The total number of participants comprised 26 HIV-infected pregnant women, of whom 14 were pregnant, and 12 were in the postpartum phases. Participants aged 22 to 43 years received lifelong ART. The majority of the participants (n = 16) were married, and all of the participants were employed. All of the participants were observed to be Christians in terms of religion. (See Table 2)
Themes
Following the thematic analysis of the interviews, four significant themes emerged as major issues experienced by WLWH during pregnancy and postpartum. The main themes included were Unexpected Diagnosis; Disclosure Issues; Emotional Distress; and Isolation. Also, three themes emerged as ways the women cope with adversity in the face of challenges. The main themes included Acceptance of Self and HIV Diagnosis; Social Support from Partners, Family, and Friends, and Support from the Healthcare Delivery System. (See Table 3)
Table 3. Main themes and sub-themes for challenges and coping strategies
Challenges
Theme 1.1. Unexpected Diagnosis
Most participants were shocked when they learned about their positive HIV diagnosis. Before the HIV diagnosis, the women did not believe that they could contract the HIV infection.
Theme 1.1.1. Fear because of Preconceptions of HIV
Some of the participants had misconceptions about the disease, and they perceived HIV as a disease that was synonymous with death which informed their feelings of fear, sadness, and grief upon diagnosis. A response supporting this was given by Participant 9, who said:
“I had heard the disease kills people and other things like that. That's why I was crying. That's why I was thinking so much that time.” P9
Learning that they had HIV was comparable to receiving a terminal illness diagnosis, generating uncertainty and hopelessness. Participant 12 shared that a leading factor in the generation of these feelings is the way being diagnosed with HIV is described by others:
“They normally use one harsh term in Yoruba, which demoralizes people with HIV. They say “won tilugbakokoroti o gbogun” (They have been struck with a disease that has no cure).” P12
Theme 1.1.2. Shock, Disbelief, and Denial of Diagnosis
The participants reported experiencing intense feelings of shock and sadness following the revelation that they had been diagnosed with the disease. This testament is similar to Participants 1 and 12 revelations.
“I don’t think that there’s a single person who would receive that kind of news so suddenly that wouldn’t feel as shocked as I was at that moment. It hit me so suddenly.” P1.
“I was devastated. I had almost gone mad. Almost, it was just a tiny line for me, if not for God’s grace. I thank God” P12.
With further exploration of the cause of this shock, a common finding was that the positive HIV test result was unexpected. The reasons range from having a previous negative result, having only one partner, and believing that positive results were associated with practicing unsafe sexual behaviors.
“When we got married, we did all the tests. And there was nothing like HIV. So, I didn’t understand how I came about it.” P11
“I did not have it in mind at all because I'm not a promiscuous person. I didn't think I had done anything I wasn't supposed to do somewhere, and I would have gotten it from there. I didn't have it in mind at all that I could have the disease until they told me that I did.” P7
Theme 1.1.3. Anger towards the partner.
While the participants were upset with themselves for contracting the illness, some blamed it on their spouses. Participant 20 reported being aware of her infection and was angry and blamed her husband.
“I was very angry with him because I knew it was from him. He doesn’t know how to stay in one place. I even tried to fight and shout at him; it was like he was trying to kill me. I got even angrier when I thought our children could have it too.” P20
Participant 23 also expressed pain and unhappiness at being negatively affected by the sexual behavior of her partner.
“He does not know how to protect himself and does not like using condoms. Unfortunately, I had to be on the receiving end of that. It was very painful to think back on it.” P23
Theme 1.2. Disclosure of HIV Diagnosis
For some participants, their diagnosis was perceived as a personal burden they wished to deal with on their own. This perception was illustrated by Participant 12, who highlighted that it was essential to keep the HIV diagnosis a secret.
“I haven't told anyone because it is our personal family issue. Nobody else needs to know about it.” P12
For the participants of this study, disclosure was selective. They only disclosed their HIV diagnosis and that of their child to persons they could rely on to keep the information a secret. Additionally, they disclosed to those they thought would support them.
“I was ashamed to tell her at first. But my mother and I were close, and I needed someone to talk to. And normally, there was nothing I couldn’t talk to her about. She was the only one I could turn to.” P22.
Theme 1.2.1. Fear of Disclosure.
Nearly all the participants expressed fear of disclosure, anxiety about HIV-related stigma, and rejection as critical concerns. Some women worried that disclosing their positive HIV status to their partners would lead to assumptions that they had been unfaithful to the partnership, and they feared the emotional and physical violence and isolation that may have followed. These fears were illustrated by Participant 4 in her report about disclosing her status to her partner:
“No, I did not tell him. I didn’t want more problems. If he knows about it, he can throw us out. Where would I go? And I cannot raise a child myself.” P4.
In addition to this, she also believed that others would not keep the information confidential and they would be rejected or treated differently:
“Before I tested positive, I had heard things people said about those with the disease. They say it's incurable, and people that get it are dirty. I didn’t want anyone to look at me or my child like that. We would both be isolated. Nobody would want to come near us” P4.
Theme 1.2.2. The outcome of disclosure.
Some participants revealed that they experienced rejection and embarrassment resulting from disclosure to their families and sexual partners. Participant 13 narrated that she was humiliated, isolated, and ultimately rendered homeless by her partner and his family when she disclosed her positive diagnosis.
“He told everybody in his family that I had HIV. I felt so ashamed, and He told them I was sleeping around and wanted to give him a child that didn't belong to him. I don't stay with him anymore. They said I should leave.” P13.
In contrast, some participants reported receiving support from those close to them after disclosure, which was evident from Participant 16, who said:
“There’s so much stigmatization and false information regarding HIV, but they are very supportive. Even my daughter checks with me to make sure I’m fine.” P16.
Participant 6 reported that her partner was not supportive upon initial disclosure but became more accommodating and supportive after the counseling intervention from the health facility workers she was attending.
“He reacted the way you would expect anybody to react when you hear that; what kind of thing is this? But I’ll never forget that he focused more on my and our child's health. His love for me made him take things more calmly.” P6.
Theme 1.3. Emotional Distress
Participants described the impact of being diagnosed with HIV as psychological and emotional. The majority of the participants reported that being pregnant added to their anxiety. They worried their unborn child might contract HIV, which caused them pain.
Theme 1.3.1. Fear for the life of their child.
Participants, upon the discovery of their HIV diagnosis during their pregnancy, were concerned about the prospect that their unborn child would contract HIV and feared that their babies would die soon after birth due to HIV.
“I was about to have a baby, and I wanted to have more children after that. I didn’t understand it because I thought they were trying to tell me that I could not have children or my baby would die.” P3.
One of the participants who were aware of her diagnosis before her pregnancy shared the same fears before she got pregnant and as well as after:
“I thought about it a lot that time. Before and after I got pregnant, I was thinking, would I be able to have a child? And when I got pregnant, I was thinking, will this child live or die?” P10.
Theme 1.3.2. Guilt, Shame, and Self-blame.
Many participants expressed sentiments of shame and guilt. They reported being ashamed of their diagnosis and viewed themselves as pariahs.
“I don't know what anybody else thinks, I can't speak for them, but for me, it's bad.” P19.
They also felt responsible for subjecting their child to the possibility of living with HIV and thus blamed themselves:
“I realized that these tattoos I drew on my body were the most likely cause. And I was thinking that if I didn't do that to myself, I wouldn't be here and sick like this because I couldn't let anyone follow me so they wouldn't find out. I still look at them regretfully because now I'm suffering for it, and my child might have to suffer too.” P10.
Theme 1.4. Isolation.
In this study, stigma and the fear of stigma were pervasive in these women’s lives and had a significant impact. Some of the participants experienced stigma from healthcare providers as well as family members upon disclosure. Being diagnosed with HIV also made these women wilfully withdraw and isolate themselves, resulting from the fear of rejection and of the prejudice of the people around them.
Theme 1.4.1. Stigmatization.
When seeking antenatal care services at the hospital, some of the study's participants were subjected to stigma and discrimination and reported receiving less favorable treatment from medical professionals than HIV-negative women.
“Even though I work in a hospital environment, when people see you have it, they…, actually on your case note they would write it there on your case note. They would use that sign, the red positive; they would put it there to mark that thing. Everyone in that field would know that the person is HIV positive and treat you somehow.” P12.
Stigma was also reported from several sources, including family members.
“My sister thought I was going to die. That was the first thing she shouted about. It wasn't until I tried to calm her down and explain to her. But even then, she has shifted away from me; she's not as free with me as she used to be. I noticed that she doesn't let her children come near me.” P9.
Theme 1.4.2. Self-isolation.
For most participants, their diagnosis contributed to feelings of low self-worth, and they felt the need to isolate themselves from their immediate environment. This self-isolation may also be perceived as means of coping with the fear of stigmatization.
“I was withdrawn, I didn’t go to parties, I didn’t mingle, I discontinued associating with all my friends.” P19.
“I don't talk to people, even those who attend this clinic with me. I don't have friends here.” P7.
Coping Strategies
Themes 2.1. Acceptance of Self and HIV Diagnosis.
Participants in this study experienced internal stigma connected to HIV, which caused them to withdraw from their community. Participant 12 explains stated that,
“I was withdrawn, I didn’t go to parties, I didn’t mingle, I discontinued associating with all my friends. It affected me even up till today because a majority of the friends I had then, I have lost their contacts; I don’t have any information about them.” P12.
However, viewing HIV as a disease affecting many people rather than a death sentence and accepting her HIV status was a decisive step towards self-acceptance. She later says:
“If someone having diabetes can be living on drugs, someone that is hypertensive can be living on drugs, someone with hepatitis can be living on drugs, then what is the big deal about living with HIV that you cannot just continue living in your drugs and you will be doing very fine. And life goes on.” P12.
Themes 2.2. Social Support from Partners, Family, and Friends.
Some participants indicated that having their partners' and other family members' support influenced their pregnancy experience and postpartum results beneficially. The participants described how their partner and family members were committed to helping them adhere to ART and PMTCT protocols:
“He is resigned about it now. He has accepted it. Initially, it wasn’t easy, but we thank God. Now there is no problem at all. He even reminds me to take my medication.” P3.
“She has helped me so much with my child. He’s even with her now in Ondo. I didn’t want my husband to question why my child was taking medication, so I was with my mother from giving birth until I stopped breastfeeding.” P4.
Themes 2.3. Support from Healthcare Delivery System
Some women could overcome their concerns about perinatal transmission, seek HIV care, and give birth to an HIV-uninfected child with the assistance of reliable healthcare professionals regarding PMTCT practices.
“They told me my baby could be healthy without the disease. That was all I wanted. They told me that I could have a healthy baby that wouldn’t even have HIV, and that was a relief for me.” P1.
Themes 2.3.1. The role of counseling.
The participants emphasized the importance of regular counseling. In their opinion, counseling was essential to understand their situation. They also admitted that the counseling they got had given them hope for a future.
“That was where they counseled me. They told me there was no problem, that I should calm down and nothing would happen. It helped me a lot. They explained that having this disease doesn’t mean I will die. They told me I could live a healthy life if I took my medication” P2.
Some participants also talked about how helpful interacting with other WLWHs within the healthcare facility was.
“And I had also met some people with the disease that had a baby, and nothing was wrong with the baby, so I didn't feel anyhow. I wasn't afraid.” P8.
Themes 2.3.2. Confidence in the use of ART and Adherence.
The participants' faith in ART served as a coping mechanism after receiving their HIV diagnoses. The women believed that they and their children could have everyday lives because of the availability of effective antiretroviral medications.
“I’m taking my drugs religiously, and my viral load is so low, I cannot infect you. I would tell you there’s no big deal, I can have a child, you have a child, and I have a child, your child is normal, and my child is normal, you can breastfeed, and I can breastfeed.” P12.
“But they told us everything won't affect the baby if we keep using the medication. And I made sure I took my medication regularly.” P11.