Pregnancy through the Lens of Iranian Women with HIV

Abstract

To explore the experience of pregnancy among Iranian women with HIV, 12 HIV-infected pregnant women who referred to counseling center for behavioral diseases in Imam Khomeini Hospital were recruited through purposive sampling. Data were collected by face-to-face, semi-structured interview and were analyzed using conventional content analysis method. Four main themes emerged from the data: fear and hope, stigma and discrimination, marital life stability, and trust in God. Despite concerns about mother-to-child transmission of HIV, and uncertain life span, HIV-infected women tended to continue their pregnancy, and having children was viewed as a window of hope for them.

Introduction

Although the first case of HIV infection was discovered in the last 3 decades, HIV/AIDS still remains a major global health problem. Recent estimates show that around 35 million people were living with HIV at the end of 2012. Across the world, women account for 50% of all HIV cases. ¹ According to the official statistics from Iranian Research Center for HIV/AIDS, 27 041 people are infected with HIV in Iran and 10.7% of them are women of reproductive age. ²

After achieving dramatic decline in the risk of vertical transmission of HIV using highly active antiretroviral therapy, many HIV-infected women express the desire to have children. ^3,4 It is reported that 34% of Iranian women who are living with HIV tend to have children. ⁵ Some factors influencing HIV-infected women’s pregnancy decisions are motherhood roles such as response to the needs of spouse to have a child and the needs to experience fulfillment and happiness. ⁶

Although, pregnancy is a challenging period for any woman, it is a more sensitive and challenging time for women living with HIV. ⁷ According to Sanders, ⁸ pregnancy for an HIV-infected woman is the experience of isolation, anxiety, and suspiciousness; but it is also hope for becoming mother. Pregnant women are worried about transmission of infection to the baby, and they are anxious about the effects of pregnancy on their health. HIV in pregnancy has been related to adverse outcomes such as spontaneous abortions, low birth weight, intrauterine growth restriction, stillbirths, preterm births, and perinatal and maternal mortality. ⁹ Therefore, most pregnant women who are living with HIV are so vulnerable. They require professional support including standard prenatal care, monitoring of medications and laboratory test results, and assessing potential for opportunistic disease. In addition, emotional well-being of pregnant women is important for facilitating attachment to the baby and developing the capacity to parent effectively. However, little is known about the emotional and psychological aspects of HIV-infected pregnant women and their everyday lives. ⁸

To provide a complete understanding and to enable the development of services that meet the reproductive needs of women living with HIV, a deeper understanding of cultural beliefs and practices of HIV-infected women is essential. ¹⁰ Moreover, as evidenced by previous studies, cultural differences can lead to different psychological responses to HIV. ¹¹ Therefore, given that Iranian women with many cultural beliefs and unique values may respond to their HIV status differently from women in other countries, this study was conducted to explore the experience of pregnancy in Iranian women living with HIV.

Method

Design

A qualitative design based on a content analysis approach was used to perform this study. Content analysis is a systematic coding and categorizing approach that can be used to unobtrusively explore a large amount of textual information in order to ascertain the trends and patterns of communication. ¹²

Participants

In this study, participants were selected by purposive sampling method, and maximum variation for age, duration of disease, mode of HIV acquisition, and number of births were considered. Women who met the following criteria were eligible to participate in the study: (a) being HIV positive, (b) currently pregnant, (c) over 18 years of age, and (d) fluent in Persian language. These participants were referred to the Counseling Center for Behavioral Diseases in Imam Khomeini Hospital in Tehran, Iran.

Data Collection

All data were collected from February to May 2014. After the eligible women were informed of the aim of the study, semi-structured, in-depth interviews were carried out with 12 HIV-infected women. The main question was “what is the meaning of pregnancy at the time of HIV infection?”

Interviews were conducted individually and face to face in a private room in the hospital, which lasted 45 to 90 minutes on average. Each participant was interviewed only once. All interviews were carried out in Persian language and then translated into English. Each interview was recorded and transcribed verbatim and then analyzed.

Data Analysis

Data analysis was performed using a content analysis approach. Content analysis is a research technique to make replicable and valid inferences from data, and it provides knowledge, new insights, a representation of facts, and informs practical action. ¹³ The following steps were taken to analyze the data; the recorded interviews were transcribed verbatim and then read several times to obtain a sense of the whole; the transcripts were divided into meaning units, which were then condensed, abstracted, coded, and labeled. Codes were sorted into subcategories and categories based on their similarities and differences. In this study, the first and second authors performed the data coding and all coauthors supervised it. In case of a disagreement over the coding, the research team discussed it in more depth to resolve any contradictions.

Trustworthiness

The trustworthiness of this study was assured using Lincoln and Guba’s criteria. ¹⁴ To meet these criteria, activities such as purposive sampling, member checking, peer checking, prolonged engagement with participants, and maintaining an audit trail by the corresponding author’s memos and reflective journals were conducted.

Ethical Considerations

The Ethics Committee of Tehran University of Medical Sciences approved the presented proposal and corroborated its ethical considerations (93D130312). All participants were informed about the purposes and the data gathering method of this study. Obtaining informed consent from all participants was a vital aspect of this study. They were informed that they had a right to refuse to participate in the interview and this right could be exercised at any time without having any negative impact on the health care services delivered to them. In addition, permission to record interviews was obtained from participants.

Results

The study participants’ age ranged from 22 to 39 years, with a mean age of 32.5 years. Five of them (41.6%) had completed primary school and 7 (58.4%) had finished high school. Length of time since HIV diagnosis was 1 to 5 years. A total of 7 participants had children and 5 of them reported being pregnant for the first time. The number of children was 1 to 3. Nine of the women (75%) had been infected with HIV by their husbands and 3 of them (25%) through unknown route.

During the data analysis, 4 main themes emerged including hope and fear, stigma and discrimination, marital life stability, and trust in God.

Hope and Fear

One of the extracted themes from the data was hope and fear. It consisted of 3 subthemes including “hope for experiencing motherhood,” “worrying about the safety of baby,” and “fear of premature death.” Despite the fact that many participants had knowledge about the risk of mother-to-child transmission of HIV and were concerned about the transmission, all of the mothers wished to continue their pregnancy, because they hoped to have a healthy baby and experience being a mother. For these women, the experience of motherhood was symbolized as the completion of being a woman and a chance to enhance their life. However, they were frightened of their premature death and leaving their children alone growing up without mother.

Hope for Experiencing Motherhood

Most HIV-infected pregnant women hoped to have a healthy baby and become a mother to start a new life. The infant was considered as a source of hope for HIV-infected mothers and was often their reason to live. Most women believed that pregnancy and motherhood gave them a feeling of esteem and value. In this regard, 1 participant stated:

Pregnancy is a double joy for me and being a mother is a fulfilling experience. When you are a mother, it gives you a sense of generosity, esteem, and greatness and at that time you understand the value of motherhood. These are not just words. When a healthy baby is moving, you think that God has bestowed the whole world on you. I have a good feeling, and my view about the world has been changed. This pregnancy is a hope in my life. When I think that I can experience the sense of motherhood once again and I take my baby in my arms, it gives me a great feeling.

Another participant said:

I’d like to be a good mother and take care of my baby. The experience of motherhood is extremely sweet. It makes me valuable. When you notice that a baby is growing up, it is very appealing. In spite of suffering the illness, a healthy baby revives the light of hope inside individuals. If I did not have this baby, I would be depressed. This baby gives me great hope and by having my baby, I feel more hopeful than before.

Worrying about the Safety of Baby

All participants were concerned about the transmission of infection to the baby and having an HIV-infected child. One of the participants stated, “I’m deeply concerned that I will bear a child which suffers an illness until the end of his life and should take drugs and his life span will be short.” Another participant added, “My concern will only end when my child is born and I learn that his 2-year examination shows he will be healthy. Until that time, I’m always worried about my child’s health.”

Most participants emphasized taking their drugs to protect their children against HIV transmission. In this regard, 1 participant said, “Now, I take the drugs for the safety of my baby. I want my baby to be healthy that is why I’m trying to take my drugs on time. My baby’s health is so important for me.”

Fear of Premature Death

Most participants described a deep sense of fear of prematurely dying and leaving their children to be raised by their husbands, family members, or a guardian. They were frightened of the potential of not “being there” to raise their infants and see their child grow up. In this regard, 1 participant who had acquired HIV infection from her former partner and her current husband was HIV-negative stated, “I don’t know how long I will live. I fear that I’ll die prematurely and my child will grow up without a mother.”

Some participants feared the negative effects of pregnancy on their health. They feared that pregnancy may worsen their disease and lead to premature death. One of the participants stated, “I am scared that pregnancy is harmful for me because my CD4 [count] will come down and my disease will become worse and my life span will become shorter. Pregnancy may lead to my death.”

For some participants, fear of premature death was heightened by their relatives, when they found that these HIV-infected women became pregnant. In this regard, one of the participants said, “when my elderly sister-in-law learned that I am pregnant, she was distressed. She told me: ‘When you know that you will die soon, why have you become pregnant?’ She reminds me that I will die soon.”

Stigma and Discrimination

Pregnancy has been commonly associated with stigma and discrimination for HIV-infected women. Most participants of this study experienced stigma, discrimination, and isolation during pregnancy. Some participants had at least 1 negative experience with a health care provider. When they referred for prenatal care and delivery, their HIV status was disclosed and they were isolated. One of the participants stated, “One day I was going to the bathroom in a hospital ward, a nurse stopped me and didn’t allow me to go to the bathroom. I was so ashamed and couldn’t go to the bathroom. If I didn’t have HIV, they wouldn’t treat me like this.”

Some participants were blamed by health care providers for becoming pregnant. In this regard, 1 participant said, “When I went to the hospital for prenatal care, the hospital staff blamed me for becoming pregnant. They said: ‘Why did you become pregnant? Don’t you know that you are HIV positive?’”

Most participants were worried about their HIV status being disclosed and fear being stigmatized by their family members. One of the participants said, “When the time of my delivery arrives, I’m not going to inform my family because I don’t want my family to know about my illness. Nurses and midwives may disclose this issue and my family members will learn about my illness and reject me.”

In addition, most women were worried about the negative impact of HIV-related stigma on their children. One of the participants stated, “When my first child was positive, my relatives didn’t kiss him and didn’t let their children play with him. They all reject him and he is very alone. Therefore, I’m so worried that my baby will be positive and everyone will reject him, too.”

Moreover, most participants were worried about being blamed by their infected children in the future. One participant said, “If my child is born with HIV, I will never forgive myself. When my infant grows up, he will probably ask me, ‘Why did you become pregnant when you knew that you suffer from this disease?’ My conscience will be tortured at that time.”

Marital Life Stability

Although most participants of this study believed that their marital life was unstable before pregnancy and HIV had weakened the foundation of their family, they mentioned marital life stability during pregnancy. One participant stated, “Before pregnancy, when we understood that we are sick, our marital life became cold. I blamed him and he did the same, too. We were both trying to blame each other. The issue of divorce was raised. After I became pregnant, we became hopeful and our life is better now.”

Most participants believed that they were more interested in their lives, and more dependent on their husbands, after becoming pregnant. They also believed that having a child could help to stabilize the family. One of the participants said, “Before I got pregnant, I didn’t care about my husband too much, when he was talking to me, I didn’t listen to him. Since I became pregnant, I feel more attached to him. He also has the same feeling. We sometimes talk together about the baby’s name.… Having children makes the family stable.”

Another participant added, “My relationship has improved and become sincere with my husband because we understand that we can only rely on each other. Since I became pregnant, my husband always comforts me … I think that having a child can sustain our life.”

Trust in God

Trust in God was one of the main themes that emerged from the HIV-infected women’s experiences. Despite all concerns about the mortality and the transmission of HIV to the baby, the participants struggled with their own concerns with trust in God. They believed that their life and death, and their baby’s health, depend on God’s will and they have to trust God. One participant said, “Life and death is God’s will. I believe that whether my baby is healthy or sick depends on God’s will. I believe in God and trust Him.”

Most participants believed that trust in God can help them to manage anxiety and depression. In this regard, one of the participants said, “I pray to God that my child will be healthy.… When I pray to God, I become calm and relaxed. It helps me to be less depressed.” Another participant added, “This disease has made me anxious that is why I always read Quran and appeal to God that my baby will be healthy. I console myself with trusting God. I know that God loves me and I trust Him.”

Discussion

The present study aimed to explore the experience of pregnancy among HIV-infected women. Few studies have focused on pregnancy within the context of a chronic illness such as HIV/AIDS. The results of this study illustrate that the experience of pregnancy in Iranian HIV-infected women is characterized as hope and fear, stigma and discrimination, marital life stability, and trust in God. Our findings indicated that pregnancy in the context of HIV is experienced as an experience of contradiction. Whereas HIV-infected pregnant women experienced concerns about transmitting the virus to baby, effects of pregnancy on their health, and stigma and negative relationships with health care providers, all participants in our study decided to continue their pregnancies because they hoped to have a healthy child and experience motherhood.

According to our results, becoming pregnant and experiencing motherhood for the HIV-infected women was a source of hope, value, and esteem. All participants of this study wanted to be a mother and need to experience motherhood and being a loving mother in spite of being HIV infected. Most of them were attempting to achieve a positive maternal role. In fact, having children is a fundamental drive for many Iranian couples, which is reinforced by both religious and cultural norms and values. In general, Iranian culture views children as “divine gifts.” ¹⁵ HIV-infected people are no exception. Partially consistent with our study, a meta-synthesis conducted by Sandelowski and Barroso ¹⁶ showed that 2 primary goals of mothers with HIV are the protection of children from HIV infection and the preservation of a positive maternal role. According to Kirshenbaum et al., the experience of motherhood among HIV-infected women is a chance to correct past mistakes. ¹⁷ In contrast, Sanders ⁸ reported that most pregnant women living with HIV did not experience motherhood positively and could not preserve the positive maternal identity due to substance abuse and custody issues. Ineffective parenting does not appear to be a direct consequence of HIV, but it is a consequence of drug abuse. ¹⁸

Our data showed that almost all participants in this study reported experiencing stigma and discrimination during pregnancy. They were stigmatized by both family members and health care providers. Previous studies also revealed that the experience of pregnancy and motherhood after HIV diagnosis is associated with periods of emotional distress and stigma. ^3,8 The participants in the present study protected themselves from stigma through hiding their HIV status within familial relationships and/or social systems for fear of being stigmatized. This finding is supported by other current literature. ¹⁹ In contrast, Bunting and Seaton ²⁰ reported that when American women revealed their struggle with the HIV diagnosis to their family, they received great tangible and emotional help from family members.

According to our results, for HIV-infected women becoming pregnant is a way to achieve a stable marital life. The women in our study recounted an overall positive experience of their husband’s care and marital life stability during pregnancy as their husbands showed sensitivity to their unique needs. They received more support from their husbands and were more interested in their marital lives when they become pregnant. In addition, Abbasi-Shavazi et al. ¹⁵ state becoming pregnant and having children save marital relationships among Iranian couples. In fact, having children is mainly considered as strengthening the institution of the family and as a symbol of commitment to Iranian cultural values. ²¹ In contrast, the participants in Sanders’s study were alone and did not have the positive experience of their husband’s support. ⁸

In the present study, reading the Quran and saying prayers is viewed as a spiritual tool for helping the women to cope with stresses associated with potentially transmitting HIV to their infant. Similarly, in the study by Polzer Casarez and Shandor Miles ²² participants believed that God controlled all aspects of their lives and provided strength to manage their lives. They also believed that they had to be active participants in their relationship with God through prayer, reading the Bible, and other spiritual practices. By participating in these spiritual practices, they believed that God would respond to their needs. Moreover, they managed their concerns about their infants through their communication with God, believing that God would take care of their children. These findings supported our results.

Limitations

Although the results of this qualitative study can add to the knowledge regarding the experience of pregnant women living with HIV, the results are not generalized to all HIV-infected pregnant women. One of the main limitations of this study is that we just used the experience of patients who referred to the counseling center for behavioral diseases in Imam Khomeini Hospital. However, we tried to consider maximum variation in sampling.

Conclusion

The experience of pregnancy in HIV-infected women is associated with hope and fear, stigma and discrimination, stability and security of marriage, and trust in God. Despite concerns about the transmission of HIV to the baby, and uncertain life span, HIV-infected women intend to continue pregnancy to experience motherhood and they view the child as a window of hope. For HIV-infected women, pregnancy reinforces their marital stability and makes them get closer to God for managing their anxiety and depression.

Our findings have implications for health care providers to be aware of experiences of HIV-infected pregnant women to provide targeted support and comprehensive care for them to pass a safe pregnancy. In addition, it is important that health care professionals learn about the specific needs emerging from the experience of HIV-infected pregnant women to help them move toward a positive mothering role.