RESEARCH ARTICLES

Antiretroviral treatment adherence and the spirituality of people with HIV/AIDS: social representations study

Caren Camargo do Espírito Santo^I; Antonio Marcos TosoliGomes^II; Denize Cristina de Oliveira^III; Sergio Corrêa Marques^IV
INurse, Doctoral Student in nursing through the Graduate Program in Nursing at the State University of Rio de Janeiro, Substitue Professor in the Nursing Graduate Program at the State University of Rio de Janeiro, Rio de Janeiro, Brazil, Email: carencamargo.enf@gmail.com
^IINurse, Full Professor of the Department of Medical-Surgical Nursing and Professor of the Graduate Program in Nursing at the State University of Rio de Janeiro, Rio de Janeiro, Brazil, Email: mtosoli@gmail.com
^IIINurse, Full Professor in the Department of Fundamentals of Nursing, School of Nursing, University of the State of Rio de Janeiro, Rio de Janeiro, Brazil, Email: dcouerj@gmail.com
^IVNurse, Associate Professor, Department of Fundamentals of Nursing and Coordinator of Research and Social Demands of the State University of Rio de Janeiro,Rio de Janeiro, Brazil, Email: sergiocmarques@uol.com.br

ABSTRACT: This study aimed to analyze the expressions of spirituality of people living with Human Immunodeficiency Virus/Acquired immunodeficiency syndrome (HIV/AIDS) in the process of adhering antiretroviral therapy, from its social representations according to their own therapy. This is a qualitative and descriptive study, based on the Theory of Social Representations. The study included 30 people with HIV/AIDS in outpatient treatment at a public hospital in Rio de Janeiro. Data were collected, in 2009, through interviews and analyzed by thematic content analysis. Spiritual experience is mainly through the will to live, which makes them adhere to medication therapy. Participants also believe in divine healing for their own disease. It is noteworthy, therefore, the importance of the expression of a healthy spirituality without negative interference in the process of adherence to medication therapy.

Keywords: HIV; acquired immunodeficiency syndrome; medication adherence; anti-retroviral agents. 

INTRODUCTION

The evolution of knowledge and the use of increasingly efficient technologies caused AIDS to have changed its natural history. The emergence of new medicines and the expansion of the availability of antiretrovirals (ARV) resulted in significant improvement in the quality of life of individuals infected with the Human Immunodeficiency Virus (HIV). The Acquired Immunodeficiency Syndrome (AIDS) began to assume chronic character and, currently, has prolonged evolution, where the long asymptomatic periods are interrupted by the appearance of opportunistic infections¹.

In the early 1980s, when AIDS was discovered, there was no effective medicines against the syndrome and therapeutic proposals were very limited in terms of clinical responses. The year 1996 marked a major change in the history of HIV/AIDS infection being directly related to the institution of highly potent antiretroviral therapy (HAART)². Since 1996, the Brazil ensures universal access and free access to antiretroviral medicines in the Unified Health System (SUS) and was one of the first developing countries to ensure that therapy for free³.

The benefits brought by antiretroviral therapy to individuals with HIV/AIDS are indisputable. However, therapy should be initiated with great care, aiming to promote and facilitate adherence. The patients who use ARVs coexist with various adverse effects, such as nausea, vomiting, diarrhea, drowsiness, and lipodystrophy, which may be related to low adherence to treatment⁴.

Some studies show a strong relationship between the level of adherence to treatment and the progression of the disease. The low adherence decreases the effectiveness of treatment, worsening the patient's clinical condition and disseminates resistant strains. This fact shows the responsibility imposed on professionals, patients and caregivers in the search for the best strategy to cope with the difficulties encountered for adherence^5,6.

Therefore, adherence to antiretroviral therapy for people living with HIV/AIDS transcends the ingestion of drugs. This is mainly related to aspects relating to quality of life and a set of actions, such as the provision of access to services, the regularity in the consultations, the purchase of medicines, the supply and the completion of exams, the adequacy of everyday habits, the bond with the professionals, the guarantee of reference and counter-reference, care with food and hygiene and the use of preventive measures, in addition to the access to information5 and their own spirituality experienced.

It is understood in this study for spirituality as a personal dimension related to the search for answers to fundamental questions about life and its meaning, and about relationship to the sacred or transcendent, which may or may not lead or lead in the development of rituals religious and community formation⁷. This is a set of practices, attitudes, values ​​and feelings born of a relationship with oneself, with God and with each other, giving meaning to life and to personal stories, influencing and being influenced by social, cultural, biological, psychological and religious factors.
In this context, the objective of this study is to analyze the expressions of spirituality of people with HIV/AIDS in the accession process to antiretroviral therapy, from its social representations about their own therapy. Thus, this study is justified by the complexity and dynamics present in the process of accession to antiretroviral therapy for people living with HIV/AIDS, including the practice of their spirituality. It is important to contribute to the understanding of the factors related to the spiritual experience involved in this process of accession, in order that health professionals back to the spiritual dimension in care for the person with HIV/AIDS.

THEORETICAL-METHODOLOGICAL FRAMEWORK

It is a qualitative study and descriptive, based on procedural approach of the Theory of Social Representations in Social Psychology perspective. The procedural approach treats of representations focusing more on constituent (process) that in consisting (content) of representations, that is, it is concerned with the process of training, maintenance and transformation of social representations. The focus of the analysis are the productions, the symbolic meanings, the language, the object of study and theirsocio-historical and cultural bindings⁸.

For this study's scenario has been selected a public hospital clinic of a municipal located in the city of Rio de Janeiro. This institution is classified, by the Ministry of Health, as a service of specialized assistance (SAE) in HIV/AIDS.

For completion of the study were selected, at random, 30 patients for conducting interviews. The subjects are users of the SAE, older than 18 years, of both genders, whoe use antiretroviral drugs, have been diagnosis for more than six months and do outpatient monitoring specialized for HIV/AIDS.

 Data collection was conducted in April and May 2009 and involved the characterization of the subjects and conducting in-depth interviews, using a questionnaire and socioeconomic characterization of a thematic script that guided the interviews.

For data processing, the thematic-categorical content analysis was used^9,10, which consisted in a process by which the discursive material, after the initial reading, was transformed systematically and aggregated into smaller units - the recording units (RU). The RUs close in meaning were grouped giving rise to the meaning units (topics). Then, these themes were quantified and regrouped to form the categories, ready to be presented and discussed.

The operationalization of the analysis in this study gave from spreadsheets prepared by the authors. It stands out that the RUs referred to in the text were identified according to the number of the interviewee (E1, E2, E3 ... ) and their gender. It is noteworthy that this study was submitted to the Ethics Committee on Research of the Municipal Secretary of Health of Rio de Janeiro and approved under the protocol No. 200/08.

RESULTS AND DISCUSSION

In relation to the characterization of 30 participants and the gender variable, in particular, it can be noted that the majority of participants were female, - 16 (53.3% ), and all stated that they were heterosexual. Among the 14 (46.7%) interviewees were male, 8 (26.7%) they assumed to be homosexuals, 3 (10%) bisexual and the other 3 (10%) stated that they were heterosexual. In relation to age, the participants were concentrated in the range of 30 to 39 years, with 14 (46.7% ), followed by the group of 40 to 49 years, with 9 (30% ). Regarding marital status, 15 (50%) reported living in stable union and 3 (10%) informed have a fixed companion, but not living together. It was observed that most of the participants, 23 (76.7% ), lived with their family. Regarding education, 15 (50%) have up to complete elementary education. High school was concentrated in 11 (36.7% ). It is emphasized that only 2 (6.7%) have higher education.

In relation to the time of diagnosis, the vast majority of study subjects living with HIV for more than seven years. With regard to the time of use of antiretroviral drugs, 10 (33.3%) use medications between 4 and 6 years, followed by 9 (30%) that are between 7 to 10 and other 6 (20%) use the ARV between 11 and 14 years. By Comparing the time of diagnosis with the duration of the use of antiretroviral drugs, it is perceived that, for some respondents, the diagnostic time is not exactly the time of use of ARV or by not having had the immediate clinical indication or by simply opt not to adhere to drug treatment at the time of diagnosis. It is noteworthy that 10 (33.3%) have never changed the therapy, which suggests a good adherence and adapt this part of the study group.

Regarding religion, 25 (83.3%) of the subjects reported having some kind of religion, and 5 (16.7%) said they did not have it. The Catholic religion has stood out with the highest percentage, 11 (36.7%), followed by the Gospel - 9 (30%). Moreover, 4 (13.3%) of the interviewees stated be spiritualistic and 1 (3.3%) have another type of religion.

Regarding the discursive data, the participants that have drug treatment comment about their difficulties in adhering to antiretroviral therapy. Even not wanting to take the medication, they know that their lives depend on its use, demonstrating that, despite the existence of a negative attitude towards therapy is has a positive meaning, especially with regard to the prolongation of life. Thus, this positive significance leads to people living with HIV/AIDS to certain practices, being the fight the main one, highlighting as a constitutive element of representation of antiretroviral therapy. they also reported that there has to be perseverance mainly because the perseverance initiation of therapy is something difficult.

Each medication that I took, that I had to change, for me it was a struggle, I cried, because I knew that medicine, I would take, I had to make a choice: either live or stop the medication and keep a beautiful body and die. (E5, female)

It is not easy, you start the treatment, it is not easy. You have to have perseverance. [...] if you do not persevere, you give up. What is brutal [the initial treatment]. (E7, male)

Therefore, the recognition of the importance of life boosts the strength required to perform the treatment. The desire to live is so great that contributes to overcoming the barriers imposed on adherence to drug therapy¹¹.

When they speak of another, the difficulty of accession and the abandonment of treatment of non-members are characterized by a lack of love for life or love itself, which seem to be central content of the representation of people who do not adhere to drug therapy. Associated with this are the adverse effects of medications, such as the changing body, in addition to the shame of that other discover their serological status and depression, related to the syndrome from the disease.

Because here I know many girls here, they do treatment and medication is doing poorly, their body is changing, they stop, they will not continue. In addition to not continuing, they do not have an ounce of love for the life of them. (E5, female)

Ashamed of people discovering they have the disease and do not have the same care with themself. (E15, female)

Depressive people, they do not like themselves, have no love for life. (E18, male)

Another characteristic mentioned of who abandons the treatment is a death wish, or do not making anymore sense to live, which indicates an impaired spirituality. The feeling of closeness to death is also related to therapy abandonment. Therefore, the participants characterize the people who abandon the treatment as irresponsible, weak and depressive. Another situation related to lack of accession is the discouragement and the consumption of illicit drugs. Thus, the participants construct the figure-type for the non-adherent to antiretroviral therapy configuring a dimension imagery of social representation of subjects who have this attitude in the context of the syndrome. This figure type includes, in addition to the above mentioned, the following characteristics: disgusted with life, with problems and without a will to live.

Now if you stop taking or you are very depressed, do not want to live, irresponsibility, with your own life. (E8, male)

Ah, I don't know, the person is sad, they no longer want to know about life. (E10, male)

I think that the person who stops using the medication is an extremely weak. (E17, female)

My cousin that I brought with me, she is an addict and entered into depression and after that she knew of this problem also she wants to die, she started to do cocaine and spending nights on the street, she abandoned the treatment. (E23, female)

The inclusion of antiretroviral treatment in daily life is a difficult phase. This moment is marked by anxiety and difficulties in adapting to medication, mainly due to its side effects, which lead to insomnia, headache and nausea. In addition, the idea of the imminence of death can be a factor for non-adherence to treatment since death is inevitable and the use of the medicinal product does not mean the cure. Facing the body changes is also a difficulty facing the drug treatment^11,12. On the other hand, the treatment is taken as a second chance and a guarantee of improvement in quality of life. Initiation of treatment equivalent to a second diagnosis of an announced death, due to difficulties in daily life with the use of the antiretroviral drugs¹².

The participants believed that drug therapy is essential for the continuity of life, showing that the representation of living with HIV/AIDS maintains relations with antiretroviral therapy and the representations of this technology. Thus, thetherapy abandonment is directly related to the thought that death is next and wanting to die, and then, there is no more reason to live. Selfishness, a feeling that hinders the spirituality experience, is also cited as the reason for non-adherence, in addition to other elements, such as prejudice, loneliness, fear, despair and lack of family support.

I think that it's not just tis, I think that is selfishness of the people. [...] I think that it is because these people are afraid, because they do not believe that he will survive, thinks that the life of them ended, then prefers to end it faster. (E26, female)

I think it is prejudice, despair, loneliness, too, like I think I'm gonna die so I'll stop because I'm going to die anyway, lack of support, especially family. (E27, male)

According to another study, the countless difficulties perceived in all interactions with oneself and with elements of its context imply significant loss of their desire to live, even momentary and ends up occurring relaxation regarding the attention to treatment, which means a loss of meaning in staying loyal to the diagram of rigid schedules of medications. It also indicates the fact of not perceiving a sense in treatment by lack of symptomatology that enables the interpretation of absence of the syndrome¹³.

Despite the lack of adherence to therapy be characterized as a difficulty of experiencing and cultivate a spirituality, being expressed in not wanting more live, on the other hand, the exercise of spirituality can bring negative consequences associated with this adherence. An example of this is the noncompliance to treatment, associated with a belief in a possible spiritual or divine cure. The participants reported that they know people who already have gone through this situation and condemn this practice, seem to be aware of the importance of adherence to therapy.

Other people believe that God will heal, you get tired of hearing it here. [...] Sometimes abandon the treatment, on account of this possible divine cure. [...] You cannot leave and find that God will descend on earth and will heal you and if not you will only die. (E2, male)

I have heard it said that people who had already been healed, spiritually healed. [...] God said: ‘– do your part and I will help then he gave to us doctors, medicines, because you will give up and only believe in it? (E25, female)

This can also be observed in another study, which showed that the spiritual beliefs, in the same way that they can help in adherence to antiretroviral therapy, in certain everyday situations of life can configure themselves as barriers to join or start the process of using antiretroviral drugs¹⁴.

An important aspect is that, despite the criticism of the abandonment of drug therapy, the participants believed in divine healing. In this regard, there is the belief that as soon as the divine is powerful to grant the medications necessary to live well with HIV, as well as to give man the intelligence required for the discovery of the cure, is also to heal, if they so wish. Therefore, it is possible to observe the faith in divine healing through a direct and indirect relationship: the first refers to a relationship between healing and divine person with HIV/AIDS without mediation of medications or treatments; already in indirect relation to cure divine is expressed through the action of divine power on the man, so that find, through their cognitive skills (given by the divine) to cure, by science. Note, therefore, that the representation of AIDS is characterized by a polarity: on one side there is the incurable syndrome, with the appropriation of the reified universe of thought, on the other, the belief in healing, linked to values ​​and beliefs present common sense.

I believe in God that if you really deserve even can be healed, but God gave intelligence to man to study and discover. (E24, female)

The belief in the cure of AIDS is also discussed in another study whose authors concluded that, even knowing that the cure does not yet exist, infected people always envision cure in the future. This same group believes that, while the cure is not enough, there would be a palliative care, due to the use of the medicinal product associated with a frugal and healthy life¹².

Even that the abandonment to drug treatment due to possible cure divine is criticized, as previously stated, many believe in divine power not only to heal, but for the elimination of the disease, so it no longer exists

It is, I believe, I believe that God has the power to cure. (E3, male)

In the name of Jesus there will really be a cure for this disease and it will no longer exist in the country, I think it's great. (E4, female)

Despite the faith in divine healing being desired, developing rituals, such as the vote, the participants believed that it is a difficult situation to happen, in which only the divine has the power to give the cure of AIDS. Thus, there seems to be an acceptance of not being cured, if not contemplated by the divine with the cure.

Otherwise only one from up there, the one from above if you want it will heal me if he doesn't want too let it be. (E30, male)

Some say that God can heal all, we make our vow because we it is not dumb, but it is difficult. (E24, female)

Beside the belief in divine healing, there is also the hope of cure non-divine, i.e. it is a hope of finding the cure future, even if it is in other generations. Thus, even though we know that people are still dying from HIV infection, even in the face of stigma that permeates the disease and failures related to the discovery of his cure, there is a hope alive inside of people living with HIV/AIDS. Many believe that the cure already exists, and that it depends on those who know to disseminate it.

Always thinking that one day they will have a cure for this. [...] I have hope that one day still they will find the cure for this. (E5, female)

Curing AIDS is not impossible. [...] There has to be a cure in any event, somewhere, sometime someone will have the courage and will speak and I believe it. (E24, female)

Adherence to treatment assumes, symbolic and concretely, the struggle for life and the mobilizes to find meaning for living. The hope in the advancement of science reinforces their adherence to treatment and makes have the hope of winning the virus, being cured and able to achieve their goals in life and, more importantly, take care of their children¹³. Similarly, another study found that the hope of a cure permeates the acceptance of antiretroviral medication in the intention of controlling the disease while waiting for the emergence of the vaccine¹⁵.

It is observed, therefore, that the process of adherence to antiretroviral therapy is permeated by conflicts ranging from physical issues to the psychological and spiritual issues. It is noteworthy, therefore, the healthy aspect of spirituality, when belief in the cure produces a hope in people with HIV / AIDS and thus makes them want to live to experience this cure, and negative aspect when this belief induces individual abandonment of drug treatment.

CONCLUSION

As for the difficulty of adherence to antiretroviral therapy, we present different content according to their personal direction. Therefore, there are representations of the self, when it comes to the very difficulty of adherence, and the other, when referring to the problems of others. Regarding the first ones there is a negative attitude, mainly due to the adverse effects caused by the medication, especially those that affect the physical image of the body. On the other hand, the drug therapy expressed a positive significance - the prolongation of life. It should be noted, therefore, that spirituality is a predisposing factor for adherence to treatment with antiretroviral drugs, guiding the participants for a decision in life.

Regarding the difficulty of adherence and treatment abandonment by others, lack of love and care are themselves core contents of the representation about the non-adherent, indicating another difficulty - to express spirituality. It is clear, moreover, that it is for the participants to the representation of the living is directly related to antiretroviral therapy, in the same way the representation of the abandonment of treatment refers to does not want more live and, consequently, spirituality impaired. Despite the presence of a discursiveness with the incorporation of elements of the reified universe, with regard to the absence of physical healing for AIDS, an element of spirituality that stands out is the belief in divine healing.

It is noteworthy, therefore, the importance of the expression of a healthy spirituality without negative interference in the process of adherence to drug therapy. In this sense, it becomes evident the appreciation of the spiritual dimension as a focus of attention in the development of care practices of health professionals related to adherence to antiretroviral therapy for people living with HIV / AIDS.

In spite of this study presenting limitations related to the small number of subjects in a single scenario, the proposed objective was achieved. Thus, we suggest that further research may explore in other contexts and scenarios, the presence of spirituality in the experience of the health-disease process.

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