id 12114

ORIGINAL RESEARCH

 

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

 

Petra Kelly Rabelo de Sousa FernandesI; Karla Corrêa Lima MirandaII; Dafne Paiva RodriguesIII; Léa Dias Pimentel Gomes VasconcelosIV

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 women4,5.

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 recommended7,8.

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.

It was very difficult [...]. We sometimes think that this [HIV contamination] will never happen to us and it ends up happening (I2).

I did not want to accept [the diagnosis] at all (I4).

I would never imagine that I had HIV. I have never thought I'd discover something like this. (I6).

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:

I had no help from anyone. My family, they have prejudice (I1).

The others did not want to be next to me, neither. My friends I used to have, I do not have anymore today (I3).

Because my family, I cannot count on them (I6 ).

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:

I feel very nausea, because they are very strong [the medicines].Dizziness, headache, abdominal pain (I5).

The medicines are very strong. [...] It's too bad to have to take them every day, every day, every day. Headache, abdominal pain, diarrhea (I6).

Another difficulty was the impossibility to breastfeed:

But what I think the most difficult part will be when I will have to breastfeed; I will not be able to breastfeed. Because the best milk is the mother's milk. And for my son it will not be my milk. It's too bad because every woman who gets pregnant wants to breastfeed (I5 ).

Sadness and frustration were mentioned as feelings of these women, making it more difficult to understand and accept the impossibility of breastfeed13,14. 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:

I do not dare talking openly to anyone. There in my neighborhood, where I live, nobody knows. I'm scared to death that people find out. What are they going to think about me? (I1).

I think if the others [of the family] find out, they will ignore me (I2).

The bad thing is you cannot tell anyone. You have to keep that to yourself, because you there is much discrimination about it (I5).

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.

I have moved out from my neighborhood because of this [HIV infection] (I1).

The more isolated [from the family], the best it is (I5).

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:

The way I think it is the best is to think that I do not have [HIV]. Because if I think I have it, I think I might fall. For me, it's like I have nothing (I2).

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.

But God had mercy on me and gave me the baby so I could be stronger. Strength is only in the baby (I4).

Only the help from my partner, who is giving me much strength, and from my daughter (I6).

Good thing was the union of my family, the support of my mother (I2).

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.

I had much support here [in the hospital]. The support I did not have at home, I received from others outside (I3).

I looked for help here with hospital staff (I6).

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.

So, there is my religion, too. The pastor gave me much support, talked to me the moment I needed it. (I3)

Only the help from God . (I6)

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.

 

REFERENCES

1. Ministry of Health (Br). Department of STD, AIDS and Viral Hepatitis. Epidemiological Bulletin HIV/AIDS 2013. Brasília (DF): Ministry of Health; 2013.

2.Oliveira DC, Vidal CRPM, Silveira LC, Silva LMS. The work process and the clinic in nursing: thinking about new possibilities. Rev. enferm. UERJ. 2009; 17 (4): 521-6.

3.Preussler GMI, Eidt OR. Experiencing the adversities of the binomial gestation and HIV/AIDS. Rev. gaúch. enferm. 2007; 28 (1): 117-25.

4.Araújo MAL, Silveira CB, Silveira CB, Melo SP. Experiences of pregnant and puerperal women diagnosed with HIV. Rev. bras. enferm. (Online). 2008; 61 (5): 589-94.

5.Carvalho FT, Piccinini CA. Maternity with HIV infection: a study on the feelings of pregnant women. Interaction in Psychology. 2006; 10 (2): 345-55.

6.Neves LAS, Gir E. Mothers with HIV/AIDS: perceptions about the severity of the infection. Rev.Esc. Enferm. USP. 2007; 41 (4): 613-8.

7.Araújo MAL, Queiroz FPA, Melo SP, Silveira CB, Silva RM. HIV-positive pregnant women: coping and perception of a new reality. Ciênc. cuid. saúde. 2008; 7 (2): 216-23.

8.Costa MS, Silva GA. HIV-positive pregnant woman: the feeling of the disclosure of seropositivity during prenatal care. REME rev. min. enferm. 2005; 9 (3): 230-6.

9.Minayo MCS. The challenge of knowledge: qualitative research in health. São Paulo: Hucitec; 2010.

10.Bardin L. Content analysis. Lisboa (Pt): Edições 70; 2011.

11. Ministry of Health (Br). National Health Council. Regulatory guidelines and norms of research involving human beings. Resolution no. 466 of December 12, 2012. Brasília (DF): Ministry of Health; 2012.

12.Sousa PKR, Torres DVM, Miranda KCL, Franco AC. Vulnerabilities present in the pathway experienced by patients with HIV/AIDS in therapeutic failure. Rev. bras. enferm. (Online). 2013; 66 (2): 202-7.

13.Miranda BA, Silva K, Lima EC. HIV and maternity: feelings of women who cannot breastfeed. Integrated nursing journal. 2009; 2 (2): 247-63.

14.Padoin SMM, Souza IEO. The understanding of fear as a way of disposition of women with HIV/AIDS in face of the (im) possibility of breastfeeding. Texto & contexto enferm. 2008; 17 (3): 510-8.

15.Paiva SS, Galvão MTG. Feelings about the impossibility of breastfeeding of pregnant and puerperal women with HIV. Texto & contexto enferm. 2004; 13 (3): 414-9.

16.Cechim PL, Selli L. Women with HIV/AIDS: fragments of their hidden face. Rev. bras. enferm. (Online). 2007; 60 (2): 145-9.

17.Sousa PKR, Miranda KCL, Franco AC. Vulnerability: concept analysis in clinical practice of nurses in an HIV/AIDS outpatient clinic. Rev. bras. enferm. (Online). 2011; 64 (2): 381-4.

18.Medeiros APDS, Araújo VS, Moraes MN, Almeida AS, Almeida JN, Dias MD. The experience of seropositivity for pregnant women with HIV/AIDS: prejudice, pain, trauma and suffering from the disclosure. Rev. enferm. UERJ. 2015; 23 (3): 362-7.

19.Arcoverde MAM, Conter RS, Silva RMM, Santos MF. Feelings and expectations of pregnant women living with HIV: a phenomenological study. REME rev. min. enferm. 2015; 19 (3): 554-60.

20.Santo CCE, Gomes AMT, Oliveira DC, Marques SC. Adherence to antiretroviral treatment and spirituality of people with HIV/AIDS: study of social representations. Rev. enferm. UERJ. 2013; 21 (4): 458-63.

21.Camillo SO, Silva LO, Cortes JM, Maiorino FT. The desire to be a mother with HIV/AIDS infection. Rev. enferm. Cent.-Oeste. Min. 2015; 5 (1): 1439-56.

22.Assis MR, Silva LR, Lima DS, Rocha CR, Paiva MS. Knowledge and sexual practice of HIV-positive pregnant women attended at a university hospital. Rev. enferm. UERJ. 2016; 24 (6): 1-6.