RESEARCH ARTICLES

Changing professional practices in care for AIDS: social representations among health personnel

Fabiani Weiss Pereira^I; Adriana Dora da Fonseca^II; Denize Cristina de Oliveira^III; Geani Farias Machado Fernandes ^IV; Sergio Corrêa Marques^VI

^I Master in Nursing, PhD Student from the Post-graduate Program of the Nursing School at the Federal University of Rio Grande. Rio Grande, Rio Grande do Sul, Brazil. E-mail: enffabiweiss@hotmail.com
^II Associate Professor of Graduate and Post-graduate Courses of the Nursing School at the Federal University of Rio Grande. Rio Grande, Rio Grande do Sul, Brazil. E-mail: adriana@vetorial.net
^III Professor at the Department of Nursing Fundamentals and at the Post-graduate Program in Nursing of the Nursing School at the State University of Rio de Janeiro. Brazil. E-mail: dcouerj@gmail.com
^IV Professor of Graduate and Post-graduate Courses in Nursing of the Nursing School at the Federal University of Rio Grande. Rio Grande, Rio Grande do Sul, Brazil. E-mail: geanifernandes@yahoo.com.br
^VI Professor of Graduate and Post-Graduate Courses in Nursing. State University of Rio de Janeiro. Brazil. E-mail: sergiocmarques@uol.com.br

DOI: http://dx.doi.org/10.12957/reuerj.2015.15175

ABSTRACT

This qualitative, descriptive study drew on social representations theory to examine social representations among nurses and other health personnel of professional care practices directed to individuals with Human Immunodeficiency Virus and Acquired Immunodeficiency Syndrome. Semi-structured interviews of nineteen health professionals were conducted in southern Brazil between October 2012 and April 2013. Thematic category content analysis revealed two categories: care is represented as good in the diagnostic dimension, but difficult, incomplete and poor in the management dimension, and that a rule-of-thumb approach to the social dimension of care is currently in evidence, because the larger concern is not death, but social relationships. It was concluded that social representations of professional care practices are evidently changing, and are now permeated mainly by the possibility of living with the disease.

Keywords: Acquired immunodeficiency syndrome; care; health personnel; nursing.

INTRODUCTION

The Acquired Immune Deficiency Syndrome (AIDS) and Human Immunodeficiency Virus (HIV) appeared in a mysterious and terrifying way in 1980 in the United States and in 1982 in Brazil. At this time there was a complete absence of knowledge about the disease. In addition, its features included rapid mortality, as well as extreme and evident body disfigurement¹.

In parallel to the emergence and dynamics of AIDS, it is mentioned its impact on everyday life of health services with significant implications for public policies and for the creation of care professional practices¹. Caring for people with a disease until that time irreversible and stigmatizing, such as AIDS, is a complex phenomenon and can affect the professional significantly, regardless of their dedication and efforts². The fear of contagion, the difficulty in dealing with a chronic illness, the need of permanent care and often secret are just some of the dilemmas faced by professionals.

In this sense, health professionals play a key role in working with people with HIV/AIDS, requiring constant training, professional development, encouragement of joint and team work. The role of the nurse and the understanding of their importance in the health scenario and "of the potentialities that the profession has as a collaborator in the implementation of a new paradigm in health, more inclusive, holistic and critical"^3:352, because they revisit their knowledge and practices from the care time⁴. In this context, the professional practices of care, were and are still configured with social and cultural relevance⁵, therefore an object of study capable of generating Social Representation (SR)⁶. Moreover, due to its social construct, AIDS can be considered a sensitive representational object ¹.

The investigation appears in the following question: What are the social representations of professional practices of care aimed at HIV/AIDS patients, developed by nurses and other health professionals? The justification lies in understanding the transformation of professional practices of care that were established from the beginning of the AIDS epidemic, until the present day.

Understanding these changes allows "the analysis and preparation of a practical knowledge adhering to the values, norms, beliefs and also to the scientific knowledge itself that is incorporated by these agents in the establishment of a particular form of symbolization, namely, the social and professional representations"^1:9. Also, by understanding that it is from the Theory of Social Representations (TSR) that one can understand the symbolic reality of care practices, seeking strategies that help to guide more appropriate and satisfactory care practices.

Thus, this study aimed to analyze the social representations of care of nurses and other health professionals aimed at people with HIV/AIDS.

THEORECAL-METHODOLOGICAL FRAMEWORK

This is a descriptive, qualitative study based on the TSR, which includes explanations, ideas and cultural expressions that characterize a particular group and that permeate most relationships, objects produces or consumes and communications established⁷.

It is part of a dissertation that is linked to a multicenter study conducted in Brazil entitled 'Transformations of health and nursing care in times of AIDS: social representations and memories of nurses and health professionals in Brazil'. It was developed from October 2012 to April 2013, in two services that work with the Municipal Program STD/AIDS: in the Municipal Coordination of STD/AIDS (CMDST/AIDS) of the Municipal Health Department, Municipal City Hall of Rio Grande/RS, and in the HIV/AIDS service of the University Hospital Miguel Riet Correa Jr. (HU), at the Federal University of Rio Grande (FURG).

The Municipal Coordination of STD/AIDS develops the management of activities and global initiatives to support people living with STD/HIV/AIDS and covers the Counseling and Testing Center (CTA) and the Municipal STD Clinic (AMDST)⁸.

The study included 19 health professionals, of high school and higher education levels, who were informed about the study objectives. It also obeyed all ethical standards and was approved by the Research Ethics Committee in the Health Area (CEPAS), of the Federal University of Rio Grande (CEPAS)/FURG under Opinion No. 091/2010. In addition, the legal aspects were analyzed in the light of Resolution No. 196/96, in force at the time. Those who did not agree to participate in the study and those who were removed from service for various reasons were excluded.

Recorded interviews were used to collect data, which were transcribed and organized, preserving the identity of all participants, using the initial letter of each professional category: nurses (N); doctors (D); social worker (S); psychologist (P); nursing technician (NT); nutritionist (NS) and pharmacist (PM) and the interview number.

Data were analyzed using thematic content analysis guided by the precepts⁹, systematized¹⁰ through the meanings expressed in the reports. This technique has been widely used in studies that are referenced by the TSR since it has characteristics of systematization and detailed analysis of the data collected^9,10. Content analysis enables unveiling the SR starting from the clipping of discursive passages, taking into account the theme thereof, called record units (RU). Next, the RU "are grouped into wider themes (meaning units), which in turn, will constitute the categories"^10:16. From this analysis, two categories emerged: Evolution of the professional practices of care throughout the epidemic and Astronaut scrub: from the acquisition of new knowledge to the demystification of AIDS.

RESULTS AND DISCUSSION

The age of the professionals ranged from 30 to 56 years old, and they were five nurses, five nursing technicians, one psychologist, one pharmacist, two social workers and five doctors, totaling 17 women and two men.

The analysis of the set of interviews generated nine categories from the clipping of 684 record units (RUs), representing 100% of the material analyzed. Following, the results and discussions of the first two categories will be presented, highlighting the key elements that characterize the content of the social representations studied.

Evolution of the professional practices of care throughout the epidemic

This category quantitatively contained the greatest amount of RUs, revealing both the importance of care developed by nurses and other health professionals, and the differences in the type of care provided from the start of the epidemic until the present day.

Regarding the concept of care, the analysis is based, in part, in the frame of the recommended human care, which is considered "a way of life in which humans try to harmonize their welfare desires in relation to their own actions to others' welfare"^4:61; however authors decided to add the most frequent content observed in interviews, creating, empirically, a subdivision, as follows: the technological; affective; diagnostic; social; and managerial dimension of care.

In the minority of the testimonies it is perceived the structured SR, i.e., wrapped in concept, image and attitude; in relation to the image, only few evidenced it. Concept refers to concrete information and is related to the organization of knowledge that the group has on the social object, which in this study are the professional practices of care. Image is designed as an internal reflection of the external reality and attitude refers to taking a decision, action or judgment¹¹.

Regarding the early days of the epidemic, participants reported feelings of fear of contamination, demonstrating empirically the technological dimension of care. Technological care is that focused in carrying out procedures seeking for healing^4,12, strongly linked to technicality and to the distance between patient and professional.

There was fear to attend, protection beyond what is necessary. [I used to administer] IV, IM medication, dressings, all procedures that are part of nursing. (NT6)

There has been progress in the professional practices of care; today we can see the representational construction rooted in reified knowledge of both the nursing field and other areas of health. Technological and scientific advances have influenced the way health professionals face the disease¹³; it is seen in the speeches the concept and representational attitude regarding the fear of contracting other communicable diseases and not necessarily HIV.

I think before there was more taboo, more protection to all HIV patients [...] Now, it is calmer, I myself am more afraid to be contaminated with hepatitis C than with HIV, if I stick myself in an accident. (N9)

A study conducted in a university hospital in Rio de Janeiro with nursing professionals corroborates these results. Some respondents showed, in an attitudinal perspective, a greater fear of contamination by the hepatitis than by HIV, given that scientifically the greatest degree of infectivity is attributed to hepatitis when compared to HIV¹³.

At the beginning of the epidemic, the affective dimension of care was linked to the feeling of pity, and that feeling approached patients and health professionals. So, even before the unknown disease and full of fear, there was professional dedication¹⁴. In addition, it influenced the conceptual and attitudinal manifestations of these professionals.

[We would have] much pity [...] sorrow for the loss of the patient, [...] but we would try to do everything for him. We would give everything they needed, attention and comfort. (D11).

I used to take care, talk, encourage adherence. It was scary, then positive. (N19)

Still on the affectivity of care, there is highlight to the imagery dimension of the patient as foreign object, in poor physical appearance, related to ignorance about AIDS, conceptually represented as a death sentence, that affected people of higher social level, and according to study participants, they had some kind of glamour.

[...] Those first patients felt as foreign objects, a disease that was a death sentence and then everyone looked like a strange beast [...]. (S13)

[...] they were more intellectual, articulate people with more active citizenship, glamour! (N16)

So the imagery aspect of the individual with AIDS early in the epidemic interfered in the professional practice of care, mainly in the emotional condition of health professionals, generating various feelings, including sadness, pity and helplessness. Still, the high lethality influenced negatively the first professional practices of care, favoring the gap between patient and health professional, even causing fear and social stigmas⁸.

The SR of the disease as glamorous possibly arose because the first cases occurred in those who had privileged purchasing power to make trips to other countries⁸. These issues have permeated and shaped the history of AIDS in Brazil and worldwide, as well as the SR of the disease in care practices¹.

As regards the social dimension of care, t can be observed the transformation from the beginning of the epidemic, in which the glamour of the carrier was replaced by pauperization, demonstrating that such modification influences the professional practices of care, as there is greater concern for social issues, which directly interfere in the health/disease process.

AIDS now affects mostly poorer people without the minimal resources for survival, which has been changing the attitude and way of thinking about disease, not only in Brazil but worldwide^1,14. It has entered and expanded, not only scientifically but also socially, so there was a modification in the reified and consensual care. In addition, there was the representation regarding the importance of patient care as an ally for the construction of public policies¹.

Still, by involving health professionals and care practices, it also evolved into a new concept that has been developed in the country, i.e., the technical-professional perspective.

[...]AIDS was in charge of teaching a different way of seeing, thinking and conducting health in the world, professionals had to review their attitudes because we have a disease that has grown both scientifically and socially [...] Society has brought great information that propelled the science to do the research and it is that way to this day. (N17)

I understand that the voice of those people who have HIV/AIDS [...] give us guidance so that we can build public policies, and if we do not listen carefully, we will not be able to realize, because the population is always changing, the need is always changing and we cannot have a static program, it has to be a dynamic program. (N19)

It can be seen in the reports that nursing remains an important conceptual stance, since it identifies the changes that AIDS has brought over the years to the professional practices of care. It emphasizes in a holistic manner the need for constant reflection about their practices, and to give voice and time to the protagonist role of the patient as a way to drive the evolution of science and thus the professional practices of care. Thus, it is evident that there has been a change of attitude of professionals towards the transformation of the epidemic, since AIDS is the first disease whose medical and social histories developed concomitantly, to the extent that society rebuilt AIDS from the culture combined to science, once so incipient¹.

It can also be seen, implicitly and not emphatically, the representation of care based on humanization, which reports to the affective dimension of care, since it was found concern of the professional with the issue of respect for patients, in that they must be listened so that their contributions can dynamize practices, maintaining the AIDS program geared to their actual needs. From this perspective, it is cited research conducted in clinical and gynecological care services in Rio de Janeiro, with 46 women who denounced the organization of services and the behavior of staff, who prevented the participation of patients and the development of health education actions ¹⁵, which, in a way, corroborates the results presented here, as no alternatives were found for patients to be heard, there were only reports of concern with such approach.

Participants reported that currently the empiricism of the social dimension of care is in evidence, since the main concern is not about death but about social relations. They highlight that care is represented as good in the diagnostic dimension and difficult, incomplete, and poor in the managerial dimension.

[...] they could not even achieve that they receive the bus tickets [UH]. The management is precarious [...]. (P14)

[...] prophylaxis, CD4 and viral load results, vaccination, we forward them to immunizations [here at the health center]. CP is the same thing. We have mammography in the case of women, and PSA controls for men [...]. (D8)

Bibliographical study shows that there are resources of public health policies that benefit the quality of care for people living with HIV/AIDS in Brazil and these are passed on to all municipalities¹⁶. Thus, it is believed that perhaps the organization of these resources in the studied municipality has a problem due to conceptual representations reported by different professionals of the services.

Astronaut scrub: from the acquisition of new knowledge to the demystification of AIDS

In the early days of the HIV/AIDS epidemic, there was no knowledge about the disease, which favored the stigmatization of AIDS and its carriers, and this was found through the testimonies full of imagery representations, wrapped in this precarious knowledge about the epidemic.

[...] the first HIV patients with AIDS arrived, and we looked like astronauts, we used to put so much protective equipment that we looked like astronauts to try to touch, because no one wanted to attend those patients. (S13)

The disease had negative aspects in its representation, since death was inevitable given the lack of more effective treatment. So fear of contracting the disease was intense, so care was redoubled; the representation of the disease in that period denounces the excessive self-care of the professional. Thus, the SR of AIDS directed to care practices, full of too many precautions.

We used to do horrible things: we used to burn the clothes and belongings of the patients we knew that had AIDS. (N16)

[...] we used to put up a whole scrub. AIDS patients' things were all separated. There was a stainless steel bowl that was full of hypochlorite and there we used to put the dish, flatware, whatever the patient used. (N17)

Corroborating this, in reporting the history of AIDS, the representational profile characterized by death and fear was associated, in the 80s and 90s, to the professional practices of care characterized by the use of exacerbated techniques of professional self-protection ¹. The fear at the beginning of the epidemic was total, studies nationally and internationally explain this feeling that permeated the care practices^2,14,17. The lack of training favored that the SR of AIDS was full of mystification, since knowledge was acquired through vague and incomplete news, as it showed people, especially from the art scene.

I knew nothing. I just remember people dying and losing weight. It appeared in the media. (PM12)

Everybody was Cazuza, they were cachectic and soon died, we saw in the media and we had no training in the beginning, so it was terrifying. (D10)

It is noteworthy that, despite triggering feelings of fear and terror, besides the mystification, the media were important for knowledge, dissemination and construction of the SR of AIDS. Although somewhat unprepared to deal with complex issues such as HIV/AIDS¹⁸, it was through the media that information about the disease was transmitted in the medical and scientific field to society⁵. It is worth noting the government effort in disseminating the principles of the Brazilian Health System for the benefit of the population, especially in the prevention and treatment of AIDS ¹⁹.

Regarding the use of personal protective equipment (PPE), there were two phases. In the first, early in the epidemic, precautions were performed in an excessive manner. And in the second, and current, there was neglect of standard precautions, with the understanding that this kind of precaution must be used for all patients regardless of their disease, mainly due to changing of stereotype of people affected by HIV/AIDS, causing the impossibility of identifying the person with HIV among the others.

There were two phases: first, since it was impacting, everyone sought to protect themselves, there were people who used to put two gloves, then they started to relax. But what has always worried us was to make everyone use for everybody and not only for those whose diagnosis was known. (D18)

We must have equal caution for all diseases; there is no reason why AIDS has to be different from others. (NT5)

Study conducted with nurses in a university hospital in Rio de Janeiro corroborated what is observed nowadays, showing that initial protection occurred in an exaggerated manner, using more than one glove, and today professionals understand that it should be used in a rational manner, with standard care for everyone, regardless of their disease¹³.

It was observed the need to encourage health professionals to seek knowledge and better conditions of effective development of care practices:

I have never done an in-service training; they should encourage us more, creating more opportunities. (NT3)

I made a wonderful training, but we have to go after, too. I think we have to always be updated. (D8)

There are currently several trainings with worldwide investments in research ^16,18. But it is still required permanent updating from professionals, as some training gaps have been observed for certain professions, such as for nursing technicians.

CONCLUSION

There has been a clear change in the representation of professional practices of care through a process of change that has been operating in the social representations of AIDS, with the introduction of the possibility of living with the disease and the diminishing of importance of death, especially after the advent of antiretroviral therapy. Currently empiricism of the social dimension of care is in evidence, since the main concern is not about death but about social relations. Still, care is represented as good in the diagnostic dimension and difficult, incomplete, and poor in managerial dimension.

This process of change has been empirically demonstrated in this study by analyzing the statements, placing it as a contribution to the state of the art of the knowledge on the subject of ways of thinking associated with HIV and AIDS, as well as the relations established between representations and professional practices of care.

It is noteworthy that, through the look of social representations made by nurses and other health professionals, it is possible to arrange resources equally or more sophisticated than those of a technological nature for the realization of alternative forms of care practices that span both its biomedical and relational dimension. This apparatus of factors should incorporate to the ideal of a care that revisits and reshapes itself, based on dialogue, which occurs in the study. However, it was found that, in relation to humanization, such conduct needs to be further explored by health professionals, since it was not demonstrated emphatically during testimonies.

It is believed that this study enabled to know the SR of care practices, both in the perspective of caring of the others and in caring of oneself, emphasizing how important is the new study perspective related to social and professional representations. Despite its limitations related to the small number of subjects in a unique setting, this study achieved the proposed objective. In addition, it points to new pathways so that future research can explore, in other settings and contexts, the SR of professional practices of care, particularly in the nursing field, which needs to value the human dimension, taking into account its transforming character.

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