ORIGINAL RESEARCH

HIV diagnostic disclosure in prenatal care: women's difficulties and coping strategies

Petra Kelly Rabelo de Sousa Fernandes^I; Karla Corrêa Lima Miranda^II; Dafne Paiva Rodrigues^III; Léa Dias Pimentel Gomes Vasconcelos^IV

^IPhD student in Clinical Care in Nursing and Health at the State University of Ceará. Fortaleza, Ceará, Brazil. E-mail: petrinha_kelly@hotmail.com
^IIPhD in Nursing. Professor at the State University of Ceará. Fortaleza, Ceará, Brazil. E-mail: kfor026@terra.com.br
^IIIPhD in Nursing. Professor at the State University of Ceará. Fortaleza, Ceará, Brazil. E-mail: dafneprodrigues@yahoo.com
^IVMaster in Clinical Care in Nursing and Health. Professor of the Faculdade Metropolitana da Grande Fortaleza. Fortaleza, Ceará, Brazil. E-mail: leadpg@ig.com.br

DOI: http://dx.doi.org/10.12957/reuerj.2017.12114

ABSTRACT

Objectives: to investigate how women experience revelation of a diagnosis of human immunodeficiency virus (HIV) in prenatal care, and to identify coping strategies to deal with being seropositive. Method: in this qualitative, descriptive study of six women notified as HIV-positive during pregnancy, at a hospital in Fortaleza, Ceará, data were collected by semi-structured interview, and treated by content analysis. Ethical concerns were met, and the project was approved (No. 11222424-5). Results: the complexity of discovering HIV during pregnancy was understood from three categories: difficulties after diagnosis; concealing HIV seropositivity; and strategies for coping with seropositivity. Conclusion: nurses' support is of fundamental importance, so that they can understand the context of these women's lives and suit care to their singularities, so as to achieve better quality nursing care.

Keywords: HIV Seropositivity; women; pregnancy; prenatal care.

INTRODUCTION

The increasing number of women infected with the Human Immunodeficiency Virus (HIV) or the Acquired Immunodeficiency Syndrome (AIDS), especially at childbearing age, is worrisome due to the real possibility of vertical transmission of the virus during pregnancy, childbirth or breastfeeding¹.

In order to prevent vertical transmission of HIV, it is recommended that pregnant women should be tested during prenatal care and, if the result is positive, they should receive chemoprophylaxis with antiretrovirals¹.

The experiences of a researcher in a HIV/AIDS outpatient clinic evidenced a concern of the professionals with adherence to the antiretroviral therapy as a strategy to reduce this form of virus transmission. However, HIV-positive pregnant women seek not only drug treatment, but also people who welcome and understand them in their totality, as women and mothers with unique characteristics and who need a different assistance from health professionals.

From this perspective, nursing interventions can extrapolate their instrumental character and be directed to a clinic of the subject, in which the focus of healing is shifted to a perspective of deconstruction/reconstruction of meanings. This possibility of a care-centered clinic may be the opening of a fertile ground in which nursing can develop its potential².

The present study is justified by the concern about this experience and the coping strategies encountered after the discovery of HIV infection in the gestational period. This concern arose after the researcher witnessed the revelation of the positive HIV test result for a pregnant woman undergoing prenatal care in the nursing boarding school during the undergraduate course.

In light of these observations, the objective was to investigate how women experience the diagnosis of HIV in prenatal care and to identify ways of coping with seropositivity.

LITERATURE REVIEW

Prenatal care emerges as a way to welcome a woman from the very beginning of her gestation and to offer appropriate clinical and psychological support to this period of physical and emotional changes.

In addition, an important goal is to prevent and treat complications throughout pregnancy, such as HIV infection. Accepting to carry out the HIV test is not always an easy choice, since this test leads to different feelings, such as fear and concern about the possible positive outcome, also triggering the fear of prejudice and social discrimination.

In this way, women with HIV-positive may face several difficulties after disclosure of seropositivity. These difficulties go beyond the non-acceptance of diagnosis, since they involve marital, family and social relations.

One of the difficulties of these pregnant women in believing in the HIV diagnosis is because their physical condition does not demonstrate signs of the disease and because they believe they maintain sexual relationships within established patterns of society³.

One of the greatest difficulties may be discrimination and lack of support from the partner and/or family, which may make it more difficult to face treatment and social interaction.

Studies have shown that family members play an important role for the carrier of HIV or AIDS to adapt to the new reality. In this way, withdrawal from family can lead to considerable suffering for these pregnant women^4,5.

Another issue faced by these women is the difficulty to adhere to and follow treatment with antiretroviral therapy, not only because of the side effects, but because the use of these drugs may reveal their serological condition for those who do not share the diagnosis.

Several factors have been associated with adherence to treatment, including psychosocial factors, related to the person, their socioeconomic profile, their schooling and their beliefs, as well as the difficulty in maintaining continuous medication use, which may lead to reduced adherence to drug treatment⁶.

Faced with these difficulties, women have begun to develop alternatives to deal with the reality of infection.

Some studies have pointed faith in God, denial and avoiding thinking about the problem as strategies that women have developed to withstand the suffering generated by the diagnosis. In addition, family support, adherence to drug treatment and to clinical and laboratory follow-up, the adoption of preventive behaviors, such as the use of condoms, the incorporation of leisure activities, interacting with other people with HIV in help groups and the presence of children were also recommended^7,8.

Some of these feelings and difficulties regarding the diagnosis last through the entire gestational process. HIV-positive pregnant women need special attention and differentiated care from health professionals, not only to be monitored regarding the antiretroviral therapy, but mainly because they experience a unique phase of life that requires emotional support, crucial to face the challenges arising from the diagnosis.

METHODOLOGY

This is a descriptive research with qualitative approach. This approach is concerned with a level of reality that cannot be quantified, that is, it aims at understanding and explaining social dynamics, working with a universe of beliefs, values, attitudes, motives and aspirations⁹ .

The study site was a district hospital in the city of Fortaleza - CE and the subjects were all women who were diagnosed with HIV/AIDS during the gestational period between January and October 2011.

Inclusion criteria were women aged 18 years or older who had found out seropositivity during prenatal care. Of the 26 women notified, 14 met the inclusion criteria. However, since the interviews were conducted on the days of the consultations, according to the scheduling of the Medical and Statistical Assistance Service (SAME), it was not possible to conduct the interview with five women, since they had not scheduled appointments. Also, three did not attend the consultation during the collection. Therefore, the research was performed with six women, named in the study by the letter I (interviewee) and by numbers 1 to 6 (I1, I2, I3, I4, I5, I6).

The collection was performed from April to December 2011 through a semi-structured interview whose script contained identification items, obstetric data and subjective questions, such as about the feelings after the diagnosis was revealed and strategies to deal with seropositivity.

For the treatment and interpretation of data, the Bardin content analysis technique was used. This analysis was organized in three stages: the pre-analysis; the exploration of the material; and the treatment of results and interpretation. In the first stage, the systematization of the initial ideas and a floating reading were performed to obtain an overview of the theme. In the second, after an exhaustive reading, the choice of record units related to the research object was carried out. In the last step, the analysis itself was carried out, through categorization¹⁰.

The emerging categories of the present study were: difficulties after diagnosis; hiding HIV seropositivity and strategies for coping with seropositivity.

The research began after the approval of the project by the Research Ethics Committee of the State University of Ceará (UECE) under the process No. 11222424-5. Women were invited to participate in the interview and their confidentiality and the right to participate or not were guaranteed¹¹.

RESULTS AND DISCUSSION

Characterization of subjects

The participants' ages ranged from 20 to 34 years; as for schooling, three had attended incomplete elementary school, two had completed elementary school and one high school. Regarding marital status, four were married or had a stable relationship and two were single and regarding religion, three reported being Catholic, two were evangelicals and one did not mention any religion.

On prenatal care, all reported regularity in the consultations, ranging from five to seven consultations attended. When asked about the period of diagnosis, three reported having found out the diagnosis at four months of gestation, two at eight months and one at seven months. Of the three pregnant women, two had already had another child before the diagnosis of HIV; and one of the three women who had already experienced the process of labor and childbirth, one had had two children before the diagnosis, while the others had received the diagnosis in the first gestation.

Difficulties after diagnosis

Regarding the experience after diagnosis, women reported difficulties, such as their own acceptance, lack of family and social support, prejudice, adherence to treatment and the impossibility of breastfeed.

This initial difficulty of acceptance of the positive serological condition can be felt, many times, because the woman has never perceived herself as vulnerable to infection and therefore has never imagined to be infected by HIV.

Many women revealed the lack of family and social support as a major difficulty after the diagnosis was revealed:

Revealing the diagnosis for the family and/or spouse and for society is one of the greatest difficulties for the patients, since this disclosure, besides representing a personal challenge of acceptance and coping, represents a social challenge of breaking prejudices and of inclusion¹².

Some participants reported difficulty in adhering to treatment due to adverse drug reactions:

Another difficulty was the impossibility to breastfeed:

Sadness and frustration were mentioned as feelings of these women, making it more difficult to understand and accept the impossibility of breastfeed^13,14. In addition, the impossibility of breastfeed is confronted with their desire to play the social role of mother, causing suffering in the face of being prevented from breastfeeding, which generates sorrow and feelings of incapacity and frustration¹⁵.

Hiding HIV seropositivity

In the speeches, concealment was identified in the face of the fear of reveling the diagnosis. It can be seen in the lines that, in addition to fear, there is concern about what others may think or do in the face of this revelation. Here are the testimonials:

This concealment was highlighted in a study of the meanings of immorality attributed to HIV/AIDS by society since the onset of the disease. The concealment by women is reinforced by the stereotypes built around AIDS, which even today is seen as an immoral disease. The social construction of the immorality of HIV/AIDS has meanings for its victims, and both individual and collective repercussions¹⁶.

Strategies for coping with seropositivity

Regarding the strategies used to deal with seropositivity and the forms of re-signification and confrontation of coping with diagnosis, some women have sought the isolation from the family or society and the concealment of diagnosis as a way to face the reality of their infection.

Mothers with HIV/AIDS stress that keeping the diagnosis confidential is a way to alleviate the suffering arising from the infection. The sufferings referred to by these women point to the family and social context in which they are inserted as a trigger for different conditions of vulnerability, impairing their quality of life, hampering and interfering with their freedom of expression, adherence to treatment and living in society³.

Another strategy mentioned by a pregnant woman was not thinking about the disease:

Thus, it is perceived that the woman resignifies her condition of illness to better face the reality of the infection. The act of thinking about the disease is identified as the main source of individual distress and is perceived as a form of surrender to the disease. Thus, because AIDS is still a disease associated with death, one way to survive with the diagnosis of being HIV-positive is to relegate it to the background, not allowing it to occupy a large space in their lives⁶.

It is in this context that the need for professional intervention arises, since not thinking and not talking about the disease does not mean the absence of suffering and anguish for these women. Thus, the nursing consultation becomes an important device to understand the subjectivity and singularity of each individual, besides being an opportune moment for the exchange of knowledge and tightening of bonds¹⁷.

As sources of strength and support to cope with the diagnosis, some women revealed the importance of the children, the presence of the partner and the family.

The family is considered as the main point of support for coping with the diagnosis¹⁸, being perceived by women as the group with stronger bond to reveal their condition of carrier of the virus. However, for some women who did not receive the support of the partner or the family, the support of the health professionals was extremely important.

It is important to emphasize the importance of the support of health professionals, which should go beyond guidelines for therapeutic adherence to medications, demonstrating empathy, understanding and humanization in care.

The nurse can use counseling as an important moment to build knowledge about the individual, since these women may be questions and reflections beyond their illness. In this way, counseling allows the nurse to understand the subjectivity and singularity of each patient, constituting a tool of emotional support.

Religion also emerged as support, being sought to overcome the difficulties of facing the diagnosis.

Knowing that AIDS is a disease for which there is still no treatment that leads to healing, it is common for people to hold on to religion. In this way, spirituality is a stimulus and comfort to bear the pain of being HIV positive, believing in the possibility of a better quality of life due to the treatment and in the hope of a miracle in which God can transform their lives completely¹⁹.

This highlights the healthy aspect of spirituality, when belief in healing produces hope in the person with HIV/AIDS and thus makes her want to witness this cure²⁰.

Thus, it was evidenced these women faced several difficulties after the disclosure of the diagnosis. Concealment of the diagnosis represented a way of dealing with the fear of its disclosure, and the isolation and denial of the disease were strategies to deal with the reality of seropositivity, as well as the support from the partner, family, religion and health professionals. Thus, being pregnant and living with HIV can imply experiencing suffering in different contexts²¹.

It is also important to address the feminization of AIDS by addressing aspects, such as gender relations and unequal attention within the Unified Health System, the lack of availability of female condom, the reproductive planning directed to the specific needs of HIV-positive women and the actions of health professionals²².

CONCLUSION

The results presented allowed assessing the complexity of HIV infection in women during the gestational period. The interviews elicited issues regarding the difficulties faced by women after disclosure of diagnosis, the concealment of this diagnosis in the face of the fear of personal and social acceptance and the strategies used to deal with the seropositivity.

Health professionals, especially nurses, are of utmost importance in the follow-up of this woman not only during the course of gestation, but during all the moments in which she feels fragile in the face of so many challenges arising from this result.

Among the limitations of this study there are the small number of participants and only one scenario, which impedes the generalization of the findings. Thus, other studies are necessary to understand the challenge of coping with HIV in women.

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