RESEARCH ARTICLES

Pregnant women's experience of being seropositive for HIV/AIDS: prejudice, pain, trauma and suffering at the discovery

Ana Paula Dantas Silva Medeiros^I; Verbena Santos Araújo^II; Marina Nascimento de Moraes^III; Sandra Aparecida de Almeida ^IV; Jordana Nogueira de Almeida^V; Maria Djair Dias^VI

^I Nurse. Master degree by the Graduate Program in Nursing from the Federal University of Paraíba. Member of the Study and Research Grpup in Community Mental Health. João Pessoa, Paraíba, Brazil. E-mail: ap-dantas@hotmail.com
^II Nurse. Master degree and Ph.D. by the Graduate Program in Nursing from the Federal University of Paraíba. Professor at the Nursing School in Natal/ UFRN. Member of the Study and Research Group in Community Mental Health. João Pessoa, Paraíba, Brazil. E-mail: verbena.bio.enf@hotmail.com
^III Nurse. Master degree by the Graduate Program in Nursing from the Federal University of Paraíba. Member of the Study and Research Grpup in Community Mental Health. João Pessoa, Paraíba, Brazil. E-mail: ninamoraes_@hotmail.com
^IV Nurse. Ph.D. by the Graduate Program in Nursing from the Federal University of Paraíba. Professor at the Graduate Program in Nursing from the Federal University of Paraíba. Member of the Study Group in HIV/AIDS, Health and Sexuality. João Pessoa, Paraíba, Brazil. E-mail: sandraalmeida124@gmail.com
^V Nurse. Ph.D. in Nursing and Publci Health by the Nursing School of Ribeirão Preto. Professor of the Graduate Program in Nursing from the Federal University of Paraíba. Leader of the Study Group in HIV/AIDS, Health and Sexuality. João Pessoa, Paraíba, Brazil. E-mail: jalnogueira31@gmail.com
^VI Nurse. Ph.D. in Nursing by the University of São Paulo. Associate Professor I of the Graduate Program in Nursing of the Federal University of Paraíva and Deputy Leader of the Study Group in Community Mental Health. João Pessoa, Paraíba, Brazil. E-mail: mariadjair@yahoo.com.br

DOI: http://dx.doi.org/10.12957/reuerj.2015.17918

ABSTRACT

This qualitative study, which aimed to learn the life experiences of pregnant and postpartum women following their discovering themselves seropositive for the human immunodeficiency virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS), was conducted at the Lauro Wanderley University Hospital in João Pessoa, Paraíba. The empirical data were obtained from interviews of twelve study participants, from July to September 2012, using the Testimonial Oral History approach, and were discussed through interpretive thematic analysis. As a result, it was observed that the women surveyed expressed conflicting feelings, such as life and death, joy and sorrow, fear and uncertainty. It was concluded that this study is of great importance, because it brings out the life experiences of pregnant women and mothers who are seropositive for HIV/ AIDS, with a view to fostering discussion of ways these women cope after discovering the disease.

Keywords: Acquired immunodeficiency syndrome; postpartum period; women's health; oral history.

INTRODUCTION

The speed that the Acquired Immune Deficiency Syndrome (AIDS), caused by the Human Immunodeficiency Virus (HIV) spread in the world, the severity that patients are affected and the potential lethality of the disease, are concerning not only to the directly affected, but all segments of society. Actually, prejudice emerges from the beginning of the epidemic, since the disease belongs to marginalized groups of society. This attempt at marginalization can be seen as part of the heteronormativity of society and the focus on the nuclear family¹.

Thus, addressing the theme AIDS involves complex issues, specifically in women, because specific issues will be faced as values, fear, marriage, motherhood, gender relations and sexuality that permeates the entire epidemic¹.

Fear accompanies these women permanently, making them victims of oblivion and invisibility, requiring them constant attention, every day and self-watcher, not discriminating environments in which they live. Feelings of guilty, afraid, stigmatized and needed to hide, are feelings that will certainly not help to improve the psychological health of the women living with HIV/AIDS, hampering to cope with the disease².

The pregnancy of a woman who has HIV/AIDS transcends to purely technical issues. Its occurrence is not linked only to the fear of the risk of infection to the baby, but at social risk that is symbolically associated with reproduction in the presence of the virus. Fear of looking at society and experiencing prejudice makes them more susceptible to a number of problems, because pregnancy is a time of great changes in the lives of women and requires special care.

Based on this panorama, this research aims to meet women´s life experience of pregnant women/recent mothers from the discovery of seropositive situation for HIV/AIDS.

LITERATURE REVIEW

Since its discovery, the epidemiological profile of AIDS, has undergone transformations as their way of dissemination³, without characteristics as a disease restricted to specific groups. Such change was due to the multiplicity of factors that modulate the epidemic, which it was uniformity due to increased occurrence in heterosexual men, women, socially vulnerable people, the elderly and young people, triggering process termed as pauperization of the epidemc⁴.

Analyzing the AIDS cases in pregnant women reported in Brazil by 2014, there were 84,558 cases, and the most representative was comprising the following age groups: 20-24 years old, with 24,172 (28.9%) and 25 to 29 years old with 22,732 (27.2%). Regarding education, it is noted that 27,122 (39.9%) cases have not finished elementary school and 11,958 (17.6%) with incomplete high school⁵.

The increase in cases of women living with HIV/AIDS has complications for gestational phase and the increase of vertical transmission rate, exposing the fragility and difficulty of implementation of preventive actions and appropriate grievance handling of the different health contexts.

METHODOLOGY

To understand the objective of this investigation, it was decided to study the phenomenon from the requirements of Oral History (OH) adopted by Bom Meihy ⁶. This was chosen because it is able to grasp the meaning of life experiences, expressed through testimonies, being a systematic process and previously planned on a project in which orality is registered and transported to the written, allowing to realize the social context and individual analysis, which should be linked and interdependent⁷. The option of working with the OH witness in one of its interfaces, was due to its applicability in dramatic experiences, what is observed in the testimonies of women participating in the study, before the theme adopted.

As scenario of this investigation, Lauro Wanderley University Hospital (HULW) in the city of João Pessoa, Paraíba was chosen, because it is a referral center for the treatment and monitoring of pregnant and postpartum women with HIV/AIDS.

Respecting the OH assumptions, the target community was formed by HIV positive women for HIV/AIDS entered in the Specialized Outpatient Service - Mother and Child (SAE/MI) of HULW. The selected group was formed by pregnant women and mothers and the network was composed by HIV positive women for HIV/AIDS, identified by the initial letter of their marital name, then the number for the interview carried out. Interviews were conducted in the months of July to September 2012, with 12 participants.

The discussion and analysis of empirical material was subsidized based on the technical content analysis of Bardin⁸, which consists of qualitative assessment of content, defined as a set of communication analysis techniques and aims to overcome the uncertainties and enrich the reading of data collected. Its objective was to critically understand the meaning of communication, its manifest or latent content, explicit or hidden meanings ⁸.

As analysis steps, there were transcription and reading any empirical material produced, transcription and construction of recording units and from them, the context units were conducted. Then, the themes and the interpretation followed by categorization of information were held, resulting from this process, the following thematic area: Experience seropositive for HIV/AIDS: the pain, the trauma and suffering of discovery.

This study met the requirements proposed by Resolution 466/2012 of the National Health Council⁹, which provides for standards and regulatory guidelines for research involving human beings. Before, the research project was registered in Brazilian Ministry of Health Platform and approved by the Research Ethics Committee of the University Hospital Lauro Wanderley, according to CAAE 02367612.4.0000.5183. Attesting the veracity of the facts, all the subjects of the investigation signed the Letter of Assignment and the Consent Form.

RESULTS AND DISCUSSION

Experience of seropositive for HIV/AIDS: the pain, the trauma and suffering of discovery

The events that marked the history of the epidemic evoke death, experience that the subject is unaware or know through other experience, not being a record of what happened to himself. Considering the inability to imagine their own death, when trying to do it, it can be seen that the subject is present as a spectator. Thus, it is inferred that the present distress in HIV-positive women is related not only by the state in which they are, but the situation of the disease itself. It is noteworthy that we are never sufficiently ready to accept death, even considering its inevitability¹⁰.

In the unconscious, immortality is something that prevents the human being to think and talk about death, an experience in which never passed, placing him against his own limitations, challenging his omnipotence. However, facing something unknown it is impossible not to imagine that this natural phenomenon will arrive faster¹¹. The following statements address the thought of some women when they discovered being seropositive and faced with this challenge:

[...] I wanted to kill me, but I did not do it because she was pregnant. (J, 1)

[...] I wanted to die, I thought from that moment nothing else would make sense [...]. (R, 2)

The paradox life and death that becomes part of the experience of women living with HIV generate great anguish, since the mother´s representation, as a woman who gives life is opposed to that of dangerous woman, generating huge conflict in the mind of the individual in relation to the socially expected roles¹².

In OH, Vital Tone corresponds to phrases that serve as the epigraph for the interview reading. In this way, some collaborators report the externalization of the new reality facing the fear, despair and trauma, from their Tom Vital, as shown below:

[...] The world is over [...]. (I, 3)

The woman talking above had her diagnosis 5 years ago and found that she was very difficult to discover the presence of the virus in her body. In maternity, the rapid HIV test was held, positive diagnosed. She reported that the birth of her son started to have no more importance to her, then depressed actions, fear and suffering on this new discovery caused her vital tone was compared to a great emotional catastrophe.

The psychological trauma is the result of a situation experienced, witnessed or confronted by the individuals in which there was a threat to life or physical and/or psychological integrity of themselves and people connected with them. When designing actions taken as trauma, people try to keep track of internal threats. However, this perspective on the disease, together with the fact that the virus infection of HIV/AIDS be potentially fatal, difficult to understand the disease for most of the society¹³.

Learning to express what the feeling are at that moment becomes very difficult for people who are afraid, or going through some traumatic process. The word is not always the most interpretive means to grasp the anguish of certain individuals, it is important to know that there is difference in the way of thinking, speaking and expressing. When people face with some unexpected and unacceptable information, they traumatize the moment and think negatively.

The trauma of the Greek etymological root means injury caused by an external agent, but this concept migrated after Freud´s studies in 1895 and today they are connected to something internal caused by external. However, Freud joined the internality to externality as causing agent, which depict fragments of speeches on the discovery of HIV/AIDS seropositive¹³.

Among the components of counseling, emotional support is critical to contribute in addressing emerging issues after the discovery of HIV status, especially the fear of death and disastrous expectancy¹⁴.

It is observed that living with HIV, women experience adverse feelings, which can be translated by individual states arising from the great emotional upheaval caused by the confrontation to the virus. Such feelings reflect the impossibility of forgetting seropositive as the disease carries a significant burden of stigmatization, identified the lack of job opportunities, repentance, separation from friends, family discrimination, impairment of diseases that cause limiting physical consequences, besides the feeling of fragility against prejudice, as seen in the following quotes:

To this day, it is still difficult. I had and have fear of prejudice, people just think I was wrong, because people connect the diagnosis of AIDS with prostitution, they would think that I was a prostitute! (M, 4)

[...] One day I decided to tell to a colleague, only after I said it was a lie, to know what would be the reaction, it was never the same. Even I say that it was a lie. (R, 2)

Knowing to be carrying a lethal disease causes a variety of distressing feelings, such as fear, shame, anxiety and depression. Associated with all these emotions, they experience stigma, prejudice, isolation and often abandonment¹⁵.

Stigma and discrimination are the subjects´ devaluation that cast social injustices and fortify existing ones. Having a life without stigma and discrimination of any kind is a basic human right and should be respected. Therefore, being a patient with HIV/AIDS cannot and should not be considered reason to disrespect this right¹⁶.

It is observed in the following report, that discrimination starts from the family is externalized to society, fear of prejudice, loneliness and abandonment accompany these women after the positive result to the HIV virus.

[...] My mother is racist [...] so think about it, who knows her knows, then if I told her about the diagnosis, she would not accept me, no one would accept me [...]. (F, 5)

[...] I'd rather not tell, my family is very biased, I'm afraid of being rejected, people have a lot of prejudice who is HIV positive, treating the person as a "dog". (I, 3)

The family is characterized as the base center of society, where people are born, grow and acquire values that serve as the foundation for the present and future life. The importance of family support network for pregnant women is something portrayed not only by conventional wisdom. It is noteworthy that the father´s participation in family life, the paternal grandparents and, in particular, maternal care in pregnant/postpartum women and the baby as well as the psychological support received were considered of great importance in different studies^17,18.

Part of the AIDS epidemic regarded as the most explosive, harmful and damaging would be of social, cultural, economic and political responses, which have been characterized by exceptionally high levels of stigma, discrimination and denial also collective¹⁸ as reinforces the vital tone of the collaborator as follows:

[...] I do not believe [...]. (F, 5)

A much-mentioned strategy by the study participants was denial, that is, a way to avoid thinking about the problem of seropositive and stay thinking only in the baby. The sense of failure and insecurity eased when such pregnant women shared the diagnosis with family members and especially when they find the necessary support.

Denial is a defense mechanism operated unconsciously used to solve an emotional conflict and to relieve anxiety. However, it causes the rejection of some important elements to everyday life, as the denied feelings can be thoughts, desires, needs, or even realities¹⁹.

Through the testimonies of the collaborators, it is observed that the fear that the pathology causes death was present in most speeches, as well as not accepting the diagnosis by partners, showing that the degree of autonomy and flexibility in the performance of roles gender remains directly proportional to the degree of decision and the possibility of development of the crisis. Despite all the advances in treating the disease in the past, discovering infected with HIV continues to generate a great emotional impact and vulnerability²⁰.

At the time I thought that I would die soon [...]. (M, 4)

It was very difficult, I wanted to kill myself [...]. (I, 3)

Among the main psychological sequels caused by the impact of the specific traumatic experiences are fears that become very common when they reach psychological trauma, compromising the individual´s quality of life. This process, called the Post-Traumatic Stress Disorder (PTSD), may emerge from events such as childbirth, miscarriage, the discovery of AIDS, cancer, among others¹³.

Prejudice and discrimination against population groups already stigmatized and discriminated because of their race, gender and/or sexual orientation, irresponsible and biased news media related to HIV/AIDS, awaken numerous biased opinions and preconceived that cause negativity and rejection of people with this disease. These issues become so present in the life of the woman with HIV, which may affect the way they will experience motherhood.

This fear of being stigmatized or excluded was quite evident in the speeches of the collaborators, who did not hesitate to testify:

[...] I am afraid of people, no one would accept me, they were pointed me in the street, fame on the street would be higher, everybody would scold me. (I, 3)

[...] Everyone is biased, if you tell, they go away [...]. (AC, 6)

Even characterized as a catastrophic event in people´s lives, the diagnosis of AIDS is permeated by representations associated with rapid deterioration and death. Added to these issues, although there is still no cure and medication while improving the quality of life of people, they do not guarantee a life without virus²¹.

In comparison to the impact of something new and mainly unknown and fearful, the tendency of people is the fear of the unexpected, associating the impact of the discovery of the reactions definitions of who they really are. In other words, the fact of women being infected with HIV/AIDS will make her feel different and therefore not worthy of respect, dignity and confidence. Through observation and life testimony of each woman and each postpartum woman, it can be seen sufferings are inserted between cries, silence, trembling speech, response denying that reminded her suffering and even laughter. They were ways of showing the pain, trauma and memories that belong to each individual, but also reflected in all of them. Similarities in different ways, different beauties, difficulties in life, struggles and victories children: the desire to be a mother always was stronger.

CONCLUSION

It was found that face the diagnosis of seropositive generates a big impact on women´s lives and the changes resulting from that news make possible the emergence of different feelings that arise at different intensities and manifestations, making them even more present when associated with idea of pregnancy, causing trauma, pain, fear, prejudice and discrimination.

Such situation shows many possibilities for professional work in the health field and in particular for nursing. Thus, it is considered important to implement interdisciplinary actions that can sustain a proposal for practical intervention and responsible with regard to the care of these women, mothers, children and families, focusing on care as an ethical assumption and valuing life.

Because it is a topic still controversial and stigmatizing the study, there are some limitations regarding the accession of a larger number of women for the proposal, as the fear and uncertainty may have contributed to restrict the amount of respondents. However as this is a qualitative research, there is no need for a larger universe to do it.

It is concluded that this study is very important because it highlights the life experiences of pregnant women and HIV-positive mothers, because it values the ways of coping used by these women due to the discovery of the disease. Thus, it is expected that the presented approach can see new ways of looking at problems and perhaps causing the society to review its positions.

REFERENCES

1.Julião TC, Aguiar CN, Araújo FM, Silva RM. O cotidiano de mulheres e a prevenção da AIDS. In: Damasceno MMC, Araújo TL, Fernandes AFC. Transtornos vitais no fim do século XX: diabetes mellitus, distúrbios cardiovasculares, câncer, AIDS, tuberculose e hanseníase. Fortaleza (CE): FCPC; 1999.

2.Ministério da Saúde (Br). Secretaria de Vigilância de Saúde. Programa Nacional de DST e Aids. PCAP: Pesquisa de Conhecimentos, Atitudes e Práticas na População Brasileira. Brasília (DF): Editora MS; 2010.

3.Szwarwald CL. Estimativa do número de pessoas de 15 a 49 anos infectadas pelo HIV, Brasil, 2004. Boletim Epidemiológico AIDS. 2006; 3: 11-5.

4.Parker R. Na contramão da AIDS: sexualidade, intervenção, política. Rio de Janeiro: ABIA; 2002.

5.Ministério da Saúde (Br), Secretaria de Vigilância em Saúde, Departamento de DST, Aids e Hepatites Virais. Boletim epidemiológico HIV/Aids. Ano III. Brasília (DF): Ministério da Saúde; 2014.

6.Bom Meihy JCS, Ribeiro S.L.S. Guia prático de história oral: para empresas, universidades, comunidades, famílias. São Paulo: Contexto; 2011.

7.Bom Meihy JCS, Holanda F. História Oral: como fazer e como pensar. São Paulo: Contexto; 2007.

8.Bardin L. Análise de conteúdo. Lisboa (Pt): Edições 70; 2009.

9.Conselho Nacional de Saúde (Br). Resolução no. 466, de 12 de dezembro de 2012. Brasília (DF); CNS2012.

10.Freud S. Reflexões para os tempos de guerra e morte. Rio de Janeiro: Imago; 1975.

11.Veras JF. Adoecimento psíquico em mulheres portadoras do vírus HIV: um desafio para a clínica contemporânea. Psicologia Ciência e Profissão. 2007; 27: 266-75.

12.Cotovio VV. HIV/Sida: da Prevenção ao Apoio. Revista Análise Psicológica (São Paulo). 1992; 1: 90.

13.Peres J. Trauma e superação: o que a psicologia e a neurociência e a ensinam. São Paulo: Roca; 2009.

14.Araújo MAL, Queiroz FPA, Melo SP, Silveira CB, Silva RM. Gestantes portadoras do HIV: enfrentamento e percepção de uma nova realidade. Cienc Cuid Saude. 2008; 7:216-23.

15.Carvalho CML, Galvão MTG. Enfrentamento da Aids entre mulheres infectadas em Fortaleza – CE. Rev esc enferm USP. 2008; 42: 90-7.

16.Medeiros APDS. Mulheres gestantes e puérperas soropositividade para HIV/Aids: História Oral Testemunhal [dissertação de mestrado]. João Pessoa (PB): Centro de Ciências da Saúde, Universidade Federal da Paraíba; 2012.

17.Vieira AM, Padilha MICS. O cotidiano das famílias que convivem com o HIV: um relato de experiência. Esc Anna Nery 2004; 11: 351-7.

18.Parker R, Aggleton P. Estigma, discriminação e AIDS. Rio de Janeiro: Associação Brasileira Interdisciplinar em AIDS; 2006.

19.Townsen MC. Enfermagem psiquiátrica conceitos de cuidados. 3ª ed. Rio de Janeiro: Guanabara Koogan; 2002.

20.Cardoso AL, Marcon SS, Waidmani MAP. O. Impacto da descoberta da Aids. Rev enferm UERJ. 2008; 16: 326-32.

21.Duffy L. Suffering, shame, and silence: the stigma of HIV/Aids. J Ass Nurs Aids Care. 2005; 16(1): 13-20.