Older adults with HIV/AIDS: understanding the ideology of their experiences
Ticyanne Soares BarrosI; Karla Corrêa Lima MirandaII; Manuela de Mendonça Figueirêdo CoelhoIII
Nurse. Master. Professor at the Faculdade Ateneu. Fortaleza, Ceará, Brazil.
II Nurse. Psychologist. PhD. Professor at the Universidade Estadual do Ceará. Fortaleza, Ceará, Brazil. E-mail: firstname.lastname@example.org
III Nurse. PhD. Professor at the Faculdade Metropolitana da Grande Fortaleza. Fortaleza, Ceará, Brazil. E-mail: email@example.com
Objective: to understand the ideological basis in the experiences of older adults diagnosed with Human Immunodeficiency Virus (HIV) infection and Acquired Immunodeficiency Syndrome (AIDS). Methods: this qualitative study was conducted using the creative, sensitive method and French discourse analysis in a group meeting of five older adults monitored at a Counseling and Testing Center in a municipality of the Fortaleza metropolitan region, Ceará. The project was approved by the research ethics committee (No. 212.243 and CAAE 08453412.5.0000.5044). Results: the older adults' accounts framed the discursive formation Resigned life, immobilized attitude!, characterized by four existential situations: controversial conceptions regarding physical violence in childhood; a business called AIDS; guilt and lack of response related to HIV infection; and faith-based support. Conclusion: although most of the situations raised by the older adults were painful, there was no attempt to react, only immobility and resignation, leading to an ideology of colonization.
Descriptors: Nursing care; HIV; aged; qualitative research.
In Brazil, there has been a progressive increase in the number of reported cases of Acquired Immunodeficiency Syndrome (AIDS) among the population aged 60 or over, in both sexes, which passed from 1,131 new cases in 2005 to 2,217 new cases in 20161.
Concomitant to this process, issues related to the sexuality of the elderly have remained veiled. Health professionals do not perceive the elderly as sexually active, which means that they do not dialogue or question the elderly about their sexual life2.
The condition of living with the Human Immunodeficiency Virus (HIV) brought the need to rethink and reformulate care, placing health professionals before issues that have not been openly discussed, such as sexuality, diversities, losses and death. Professionals have been faced with affective and social issues related to the disease as well as the expectation of individuals, the death of the being under care and the lack of resources for assistance as challenging factors for a quality care that considers the needs of the other3.
Thus, nurses must understand the aging process in all its nuances in order to provide care that values dimensions that go beyond the technical aspects, privileging, also, the spiritual, the ethical and the aesthetic dimensions4.
From the subjectivity that permeates this process, with the expression of feelings and emotions considering the experiences of the elderly under their eyes as social and historical subjects reveals an ideological understanding of constituents that can address their needs and peculiarities in the face of aging and to HIV infection, references that seem essential in supporting nursing care actions.
In this sense, this study aims to understand the ideology present in the experiences of the elderly with HIV/AIDS under the French discourse analysis.
We chose the discourse analysis in the conception of the French current of thought5-10. Such referential includes subjectivity, considers the historical and social context of the enunciator and enables the unveiling of an ideology that consolidates in a complex way for not being deliberately exposed in the lines, but obscure between the lines 6.
Starting from the premise that the specific materiality of ideology is the discourse and the specific materiality of discourse is the language, the language/discourse/ideology relationship is consolidated5.
Dialogue is characterized by the meanings built up from the interacting agents, including the experiences, the representation of the object of enunciation, the world view and the social class, among other aspects, as basic conditions for the event, determining the said and the non-said10.
Discursive formation is the basis of the analysis of discourse, which defines what can and must be said in a given ideological formation, starting from a certain socio-historical position and condition7 . The use of analytical devices facilitates the discovery of meanings and the identification of the discursive formations present in the corpus of the study.
Discursive formations converge to the same point where the ideology shows itself. Ideology emerges as an effect of the subject's relationship with language and history, an essential relationship so that there is a meaning5.
The present study is a cross-cutting of a broader project entitled HIV/AIDS in the elderly: speeches produced through their experiences . The qualitative approach was used as the way to reach the proposed objective. Believing that the active participation of those involved and the expression of their subjectivities have singular relevance in the production of knowledge, the creative and sensitive method was chosen among the qualitative methods11.
This method is composed of the triad: group discussion, participant observation and creativity dynamics, providing interaction among the participants through artistic productions and the critical-reflexive approach, by encouraging dialogue and expression of feelings and emotions 11.
Data collection was carried out in a group meeting at the Testing and Counseling Center of a municipality in the metropolitan region of Fortaleza, Ceará, which is characterized as an outpatient service and provides multidisciplinary assistance to people living with HIV/AIDS.
The inclusion criteria of the subjects in the study were: being HIV positive, having been followed up at that institution and being 60 years or older. Of the 11 elderly people who met the inclusion criteria, five attended the meeting, three men and two women, ranging from 60 to 72 years old. To guarantee anonymity, each elderly person was named with the letter E (elderly), followed by the order of participation in the group.
For the production of the data, we proposed the realization of the dynamics of creativity and sensitivity Life line11, in which each participant should build their life line through drawings, collages and/or writing. After explaining how the dynamics would be, the elderly showed themselves resistant and reported they only wanted to talk. Thus, they were asked to tell about their lives, from childhood to the present day. They were listened and had freedom to discuss aspects they considered relevant to their experiences, as well as to discuss issues among themselves, generated from their own discourses, without the elaboration of artistic productions.
The meeting was recorded in audio, and the verbal productions were later transcribed with construction of linguistic materiality. The stages of the discourse analysis process were: passing from the linguistic surface to the discursive object, transposition of the discursive object to the discursive process and displacement of the discursive process to the ideological formations10.
Authors used analytical devices of discourse analysis with an emphasis on the paraphrase (the return to itself), the polysemy (the rupture, the displacement), the interdiscourse (the discursive memory) and the metaphor (the taking of a word by another so that what words mean is instituted by a transfer mechanism)5,9.
From the specific ways of saying characterizing the subjects in front of the object of study, we identified coded life situations, which are problem situations, whose elements will be decoded by the group12 as a way of explaining the discursive formation that permeated the experience of the elderly and thus the ideology.
The ethical imperatives of research with human beings were respected, according to recommendations of Resolution no. 466/1213, of the National Health Council. The project was approved by the Research Ethics Committee of the São José Hospital of Infectious Diseases under opinion Nº 212.243 and CAAE 08453412.5.0000.5044.
RESULTS AND DISCUSSION
In the search for an understanding of the ideological formation that permeated the experiences of the elderly with HIV/AIDS, we found discourses that led to a resigned life, with acceptance of the situations lived and immobilization before them, with the highlight to paraphrastic processes standing out in the midst of the rare ruptures. Although most of the situations brought by the elderly people were of suffering, there was no apparent and explicit attempt to react to change them; there was only immobilization and resignation, mainly through faith as mediator, which distinguishes the discursive formation Resigned life, immobilized attitude!. In this discourse formation, four existential situations prevailed and characterized it: controversial conceptions about physical violence in childhood; a thing called AIDS; lack of answers and guilt related to HIV infection; support in faith.
Controversial conceptions about physical violence in childhood
The discourses of the elderly participating in the study were marked by the physical violence they had suffered in childhood, and on how this aggression has brought repercussions in their daily lives. Controversial ideas were generated among them on this subject: how having been beat means something bad or something good in their lives.
Disciplining a child using physical and psychological punishments is a common form of education used by parents and guardians. Thus, the psychic impacts of violence suffered by the family generate behaviors of acceptance and normalization through such experience, thus reinforcing the banalization of the violent education and cultural institution of such practice14.
One of the seniors expressed a series of paraphrases that referred to the perceptions about his childhood and the violence he suffered, emphasizing the idea of how physical punishment was a bad experience in his life. The bad feelings that an elderly person believed to be the result of repression were also pointed out with conceptions about how the violence to which they were subjected reverberated in their lives.
So I grew up amid this drama...my childhood was not a good childhood. (E1)
My father, he did this to me, I think I'm nervous because of this ... these beatings[...]. (1)
Then, I think that this nervous state, this nervous thing that I have, this fear, is because of my childhood. When we are raised in a good childhood, we become good, when we are raised with badness, we become a traumatized person. (1)
The elderly man related the nervousness and the fear that he felt with the violent situations that he had experienced in childhood and considered himself a traumatized person. The repression suffered and the perception of himself as a victim is something he constantly remembers, showing how such an experience has marked him negatively. Even with the emergence of divergent subjects, he returned to this experience when talking about it.
Some cultures deem the use of physical punishment can guarantee a good education to the children, which is deceiving, since this practice entails "damages to the psychological, physical, cognitive and social development of the victims"15:13.
Negative feelings could be perceived in the elderly's words, which reveal the harmful effects caused by the violence suffered in childhood. However, other elderly people presented opposite conceptions about this subject.
My childhood was good, thank God, it was very good; the fact that he [referring to the father] beat me was very good... (2)
I thank my father for having done this to me, he beat me because if he did not beat me, I would be a bone lazy. Maybe if he had not discipline me, maybe I would be what? (2)
Because there are many delinquents, some 12-year-olds are already ... smokers, they smoke I do not know what. Why is that? Because they has not been beat by their parents, they could not be beat [...]. (3)
In the aforementioned statements, the elderly relate wrong behavior to the lack of physical punishment, in which one of the elderly elucidates that there are many delinquents and children who smoke drugs because they have not been beat by their parents. Both relate physical punishment with respect, as can be perceived in the subsequent dialogue.
So since we have been hit by our families, I think we ... had something more in life ... some kind of... (3)
More respect! (2)
Respect, exactly! (3)
Elderly who composed the study group experienced their childhoods in the 1940s and 1950s in a society still marked by strong patriarchal traits. Such a social model presents as characteristics an adult-centric and authoritarian society, in which the child has always been reserved a smaller place: the place of non-being, punishment, disrespect, humiliation, violence"16:104.
A thing called AIDS
AIDS brings with it, in its representations and social constructions, marginalization, social exclusion and prejudice17. Such representations and social constructions influence the way the virus carrier perceives and experiences the disease.
In the speeches of the elderly, the use of metaphors to refer to the disease was noticeable, which can reveal the meaning of the syndrome in their lives, as they avoided pronouncing the words HIV or AIDS. The word thing was used to refer to HIV and the disease, perhaps as a form of detachment from the feelings that permeate seropositivity.
I do not know how it happened, this thing. (E1)
This thing that I have, I do not know where it came or left to come [...]. (2)
For me to know how I could get this thing [...]. (3)
The problem and plague metaphors were also used to refer to the disease, so these terms refer to the reflection that the disease in their lives represents a problem and a plague, terms that may be related to the physical and/or emotional problems related to discovering HIV and to getting sick.
Maybe this problem has arisen, I do not know. (3)
I also got that same plague that he mentioned there [...]. (4)
Disinformation about the disease and the fear of contamination increase prejudice and social stigma that permeate HIV, which causes suffering for people living with the virus18. Even health professionals point out in their discourses negative meanings related to fear and prejudice to people living with the infection19.
Negative conceptions about AIDS can foster an attempt to escape diagnosis, since they can bring suffering. They appear to motivate reflection on a possible denial of these meanings.
I have nothing, I do not have this anymore! (3)
I'm very well, I have nothing, I feel nothing [...]. (4)
I got cured; I take medicine because I have to take it [...]. I'm okay, I'm very satisfied. (5)
Saying that you are well and have nothing can be a way of denying to others and to yourself what the disease represents, a form of avoidance, denial, escape from pain and suffering. One must say they are well so that they can believe, which may bring comfort and acceptance. Or even, such sayings may be related to disinformation about the disease and stages of infection.
A study pointed out that denial arises as the main form of coping with AIDS, in which there is no change in daily routine and characterization of life as normal; however, this perception may have negative results, since the virus carrier may become indifferent or disinterested in being informed about the disease and, with that, to jeopardize the care of self and of the other20.
However, in another study, we observed the representation of AIDS as a resumption, in which the disease brings with it a greater appreciation of life and family life, as if a daily fight was fought and the strength and support of the other were necessary21.
Lack of answers and guilt: HIV infection
The lack of answers on how the HIV infection occurred and the guilt were highlighted in the discourses of the elderly, whose paraphrases about not knowing how the virus was transmitted to them stood out.
I do not know how it happened, this thing. (E1)
This thing that I have, I do not know where it came or left to come; all I know is that I'm treating it. (2)
Because I wanted to get there so I knew how I could get this thing, because I do not even know it until today [laughs]... (3)
From the aforementioned words, we can think about the possibilities: the subjects do not really know how the HIV infection occurred or they do not want to know, do not wish to face such an answer, as it could cause them pain and revolt.
Doubts can also arise as a way to get rid of the guilt that is present, since blaming someone or something, or even not finding someone who occupies this place, is easier and less painful than to perceive oneself as responsible and to face the feelings that this responsibility causes.
The guilt against AIDS is related to judgments that permeate the subjectivity of all individuals, such as morality, conscience and justice, being responsible for behaving according to what is socially accepted22.
Support in faith
In the face of the situations that the elderly presented, the faith emerged as used with diverse objectives. One of the subjects, in his life experiences, revealed a history of suffering, in which he suffered physical violence on the part of the father and mistreatment on the part of the brother. Faced with this suffering, he found in faith in a superior Being, a support to face difficulties and even used it as an option to solve problems.
But I believe in a God ... and I ask God for all that he [referring to a brother who mistreated him] does with me, may God rebuke this of him. (E1)
The elderly man asked God to rebuke what his brother had done to him, that is, he assigned to the divine entity, in whom he believes, the responsibility to act in the face of what causes him sadness. Whoever took responsibility for action was not himself but a higher Being. This assignment may occur because he believes he is powerless in front of his brother, so it is a way of withdrawing the responsibility for his reaction.
Faith also appeared as support in coping with HIV/AIDS. Studies have demonstrated the use of religion as support and emotional support for seropositivity18,23. The perception of being with an incurable and death-related disease emanates feelings such as fear of what can occur, death, rejection, anguish and sadness18.
I got this disease but I prayed a lot; I'm Catholic, I've become attached to Our Lady, Santa Terezinha, I'm still attached to her until today and thank God I'm good, thank God. (5)
HIV patients bring spirituality in a very present way, with a meaning that goes through confrontation, support and way of life, being also related to a possible cure, through belief and faith, providing them with hope20.
Faith appeared in the discourses of the elderly with the most varied objectives: support, emotional support, hope, coping, escape from loneliness and non-accountability. However, in all words, it came primarily as a means of conformation, of resigning oneself to suffering and pain. This conformation was found very clearly in the following speech:
At the time my Jesus wants ... I will not go by my own hands [referring to death], but in the time that my God wants... (3)
In this speech, the elderly man alluded his conformation to God, believing that he had not died because God did not want to. The incompleteness of thoughts and the silencing present in his words motivate him to ponder the use of these elements, possibly as distancing from the word death and the pain that this association causes him, or even from the revolt that accompanies that thought. A study with elderly people pointed to the strong association of AIDS with death24.
From the analysis made, we can infer that the experiences of the elderly directed to a colonizing ideology, marked by oppression and repression, present in their experiences from childhood and that remain from the gaze of a society that does not understand old age as a natural process, reflecting in resignation to what is imposed by life and immobilization, without any attempt to change in the face of bad situations, with support in faith. The colonizing ideology brings mainly the concept of domination of the subject.
The group meeting provided a therapeutic space for listening, since the elderly presented the need to talk, in which they could perceive themselves with similar problems, knowing and sharing different experiences.
As limitations of the study, there was the difficulty in contacting the elderly, which contributed to the reduced number of participants in the group meeting, and the fact that it was only one meeting, making it difficult that participants become closer. Another restriction referred to the conclusion of the study, which concerns the ideological basis of the experiences of a group with unique characteristics, so its findings cannot be generalized.
Given the results, the nurses are proposed to reflect on the care they perform, and to seek in their practices the appreciation of listening, a listening that is not directed only to AIDS and related problems. We propose a care that stands out to the use of often mechanical techniques or attitudes and speeches; it is necessary to consider individuality, specificity, feelings, desires, history, social context and bond.
It is necessary for nurses to value the experiences and specificities of each client, as well as knowledge and understanding of the aging and seropositivity process, recognizing sexuality as part of a healthy aging, minimizing stigmas and prejudices. It is crucial to improve the quality of life of the elderly that they perceive themselves responsible for their own care.
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