defining conditions has fallen, the proportion of deaths due to all other causes has consequently risen. This implies commitment in the sexual activity domain on the quality of life, and the fact that having no work links and alcohol consumption further strengthened to a worse quality of life.
  3. The understanding, on behalf of the nurse, of the contents of this representation, as well as of its dynamicity, will allow their actions, especially educative ones, to have more relevance in the life and the quotidian of seropositive individuals. However, it is emphasized that religion can often lead them to withdraw from the therapy because they believe they are or will be cured.

The origin of AIDS, for the social actors of the study, was attributed to foreign countries, especially to Africa and to the African monkey, considering the possibility of men having had intercourse with these animals. Furthermore, even the development of the AIDS virus in a laboratory was mentioned and was associated with the plague and syphilis.

The study demonstrated that the anchoring process that occurred early in the epidemic remains present in the social discourse in current times. The subjects exhibited such concepts referring to their social memories, in the midst of which remains a set of representations that circulate in society and configure some of the characteristics of their representations, namely, to be influenced by the media in their cognitive reconstruction.

Another anchoring process present in the representations of this group reaffirms the connection of AIDS with diabetes, configuring the syndrome as a chronic, non-fatal disease that can be controlled with drugs available through governmental programs.

In a certain way, the representation of death is overcome and replaced by a space for the representation of life and of survival, as expressed in the following quote: I take my medicine every day and get on with life.

For me it is like being a person who has diabetes or other diseases and so you are required to take the medication subject 1. The subjects said they had sometimes adopted compromising sexual behavior, which culminated in their seropositivity, demonstrating a strong sense of guilt. The themes that follow describe this situation: The following statement portrays this reality. I had a very sexually active life. I went out with several partners, before I found out.

I had several partners. When I knew, I already had a steady partner, I was already living with him, and I stayed with him, but also I did not tell him.

  • AIDS was assimilated to chronic diseases such as diabetes, showing a trend of transformation of the social representation of AIDS, substituting the idea of death, with life;
  • This conjecture suggests that the interviewees were conscious of the treatment, considering that it is for the rest of their lives, similar to a chronic disease such as diabetes.

We stayed together for seven years, and we never used condoms, I hid when I found out. I still did not say anything to him subject 2. In relation to condom use, the problem becomes more visible when related to people with stable relationships. It was observed in another study that, in stable relationships where trust exists between the partners, condom use is judged to be unnecessary, because they feel safe from the risk of HIV infection.

The study also indicates the perpetuation of the concept of the risk group, making them believe, consequently, that they are immune to HIV infection 10. Like me in my case. I am a married woman, a decent, correct woman.

I married my first boyfriend, that whole thing.

Mortality Trends: Toward a New Definition of AIDS?

So I thought it could not happen to me. However it happened, right? The quotidian life of seropositive people permeated by the process of vulnerability to HIV The recognition of the individual vulnerability when faced with HIV influences, above all, the human practices and behavior.

The content addressed by the subjects were varied, however some points were emphasized, considering their individual and social consequences. Ignorance of not knowing what it was, lack of information and lack of knowledge, I had no feelings, I never thought about it, I did not worry and ignored the issue. In this sense, one of the problems of the concept of risk behaviors is that prevention work is replaced by a culpable and individualistic perspective. If a person is infected with HIV, it is because they adopted risk behavior, hence the "fault" is theirs.

In this case, the fact that the modes of transmission of a disease sometimes have reasons which are more social than individual are not taken into account. Therefore, these issues are not resolved by seeking to blame people for attitudes held or by labeling individuals as role models, but rather, by comprehending the motives that condition people and groups that are in situations which make them more vulnerable to HIV infection 12. Among the interviewees there also appeared the representation of the individual vulnerability, in which they considered that all people are susceptible to acquiring HIV.

The themes that reflect this perception are: AIDS has spread to most Brazilians; both in the poor and in the rich; and anyone can contract it nowadays, married women, the elderly, and children already born.

These themes, however, were expressed by a small group of interviewees, which may indicate a representational sub-group in relation to the vulnerability and the individual and social risks related to the syndrome. The only people who have this kind of disease are homosexuals, they are depraved people subject 4. Discrimination and concealment in living with HIV Seropositive people present the concealment of the disease as a strategy for social survival.

Thus, they can continue life as normal people without being accused or discriminated against, either within the family, social or work environments. A study on aids a life and death issue the latter, the concealment of HIV is a way to maintain the job, since, having their secret revealed, the individuals run the risk of suffering prejudice.

The themes that portray the process of concealment were varied, among them: It was observed that these individuals find it difficult to feel socially accepted, therefore the omission of seropositivity is justified by the fear of being judged.

  1. Long-term studies show that PIs as a class are associated with metabolic side effects that were not seen in initial clinical trials, including unfavorable blood lipid profiles elevated triglycerides and LDL "bad" cholesterol, and low HDL "good" cholesterol , insulin resistance, and diabetes mellitus -- all of which are known risk factors for atherosclerotic heart disease hardening of the arteries in the general population. Those who do typically fall into one of the following categories.
  2. Innovation for acceleration looking towards the future. Interventions for impact covering the range of services needed.
  3. ART does not cure HIV infection but suppresses viral replication within a person's body and allows an individual's immune system to strengthen and regain the capacity to fight off infections. In relation to condom use, the problem becomes more visible when related to people with stable relationships.

In this context, AIDS, to the deponent that follows, can be seen as "punishment" and that "the person did something to deserve it" because they would be among those belonging to the "risk group". Thus, the image of AIDS remains directly associated with deviant behavior. The word is hidden.

Transmission

It's kind of hidden to be seropositive, it is very difficult, no one can say that you are seropositive if you are not to be discriminated against, you feel discriminated against, you're diseased, you're a prostitute, you're a shameless travesty.

Outsiders think the person who has AIDS deserved it. Seropositive people opt for concealment of the serology, considering that HIV has, in its metaphorical history, a moral and reprehensible judgment that interferes in the private life.

  • This concept was substituted by that of vulnerability, since the chance of exposure of people to the human immunodeficiency virus HIV , and the resulting illness, is not due to a set of individual, collective and contextual aspects 3;
  • The social stigma and prejudice are attitudes stimulated, above all, by the fear of contagion and the lack of information, and these raise discomfort and suffering in seropositive people who are targets of social contempt;
  • This research team defined deaths related to antiretroviral therapy as non-HIV-related;
  • Survival of persons with and without HIV infection in Denmark, 1995-2005.

This reveals an obscure, illicit side and exposes the bodily pleasures that exceeded, in most cases, the social control 13. This process increases the fear and, above all, the isolation of those affected.

Furthermore, the stigma is extended to the family and friends 14-15. However, the experience and knowledge gained has led these people to adopt a different view when it comes those infected with HIV. A change was noticed in the attitudes and practices toward seropositive people, due to not incorporating the prejudice to the discourse after being diagnosed and to living with HIV in their quotidian.

However, the biased attitude of society imposed on seropositive people prejudices them substantially, causing serious disorders, such as social isolation, loss of the will to live and therefore to seek stimuli for treatment. The prejudicial acts also lead to processes related to the decrease of self-esteem and the difficulty of developing an emotional relationship. In this sense, stigma is a term used in reference to an deeply derogatory attribute and can also be considered a defect, a weakness or a disadvantage, constituting a specific discrepancy between the virtual social identity and the actual social identity 16.

As a consequence, the study subjects presented a tendency to withdraw from or guard themselves against the social life after the discovery of the diagnosis. In the expression would not be able to have more relationships with people subject 6an image of isolation can be observed as something already determined by society or as a form of punishment for having contracted HIV.

The social stigma and prejudice are attitudes stimulated, above all, by the fear of contagion and the lack of information, and these raise discomfort and suffering a study on aids a life and death issue seropositive people who are targets of a study on aids a life and death issue contempt. The themes that reflect this representation are: Thus, an alternative presented by some social actors of the study to cope with such a situation was to seek relationships with other seropositive people like them, connoting the idea that there are two distinct groups, "different with different" or "the same with the same".

The process of adherence to treatment in the quotidian of seropositive individuals Although AIDS is an incurable disease, there are now treatments that increase the expectation and the quality of life of people living with the disease. It was observed that one of the great motivators of adherence, in this scenario, is the fact that the users believe in the positive outcome of therapy.

However, for the subjects, a dichotomy exists around the therapy. After HIV, life and health depend on the use of medication and on treatment and therefore, the abandonment of these ultimately leads to disease progression and, consequently, death.

Self-care is also related to living long and well, and the lack of it, likewise, results in disease and death. The perceptibility regarding the aims of the treatment becomes a favorable factor in the adherence to antiretrovirals. The interviewees demonstrated that they comprehend the importance of the correct use of antiretrovirals, but there are various factors that influence the appropriate use of these medications, often leading to the abandonment of the treatment.