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ORIGINAL RESEARCH

 

Social representations of HIV/AIDS for people living with the syndrome

 

Renato Martins de Oliveira BragaI; Thiago Pereira Lima II; Antonio Marcos Tosoli GomesIII; Denize Cristina de OliveiraIV; Thelma SpindolaV; Sergio Corrêa MarquesVI

I Nurse. Master in Nursing by the University of Rio de Janeiro State. Brazil. E-mail: renatormob@yahoo.com.br
II Nurse. Graduate in Nursing by the University of Rio de Janeiro State. Brazil. E-mail: th.lima20@gmail.com
III Nurse. Ph.D. Full Professor of the Department of Medical-Surgical Nursing of the Post-Graduate Program in Nursing of the Nursing School at the University of Rio de Janeiro State. Brazil. E-mail: mtosoli@gmail.com
IV Nurse. Ph.D. Full Professor of the Department of Fundamentals of Nursing and the Post-Graduate Program in Nursing of the Nursing School at the University of Rio de Janeiro State. Brazil. E-mail: dcouerj@gmail.com
V Nurse. Ph.D. Associate Professor of the Department of Fundamentals of Nursing and the Post-Graduate Program in Nursing of the Nursing School at the University of Rio de Janeiro State. Brazil. E-mail: tspindola.uerj@gmail.com
VI Nurse. Ph.D. in Nursing. Adjunct Professor, Department of Nursing Fundamentals and Post-Graduate Program in Nursing, Nursing School at the University of Rio de Janeiro State. Brazil. E-mail: sergiocmarques@uol.com.br
VII Research developed with the support of the Conselho Nacional de Desenvolvimento Científico e Tecnológico. Universal Announcement 2008, process 303981/2008-3 and the Research Productivity Grant 2009, process 305629/2009

DOI: http://dx.doi.org/10.12957/reuerj.2016.15123

 

 


ABSTRACT

Objective: to analyze the contents of representations of HIV/AIDS for people living with the syndrome. Method: this qualitative study was guided by Social Representations Theory (SRT) on a process approach. The study participants, 30 HIV-positive patients, responded to a semi-structured interview at a municipal public hospital in Rio de Janeiro, between June and December 2010. The transcripts were treated by content analysis. Results: three categories emerged: meanings of AIDS (feelings and definitions); images of AIDS (incurable disease, death and Cazuza); and dealing with AIDS (approaches by various strategies). Conclusion: representations of HIV/ AIDS have changed as regards how people living with the syndrome deal with the diagnosis.

Keywords: Nursing care; acquired immunodeficiency syndrome; HIV; nursing.


 

 

INTRODUCTION

In the 1980s, the world was faced with Acquired Immunodeficiency Syndrome (AIDS), perceived as one of the morbid entities most feared by society. Over time, social representations of the virus have been identified as aggressive and widely contagious, surrounding people living with human immunodeficiency virus (HIV) and AIDS (PLHIV) from prejudice and fear. These feelings in society, in general, are manifested among health professionals who daily deal with patients, due to the greater risk of contagion and accidents with puncture-sharp materials and occupational risk¹.

PLHIV may experience double suffering by living with an immune system limiting agent and still be stigmatized as belonging to the at-risk groups or practicing certain behaviors considered socially unacceptable². It is considered that, with the advent of increasingly efficient antiretrovirals, the representations of AIDS in social groups that coexist with the syndrome present new elements, at the same time that the continuity of certain dimensions is expected. Studies point out that the syndrome, previously associated with the homosexual population, is dependent on injecting drug users and sex workers, and it has manifested more expressively in women, elderly people, rural residents and those with low income and education level2,3.

In this context, the object for this studyVII refers to the social representations of HIV/AIDS for people living with the syndrome. The guiding question is: what are the social representations of HIV/AIDS for people living with the syndrome? The objective was to analyze the representational contents of HIV/AIDS for people living with the syndrome.

The relevance of the study is linked to the possibility of reflection of the professionals in relation to the assistance practice with a holistic and individualized approach, assisting in the understanding of PLHIV, valuing their knowledge and contributing to the prevention of isolation and social withdrawal.

 

REFERENCIAL THEORETICAL-METHODOLOGICAL

From the Social Representations Theory (SRT), such representations can be defined as a form of knowledge common to most people, derived from the interpretations and translations of the society about a certain subject. It seeks to consider the way in which the subject was transmitted and the baggage that people have to interpret what was passed and/or captured by them, being also called the common sense of contemporaneity3, in addition to their imagery representations4. They are complex phenomena in constant action in the society and it can be discovered diverse elements of informative, cognitive and ideological origins, always related to some aspect of the reality. Such definitions contribute to the creation of an image of reality shared by members and can be the same as other groups, serving as a guide for actions, decision-making, and daily exchanges5,6.

AIDS is a hitherto incurable syndrome that has the HIV that affects the body's defense cells as its causative agent, causing them to reduce and increase the possibility of infection by other pathologies. AIDS is one of the serious problems of public health, being characterized as a global epidemic. Thus, a rapid economic, political and psychosocial response is necessary because it is considered a problem of great magnitude and surrounded by taboos and myths3.

It is added that, with the technological and pharmacological advance, AIDS is now seen as a chronic disease7. The knowledge and definitions present in a given group based on their interpretations about HIV/AIDS supports the elaboration of a vision, decision-making, daily thoughts and actions regarding the syndrome7. With the advent of the first cases of the syndrome, people were engulfed by feelings such as fear, seen from the imagery4 that they had with frequent media appearances of people living with the virus, such as the young Brazilian singer Cazuza. It is possible to delimit the historicity of AIDS in two major phases, first with hopelessness and death, and then with antiretrovirals, with a longer life expectancy8.

 

METHOD

This is a qualitative study based on the Social Representations Theory (SRT) in its procedural approach. The procedural approach seeks to show how a certain group of people constructs reality, corroborated by their beliefs and values, that is, it is the study of the process of organization of thought about a given fact, object or phenomenon9, being chosen because it is understood that is the main form of identification of the processes of construction and anchoring about the PLHIV relational representational constructs.

The study scenario was the Special Assistance Service (SAS) in HIV/AIDS of a public hospital of the municipal network, located in Rio de Janeiro, considered a reference for the treatment of PLHIV. Thirty HIV-positive patients participated in the study. The criteria for inclusion in the research were to be older than 18 years old, at least six months of diagnosis and in use of antiretroviral drugs, considering that the time factor is primordial for elaborating practices on the representational object and also formalizing a representation on the subject. The criterion of exclusion of participants was the presence of mental disorders, recorded in medical records, which prevented the coherent exposition of ideas.

The data were collected by the semi-structured interview technique. The interviews were recorded in a digital audio device and later transcribed, from June to December 2010. The interview script covered issues such as the subjects' concepts, feelings, and attitudes regarding AIDS, myths, beliefs and the anchorages of the syndrome, the origin of AIDS in the world, its metaphors and images, the sources of information of the subjects, the meaning of being HIV positive, among others.

For the treatment of the data, the analysis of thematic-categorial content was used10,11, a process by which the discursive material, after the floating reading, was systematically transformed and aggregated into smaller registration units - RU. RUs of close significance were grouped giving rise to units of signification (themes). Then, these themes were quantified and regrouped to form the categories, ready to be presented and discussed. The operation of the analysis of this study was based on the worksheets prepared by the authors. It should be noted that the RUs referred in the text were identified according to the respondent's number (E1, E2, E3...). It should be emphasized that this research was submitted to the Research Ethics Committee of the Municipal Health Secretariat of Rio de Janeiro and approved under protocol number 200/08.

 

RESULTS AND DISCUSSION

In the content analysis of the interviews, there were 206 RUs emerged, 36 themes and three categories: The meanings of AIDS: between feelings and definitions; The images of AIDS: incurable disease, death and Cazuza; and The coping of AIDS: the approach to some strategies.

The meanings of AIDS: between feelings and definitions

The first category has 81 registration units, 15 units of significance and 40% of the corpus of the analysis, being the one with the highest RU number. The units of meaning corresponding to the category are feeling of sadness, AIDS as a chronic illness, despair after diagnosis, fear of AIDS, AIDS as a problem, AIDS as a limiting factor, AIDS as something harmful, surprise by diagnosis, sexually transmitted disease, AIDS as a synonym for pain, gay illness, disease of the other, exclusion for others, revolt by disease and disease of the century.

The feeling of sadness emerges as the theme of greater representativeness in this category. This situation can be explained by the fact that the HIV/AIDS diagnosis is characterized as suffering and sadness that needs to be absorbed in the daily life, considering that the syndrome has no cure. Diagnosis is shown as a reality that they experience, must accept and this process of acceptance of AIDS is present in the context of the symbolic references of the social group to which they belong.

I'm very sad, but now I've gotten used to it because we have to get used to it. Against facts, there are no arguments. (E23)

I was scared, I was sad, I did not want to accept, but what can I do, [...], you have to accept. (E26)

Sadness can be associated with diagnosis and concern for family members, fearing to leave loved ones. In this sense, sadness relates not only to oneself, but also to the others involved in their social group, and especially the family.

Sadness, much sadness. Sadness more because of me and because I already had a child, I was afraid to leave him (E04)

The diagnosis of seropositivity arouses a range of feelings, such as sadness, depression, and fear. When infected, it appears that PLHIV loses control of the continuity of its own life, especially during periods of hospitalization. The syndrome is expressed as a limit that prevents the realization of dreams and future plans12.

AIDS also assumes the meaning of despair. Fear of the syndrome can be explained by the stigma faced by PLHIV, the feeling of imminent death, or the complications of fragility in the immune system. This despair reinforces the idea that health professionals, especially nursing professionals, need to be sensitive to perceive that treatment requires empathy and visualization of the patient's psychological fragility. Biopsychosocial aspects should be addressed to improve adherence to medication and to increase the care that patients need in their daily lives in terms of food, rest and physical exercise, as described below:

Fear... is the fear that most frightens everyone, who does not have this knowledge. Ah, no, AIDS here kills, if you have AIDS you will die, you will suffer. (E07)

Total despair... Even discouragement, lack of hope. (E09)

Following the themes present in the subjects' discourse, AIDS emerges as a chronic disease. Another important aspect of this issue is the anchoring of AIDS in chronic non-communicable diseases accepted in the daily lives of people, which means a process of naturalization of the syndrome.

AIDS is a disease that has control. (E02)

Have a chronic illness, such as diabetes. (E07)

It should be added that at the beginning of the epidemic, the representation of AIDS was evidenced by anchoring in cancer, plague or other stigmatizing diseases. This fact gave rise to expressions such as gay cancer and pink plague13. This new anchoring process has similarities in other studies3,14 and it is related to representational changes observed in the social representations of the syndrome in recent years2.

With the advent and the systematic distribution of antiretrovirals in the context of the Unified Health System, the presence of AIDS is no longer associated with the image of condemnation to death, and PLHIV have begun to envisage a longer life expectancy. With this, it can be considered that there was a significant transformation in the conceptual relation of the disease, which entered a process of chronification. It is known that AIDS, after more than 30 years of its discovery and many transformations, can be characterized as a disease of a chronic evolutionary character15.

The confrontation of AIDS: the approach of some strategies

The second category has 69 units of records and 15 units of significance, which corresponds to 33% of the total corpus of the analysis. The units of signification referring to the category are change of habits, AIDS as any disease, AIDS as a synonym of greater personal care, AIDS as something natural, overcoming, appreciation of family and life, struggle for life, AIDS as life, diagnosis, if loving more, people without prejudice, approaching faith as a point of support, freedom, life experience and happiness after diagnosis.

In this category, it is observed that virus infection has brought, for some, an approximation with faith, serving as a point of support for overcoming the diagnosis and its interfaces and the search for a higher power as a form of relief, strength, and overcoming.

It was heartfelt prayer, to survive 10 years with this problem. (E01)

Over the years, some changes in the nursing care process have become necessary to meet the increasing demands on the healthcare of the human being. With this, a care model was designed that addressed not only the biological aspects but also the biopsychosocial and spiritual aspects of the individual16.

It is important to emphasize the importance of spiritual aspects for PLHIV, since they are often victims of the stigma associated with the syndrome, having to coexist, for example, with the idea of ​​risk groups 17,18. With this, the spiritual factor may be preponderant for the well-being of the individual. However, unfortunately, it can be a neglected factor by the health professionals, partly by the sensation of subjectivity in the intervention of this question16.

It can also be observed the representation of the syndrome as a resumption, in which one should value life and family life more as if they were facing a daily struggle for life and needed the strength and support of others to overcome it.

My feelings today living with HIV/AIDS is one of willpower. (E03)

That's it, to give more value to life. (E14)

I saw so I have a family, people who love me very much, so the disease she had that side. (E20)

This resumption is associated, in some cases, with drug treatment that requires discipline and it is associated with changes in habits and customs, especially with those that adversely affect the effect and efficacy of medications, as well as the process of adherence to treatment.

With the changes experienced after the diagnosis, in some situations, it is possible to value life more and to realize that the diagnosis is not a limiting factor for its progress. This fact is important for survival and quality of life because, with the valorization of life and the awareness of the consequences of abandoning treatment, it becomes easier to adhere to prescribed drug therapy19. In some cases, the family may be viewed as a health unit, considering its importance in the care of PLHIV at a time when it is surrounded by stigma, doubts, and uncertainties. With this, the empowerment of the individual occurs and the consequent physical and mental rebalancing20.

Another important aspect is related to the participation of the family member in the PLHIV drug adherence process, becoming a partner of the health service. As well as being able to aggregate important information, it favors compliance with the therapeutic regime implemented by the health team, which can assist in the general care of being a close person20.

AIDS has the incentive representation for a greater personal care, associated to the increase of the self-love when the individual begins to value more its existence. The timing of diagnosis is a watershed in the subjects' lives.

Being HIV-positive means I have to be more careful with myself. It's a watershed. (E03)

You begin to love yourself more in the sense that you have a body, you have to take good care of it. (E29)

It is known that the diagnosis of seropositivity can trigger a process of greater self-care. However, for this to happen, effective health education is needed not only with PLHIV but with the whole family, whenever possible, in addition to seeking alternatives to stimulate this process concretely21.

 

The images of AIDS: incurable disease, death, and Cazuza

The third category has 56 registration units grouped into six themes, representing 27% of the total corpus and forming the smallest category in the quantitative aspect. However, it has the theme composed of the largest number of registration units, AIDS as a synonym of death. In this category, HIV/AIDS is seen as an unsolvable disease, a faster and no-return path to death, and may be considered by some as the end times. The representational dimensions that make up this category confer negative attributes on HIV/AIDS, as well as the first category.

Death thinking is associated with depression caused by the diagnosis and the perception of AIDS as an incurable disease, as well as the negative images present in society about the syndrome. It is known that despite the technological and scientific advances, the perception of impending death is still present in the day-to-day life of PLHIV, requiring a greater attention of health professionals22.

The end, death, disgrace, the worst thing that could happen in a person's life for me was AIDS. (E20)

For me, it was going to happen... I was going to die. (E12)

In the testimony clippings, it can be noted that AIDS is associated with negative aspects, being referred to as disgrace or even the worst thing that could happen to someone, corroborating with the idea that death is a natural consequence for those who are infected with HIV and carries the syndrome.

The incurable disease emerges as the second theme that makes up this category. AIDS has the representation of a disease without cure and, consequently, associated with the human condition of finitude.

An incurable disease. (E28)

AIDS is a disease without cure. (E10)

Even today, despite the possibilities of control and treatment with antiretroviral therapies, it can be noted the prejudice about AIDS and consubstantiate in the image of an incurable disease that does not match the representations of chronic disease that begin to appear in the medium the statements of some interviewees in the results of this study and others3,23.

In the Cazuza theme as an image of AIDS, it is observed that the singer at the end of his career, in a terminal and cachectic state and, with the strong images of video and film about his life, made the idea of terminality stronger, becoming a synonym of death.

I saw Cazuza as the end, I thought it was even better to have a cancer than to have AIDS. (E20)

AIDS equal to Cazuza. (E03)

It should be noted that this image is related to the fact that Cazuza is the first icon of the national media to admit the diagnosis of seropositivity24 and expose the physical manifestations of the disease that stigmatized him, as well as the lifestyle he adopted.

 

CONCLUSION

This study analyzed the social representations of HIV/AIDS for the patients with the syndrome, the relationship between the diagnosis and the way the PLHIV deals with it, showing, some forms of perception regarding their serological status during the work. With the study, it was observed that, for most patients, AIDS may be accompanied by a negative representation of fear and disappointment, in which a strong relationship between the disease and the increasingly imminent death is observed. This death seems to remain present due to the absence of a resolutive treatment.

It is noted that each subject has a way of dealing with the syndrome and that, in some cases, the person can visualize the situation with positive dimensions, in which one has a reunion with the family, the search for more health and well-being and self-preoccupation. This situation is considered to be important since it represents a new vision that was hardly associated with HIV/AIDS previously. On the other hand, AIDS has still been a cause of much prejudice, in which PLHIV perceive the diagnosis of seropositivity as a death sentence. In this context the finitude of life becomes closer to each day, as in a countdown, in addition to the physical manifestations that are expected by the same, originating from the anchorage in the images of Cazuza and other contemporary artists.

The number of participants 30 subjects and the realization in a single health scenario is understood as limitation of the study. Thus, it is believed that other works that address the same themes of this study could increase the knowledge of AIDS for the population groups and favor the treatment and care provided by the professionals to the PLHIV.

It was observed in the study that the representations of HIV/AIDS have presented changes in relation to the confrontation of the diagnosis by the PLHIV, considering that even in the presence of prejudices and myths seropositivity begins to manifest itself in positive aspects such as family approximation, greater personal care and changes of habits.

 

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