RESEARCH ARTICLES

Being a mother and HIV positive: a duality permeating the risk of vertical transmission

Carolina Lélis Venâncio Contim^I; Elis Oliveira Arantes^II; Iêda Maria Ávila Vargas Dias^III; Lílian do Nascimento^IV; Luisa Pereira Siqueira^V; Thalita Lima Dutra^VI

^I Student from the Nuring School of the Federal University of Juiz de Fora. Minas Gerais, Brazil. E-mail: carolvenancioad@hotmail.com
^II Student from the Nuring School of the Federal University of Juiz de Fora. Minas Gerais, Brazil. E-mail: elisarantes@yahoo.com.br
^III Teacher, Ph.D. from Maternal Child Department of the Nursing School at the Federal University of Juiz de Fora. Minas Gerais, Brazil. E-mail: vargasdias@hotmail.com
^IV Master degree student form the Graduate Programo f the Nursing School at the Federal University of Juiz de Fora. Minas Gerais, Brazil. E-mail: lilianurseufjf@yahoo.com.br
^V Student from the Nuring School of the Federal University of Juiz de Fora. Minas Gerais, Brazil. E-mail: luisasiqueira@uai.com.br
^VI Student from the Nuring School of the Federal University of Juiz de Fora. Minas Gerais, Brazil. E-mail: thatadutra@hotmail.com

DOI: http://dx.doi.org/10.12957/reuerj.2015.3849

ABSTRACT

Considered a global pandemic, Acquired Immune Deficiency Syndrome affects women and children due to the risk of vertical transmission during pregnancy. Accordingly, this study discussed women's experience of the duality of being a mother and a carrier of the Human Immunodeficiency Virus (HIV). The approach was quanti-qualitative, using semi-structured interviews of 35 mothers at a specialized support service in a town of the Zona da Mata, Minas Gerais, between September 2009 and March 2010. Content analysis of the transcripts revealed four themes: discovering oneself to be a mother and HIVpositive; fear of vertical transmission and prejudice; breastfeeding: dream or reality? and facing the implications of reverso da amamentação#?rapid weaning#early cessation. It follows that the duality of being pregnant and HIV positive calls for skilled care in which the nurse's role is essential in conducting this process.

Keywords: Nursing; HIV; pregnancy; breast feeding.

INTRODUCTION

According to a report published by the Joint United Nations Program of HIV/AIDS, the number of children born with the Human Immunodeficiency Virus (HIV) decreased 78% between 2001 and 2013¹. Being pregnant and discovering being HIV patient leads some women to adopt preventive actions of vertical transmission. An example of these actions is the recommendation of not breastfeeding among HIV-positive mothers. Although it is very effective, not breastfeeding leads recent mothers to feel pain and conflicts such as fear, sadness, grief and guilt. Because, besides bearing and transmitting the virus, they face the inability to breastfeed, feeling reduced on their wife and mother role in society².

Considering the possibility of vertical transmission of HIV can cause dysfunction in biological, emotional, psychological and social processes in HIV seropositive mothers - often interfering in the creation of bonding with their son, motherhood was delimited with the positive diagnosis for HIV as study object of this investigation.

The relevance of this study lies in the fact that for the realization of a comprehensive care, it is necessary that nursing understands and knows the social, cultural and psychological context in which HIV-positive mothers are. This should be part of the priorities of healthcare plans, since it is part of what is called qualified assistance, which certainly makes a difference in the lives of clients³. Equal treatment, free of labels and discrimination is translated in welcoming this women⁴. Therefore, the objective was to discuss the woman´s experience in the duality of motherhood and HIV positive patient.

LITERATURE REVIEW

The Acquired Immune Deficiency Syndrome (AIDS) can be understood as a pandemic that imposes implications for prevention, care and education process of its affected. In recent years, it guides the attention of the scientific community in identifying the individuals directly involved with the disease ⁵. Accordingly, data published in 2014 by the United Nations (UN) point to a 27% decreasing in the number of HIV-infected in the world, but on the other hand there was an increase of 11% in Brazil between 2005 and 2013⁶.

In Brazil, the evolution of AIDS affected women in a special way appearing the phenomenon known as the feminization of the epidemic, a term used to demonstrate women´s vulnerability to virus exposure³. When they are inserted within the AIDS many women of childbearing age were infected and, consequently, the children were also increasing in a group to HIV infection by vertical transmission⁷.

According to Ministry of Health, a vertical transmission of HIV is a situation in which the child is infected with the virus during pregnancy, childbirth or breastfeeding by the mother or other women with positive serology for HIV⁸.

It is understood that serological tests for syphilis and HIV are essential requirements during prenatal care, as directed by the Ministry of Health ⁹. Currently, a considerable quantity of cases of retroviral infection diagnoses among females occurs during pregnancy, by serological HIV screening, reflecting the adequacy of health policy on prenatal care, but at the same time, in contrast to the prevention of sexually transmitted diseases (STDs), as HIV¹⁰.

This is because there is an increase of notifications of heterosexual women infected with HIV. This scenario has occurred substantially in small to medium-sized cities within the country. They are women of reproductive age with low levels of income and education that contract the virus may promote an increase in cases of children infected through vertical transmission¹¹.

METHODOLOGY

It is a study of quantitative and qualitative approach, with the scenario of a specialized assistance service (SAE) of a city of Zona da Mata Mineira, where the STD/AIDS Program is developed.

After authorization by the department and approved by the Ethics Committee in Research of the Federal University of Juiz de Fora, Opinion 092/2009, the data collection phase was started through a semi-structured interview, in which open and closed questions have been addressed about the sociodemographic profile and data relating to the subject matter.

The subjects were mothers with positive HIV status, users of that service, up to 18 years old, who accepted voluntarily to participate in the study by signing the Consent Term (TCLE). The inclusion criteria was mothers with children less than two years (follow-up of children in service, for confirmation or not of vertical transmission).

Mothers who authorized the interview recording had preserved their identities, their names were replaced by the letter M, followed by an identification number. Therefore, ensuring the legitimacy, integrity and anonymity of the individuals to the principles recommended by Resolution 466/2012 of the National Health Council.

Data collection was conducted from September 2009 to March 2010. The number of participants has not been determined in advance, being defined by saturation point consisting of repeating the information passed by the participants, totaling 35 mothers.

At the end of the collection and transcription of data, there was the stage of statistical analysis measuring the absolute and percentage frequencies of the sociodemographic profile of participants. The analysis of this information in the open questions by describing the categories defined by the floating text reading generated the selection of content. Then, it began the exploration phase of the material, organized and gathered of data in record units by cutting and decoding of content. The choice of reporting units and categorization were used¹².

RESULTS AND DISCUSSION

The mothers were between 18 and 49 years old, family income ranging from less than one minimum wage to more than three minimum wages; only 2 (5.71%) had a family income of three salaries, but no more than five minimum salaries. It is noteworthy that 25 (71.4%) women lived with their partners, 19 (54.3%) in a stable union and 6 (17.1%) married. Regarding to children, 28 (80.0%) had more than one son alive.

As for education, most of the interviewees had not finished elementary school, including one participant was not literate. These shows a low level of educational instruction, hindering the individual to gain knowledge and information about her health and how to take care of herself.

The analysis of the interviews allowed the construction of four categories discussed below.

Discovering motherhood and HIV positive

In the first category, they were questioned about how and when was the discovery of HIV-positive diagnosis for HIV. Most participants reported to have occurred during the course of prenatal care. However, in some cases, the discovery also came from the appearance of some symptoms of the rapid testing, in maternity, at birth and through serological confirmation from her partner.

I had it from my boyfriend and I had no idea; the guy died of meningitis, then I went to see that meningitis was because of HIV that facilitated the infection, so I did the test when I saw that he was dead already knew and I was contaminated. (M3)

Early detection, even in prenatal care, is essential because it is possible to institute chemoprophylaxis in time to prevent vertical transmission. Studies show that the use of Zidovudine (AZT) in pregnant HIV-positive women during the prenatal and delivery, and the baby during the first six weeks of life reduces by two thirds the transmission of the virus to children¹³.

Concerning as how the discovery of HIV diagnosis was, participants reported unanimously as a very complicated and suffered situation, where many feelings were touched, with sadness as the main one. They said that they felt lost, recalcitrant, angry and even disappointed with the coldness of some health professionals to inform the diagnosis and refer them to specialized services.

Facing the imposed situation, a variety of reactions experienced were mentioned, from indifference to a complete despair, beyond the shock, surprise and disgust. Impotence facing the new reality also permeated this moment, which often culminated in partner blame for the transmission of the virus.

It is worth noting that almost all of the participants reported having contracted HIV from their partners, and many married or in a stable relationship, which contradicts the prejudice that transmission of the virus is closely related to female promiscuity.

For the study participants, the main aggravating of HIV positive diagnosis is the difficulty of revealing to their families. However, before the stigma of HIV, the possibility of having family support reduces obstacles to assimilate the diagnosis¹⁴.

It is important to show that health professionals should act to facilitate the disclosure of diagnosis and confronting this experience, minimizing emotional problems caused by HIV-positive diagnosis, both the patient and their families.

The impact of social relationship and the fear of vertical transmission

This second category reveals that experiencing motherhood infected with HIV is a situation permeated by many fears. The participants reported being afraid of prejudice of society, especially to their children; that their family members discover their diagnosis; that their children become orphans; and that their children be contaminated with HIV, mainly through mother to child transmission.

My biggest fear is prejudice, not for me, because for me whatever, but for my children, as they will be treated if they will be respected, if the society become aware of my disease. (M7)

I was terrified because I thought that this disease kills from day to night and I'd never see my children, my biggest fear was thus God takes me before them. (M9)

The guilt for putting the child at risk, fear of infecting him and he will die as a result of infection, are contrasted with the idealized conception of maternity, which gives women the ability to generate life and assume a privileged social place. In this situation, it is evident breastfeeding. Breastfeeding is not only understood as a biological act, but also as several factors with different effects on emotional and social dimensions of psychosocial involved^15,16.

Prejudice from family and society to their diagnosis leads many mothers to not reveal their condition to prevent her and her son being targets of social and family discrimination. Thus, they delegate the care of their children to people very close avoiding others to know of their HIV status¹⁷.

For every difficulty experienced by HIV-positive mothers, the need for a humanized and effective nursing care facing these vulnerable women and frightened by prejudice and possible vertical transmission is observed. One strategy would be to create support groups in services that meet HIV positive mothers to the health professional, providing closer care of the reality they experienced.

From participation in groups, none of the respondents participated in a support group for people with HIV, but most expressed interest in participating, believing it would be an opportunity to get more information, reception and exchange of experiences. Participants who showed no interest in participating used the most varied reasons, such as fear of someone discovering their diagnosis, lack of time and few financial resources to fund their transportation to the service or group.

[...] it worth it, it's always good to learn, as much as we know, you know? Because there are times that I get a little lost because I cannot count on help of my family, you know? (M11)

I would like to participate, but I cannot afford it; It is hard for me to come here to get to participate, by financial conditions, I live far away and have a lot of work at home. (M15)

By not directing actions towards mothers and children, the team lost valuable opportunities to intervene preventive and substantially in the empowerment of these mothers and therefore the health promotion of their concepts both in pre-natal, delivery and postpartum¹⁸.

Breastfeeding: dream or reality

It was found that most mothers interviewed had already gone through the experience of breastfeeding, for having children before HIV infection and/or unaware of their diagnosis in earlier pregnancies.

Mothers who have not gone through this experience, report not breastfed their children because knowing their diagnosis. All interviewed showed up aware of the risk of transmission of the virus in breast milk and mentioned it as painful as it represents the reverse of breastfeeding, this milk has not been offered to the child.

[…] a primeira eu amamentei, agora, a segunda eu não pude porque fiquei sabendo do problema. (M16)

I could not breastfeed, there was kind of weird, weird, but just giving the bottle we know, we feel, when it is the mother we feel that she is looking at. When she cries, I make the bottle and give it... and she is still. (M13)

[...] The first I nursed now the second I could not because I learned of the problem. (M16)

For mothers who have gone through breast-feeding experience, the fact that they can no longer offer the breast was difficult because they were afraid to lose, in part, the role of motherhood, including referring feeling of sadness. Mothers who never had breastfeeding experience, the time of reverse was presented in a less negative way, leading them to feel indifference toward this moment. For some women, however, inexperience intensified the negative feelings because they were faced with the impossibility of passing through breastfeeding, a dream that inhabits the female universe.

And I felt helpless, I cannot explain right, I was very sad when I knew that he could not breastfeed, but there is how to give love in a different way, you know. Sometimes I see mothers breastfeeding their children, the baby is on her chest and the mother is looking to other way, she is paying attention and it does not mean much. The love that I feel is not a milk that will replace it. (M2)

HIV infection and the inability to breastfeed her child naturally lead to HIV-positive mother to face biological, emotional, psychological and social processes arousing in them feelings of fear, sadness, pain, grief and guilt³. Thus, the ideal would be that all HIV-positive pregnant women receive during prenatal care, not only the instructions on the risk of transmitting the virus to the baby as the procedures that must be observed to avoid breastfeeding the child, such as bandaging breasts, drugs for drying breast milk and the indication of infant formula to replace breast milk. Such information on prenatal would prevent the childbirth become traumatic for these pregnant women⁹.

The way the health team welcomes and transmitted guidelines influence the way mothers adhere to care and deal with breastfeeding reverse implications. It is noticed that, despite the strong impact of this process, the emotional bond with the children remains present and the fact of not being able to breastfeed does not affect the role of mother and or prejudice the maternal-filial relationship.

Facing the implications of breastfeeding reverse

The medical indication for the suppression of lactation was held for most mothers. However, one had no such indication and another did not produce milk. Among the indications, bandaging breasts is the most suitable, but there was also an indication of oral and injectable medications and to the use of more than one technique simultaneously. The timing of that statement occurred more intensely in prenatal care, but was also carried on motherhood, during postpartum.

It was found that the predominant feeling of mothers, when going through the drying procedure of their milk, was of sadness, followed by conformism. Conformism related to awareness of the risk of vertical transmission.

Bandaging my chest was very painful, I had an engorged breast, I had fever and when I got home I took two pills and in one week, my milk dried up. (M10)

It is psychological, it does not hurt, but it's like taking a piece of me, depriving us of that. (M12)

It is important to inform to mothers infected with HIV, even in prenatal care the risk of transmission through breastfeeding, because it allows the pregnant woman time to assimilate the fact of not breastfeeding the baby, deciding whether or not to use any drying technique milk, as well as choosing which type of food will be provided to the child instead of breast milk¹³.

It is noticed by the speeches that the industrialized artificial milk was the main food used in bottle-feeding, due to free distribution by the government, which is seen by participants as an important help. Cow´s milk and soy milk are also indicated as breastmilk substitutes.

However, for mothers is embarrassing and stressful time to offer a bottle to their children before people uninformed of their HIV status, because that is when occurring complaining on the natural breastfeeding. This makes mothers to omit the fact that they are not nursing or lie about their real reasons.

I spoke my milk dried up. Because they did a lot of question and even they wondered why my breast were dried. But I always was with her there, quiet to tell them. (M18)

I received the guidance of the nurse to say that I was taking strong medication and so I could not breastfeed my son. (M20)

The social prejudice around HIV is associated with the very origin of the epidemic that was supposed to reach only the so-called risk groups (homosexual men, injection drug users, transfusion of blood products receivers). Such an assumption made in the subconscious of people the idea that if the woman did not have a promiscuous sexual behavior, she would not get the virus³.

CONCLUSION

The study results reveal discovering a mother and HIV-positive, highlighting the impact of the diagnosis by prejudice and fears of society, reinforcing the fear of vertical transmission to her fetus. Being a mother and HIV-positive translates feelings arising from indifference to fear to disclose their diagnosis to family and close people.

The fear of having their names associated with HIV is so expressive that even enlightened, some mothers have felt prevented from registering their stories, which is a limitation of this study. Although not agreed to participate, it was evident the need for these women to vent their stories and conflicts full of social prejudice.

Breastfeeding is understood as a dream that cannot be part of reality. For those who have breastfed in previous pregnancies, the disease is a privation to assume her role as mother. For those who did not go through this experience, it becomes indifferent - the key is to not transmitting the disease to their children.

The implications and coping mechanisms presented in breastfeeding reverse were also verified, which generate the need for skilled nursing care. Therefore, it is seen the importance of conducting a quality prenatal care, since mos of the interviewees discovered HIV positive during this period.

In conclusion, the nurse is essential in the execution of a humanized care to HIV-positive mothers. Besides the importance of the guidelines provided to them, the nurse provides subsidies to face major difficulties experienced by these mothers. Therefore, it is essential an approximation of the reality of these women, listening to them and allowing them to express feelings and doubts. Thus, it becomes possible to clarify and realize possible risks to health of the mother and son, and create measures to make softer the experience of this reality.

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