Approximately 1.2 million people are currently living with HIV in the United States. More than 280,000 are women, and 80% of them are in their childbearing years (Centers for Disease Control and Prevention, 2015a; 2015c). Annually, about 8,700 women living with HIV (WLWH) deliver infants in the United States (Centers for Disease Control and Prevention, 2015b). Antiretroviral therapy (ART) is effective in preventing perinatal HIV transmission (Connor et al., 1994; Perinatal HIV Guidelines Working Group, 2014). Perinatal transmission of HIV can be significantly decreased from 40% without ART to less than 1% with ART provided to women during pregnancy and to their exposed infants after delivery (Centers for Disease Control and Prevention, 2015b; 2015c). Despite the U.S. public health goal of no perinatal transmission of HIV, maternal transmission occurs in about 200 infants annually (Centers for Disease Control and Prevention, 2015a; 2015b). Although this population is relatively small, the effect of a preventable transmission to an infant is costly to the infant, family, and health care system; preventing a single perinatal transmission of HIV saves an estimated $660,930 throughout the lifetime of the infant (McCabe, Goldie, & Fisman, 2010).
Although strict ART adherence leads to dramatic clinical benefits, nonadherence to ART is a persistent problem. Adherence rates to ART during pregnancy are suboptimal, ranging from 61% to 75% (Mellins et al., 2008; Nachega et al., 2012). Factors associated with nonadherence to ART were varied in research focused on nonpregnant women. Nonadherence to ART in women who are not pregnant has been associated with heavy alcohol use (Barai et al., 2017) and lack of resources for basic necessities, such as transportation, food, and housing (Cornelius et al., 2016). Of the few studies examining nonadherence in pregnant women, investigators used quantitative approaches and measured physical health (HIV health symptoms), emotional health (depression, feelings of being overwhelmed), and substance use, including illicit drugs, alcohol, and cigarettes (Anderson, 2012; Bardeguez et al., 2008; Mellins et al., 2008; Nachega et al., 2012; Stevens & Hildebrandt, 2009; Wilson, Ickovics, Fernandez, Koenig, & Walter, 2001). Although these studies showed that an increase in physical and emotional health problems and substance use was related to nonadherence, the findings do not increase our understanding about adherence in these women and how it affected their daily lives. To our knowledge, there is no evidence that describes the contextual factors affecting pregnant WLWH and their experiences with adherence to ART in the United States. It is known that the earlier the viral suppression is obtained during pregnancy, the less likely it is that transmission to the infant will occur. Initiating ART during the first trimester should be considered a health imperative (Bardeguez et al., 2008).
Research has implemented interventions targeted to increase treatment adherence, including the utilization of peer support groups, modified directly observed therapy, depression treatment, multiprofessional teams, and one-on-one approaches that focus on daily scheduling of dosing (Simoni, Pearson, Pantalone, Marks, & Crepaz, 2006). When these interventions were implemented with pregnant women, adherence rates were 75% at best (Bardeguez et al., 2008). The dearth of evidence about ART adherence during pregnancy highlights the need to examine this vulnerable population.
The purpose of our study was to explore the experience of taking ART for pregnant WLWH as they describe it. Health care professionals' understanding of this experience can help design interventions aimed at increasing ART adherence during pregnancy for this vulnerable population. The primary research question guiding our study was What is it like for pregnant WLWH to adhere to ART?
We used interpretive phenomenology employing a method developed by Benner (1994) to better understand the experiences of women prescribed ART. The interpretive phenomenology process allows the researcher to identify themes and leads to understanding commonalities and differences among participants through considering all aspects of the lived experience (Benner, 1994; Benner & Wrubel, 1989). The inclusion of women's narratives of their experiences are valuable and necessary to provide effective and ethical care; a phenomenological approach allowed the research team to better understand the collective experience of pregnant women taking ART as described by these women in their own words.
Setting and Sample
We recruited 10 participants from a large urban Midwest academic medical center outpatient clinic in the United States that provides integrated HIV and obstetric care to pregnant WLWH. We used a cross-sectional, convenience sampling technique to recruit these women (Benner, 1994). Study inclusion criteria were as follows: (a) at least 18 years of age, (b) pregnancy greater than 13 weeks, (c) ability to give informed consent, (d) currently receiving infectious disease and obstetrics care, (e) able to speak and read English, and (f) prescribed ART for HIV infection. Exclusion criteria were as follows: (a) pregnant women not planning on being a primary caretaker of infant once born, (b) history or current symptoms of serious psychiatric symptoms, and (c) diagnosis of genetic or acquired birth defects of fetus. Institutional Review Board approval was obtained from the Northwestern University, University of Illinois at Chicago, and Loyola University Chicago; all women provided written informed consent.
Participants were interviewed in a private office at the recruitment clinic. The interview guide was developed after careful reflection on the first author's assumptions and in consultation with clinical experts in obstetrics and infectious disease care (S.C.V. and two other faculty members at the parent institution) and qualitative researchers with experience in phenomenological methodology (O.P. and another faculty member at parent institution). Minor revisions were made following consultation with these experts. The guide was developed to provide ample opportunities for participants to openly express their lived experiences of taking ART during pregnancy (Table 1). The first author conducted all interviews. During these meetings, she projected a nonjudgmental attitude in verbal and nonverbal communication. Open listening to participant responses and then checking for understanding during the interview assisted with data collection and analysis (Benner, 1994). Brief notes were taken during the interview to prompt additional probes for clarification. Interviews were audio taped and ranged from 25 to 47 minutes in length. The women received a $25 gift card for their participation. Following the interview and to enrich the data, the first author recorded detailed field notes describing immediate thoughts to provide insight into the participant's world and to capture relevant nonverbal communication.
Interpretive phenomenology uses the hermeneutic circle, a process in which the researcher goes back and forth between participant narratives of the lived experience (transcriptions of interviews) and his or her own assumptions, and the interpretations of the lived experience (preunderstanding, field notes, and memos; Benner, 1994). Throughout data collection, the first author listened to each interview several times to remain close to the data and to determine data saturation (Benner & Wrubel, 1989). In addition, all authors met regularly to discuss the need for any new probes for the interview guide and reached consensus about saturation.
All interviews were documented using consistent guidelines to capture both verbal communication from the audio recording and nonverbal information from the field notes. We uploaded all verbatim transcripts and field notes into Dedoose 4.5 (www.dedoose.com, 2013), a Web-based qualitative software platform, used to manage and organize the data. We began coding each transcript line by line and developed 24 initial codes across all 10 transcripts. These codes were validated in consultation with second and third authors. Codes were then grouped into major themes (Benner, 1994).
Rigor was enhanced through credibility, dependability confirmability, and transferability (Lincoln & Guba, 1985). Credibility was supported by having regular team debriefings to discuss patterns and themes during analysis and discussing them for validation with clinical providers specializing in ART with pregnant women (Benner, 1994; Lincoln & Guba, 1985). Dependability was fostered by having two research team members (O.P. and S.C.V.) review the transcripts and agree to themes and maintaining an audit trail of study procedures (Lincoln & Guba, 1985). Confirmability was enhanced by the first author reflecting critically on her own assumptions during the research process and staying close to the data through reflexive journaling. Transferability was strengthened using thorough description of sample, setting, and thick descriptions (e.g., quotes) of the lived experiences depicted by the women (Lincoln & Guba, 1985).
Characteristics of the Sample
Ten pregnant ethnic minority WLWH participated in interviews that examined their lived experiences of taking ART. Participant characteristics are shown in Table 2. Eight women described themselves as African American, and two self-identified as Hispanic. Six of the 10 women had had at least one other pregnancy since being diagnosed. Two women were pregnant for the first time since being diagnosed with HIV, and two women were diagnosed with HIV during the current pregnancy. Gravidity ranged from one to six (mean = 3.6), and parity ranged from zero to five children (mean = 2.5).
Antiretroviral Therapy Adherence as a Balancing Act
We found an overarching major theme in the women's experiences of taking ART based on their descriptions across interviews: ART Adherence as a Balancing Act. All of the women reported that they were striving to adhere to ART while having to navigate numerous daily challenges in the process. In addition, we identified four interrelated subthemes that defined the women's experiences within this pattern: Struggles of taking ART, Motivators to take ART, Reminders to take ART, and Emotional support to take ART (Table 3). The overarching theme and subthemes are presented with quotes that use pseudonyms to protect participant confidentiality.
The overarching major theme reflected across all interviews was that women were striving to adhere to ART while having to navigate daily challenges—balancing the positive and negative aspects of this experience as a pregnant WLWH. All 10 women discussed how intensely they disliked having to take ART but acknowledged the importance of adherence in the context of pregnancy. They connected the experience of taking ART with their own health and the health of their unborn child, as Mary stated
It was hard at first. … It's like, I have to do this because if I don't then I'm not going to be healthy and my baby's not going to be healthy and I want to live long because I want my babies to grow and I want to see them grow … if I don't take the medicine I'm going to be sick and I just don't want to be sick to the point where I have to make a will [out], as young as I am.
Women who took ART prior to the current pregnancy identified that taking ART during pregnancy was different and more difficult than when not pregnant. Sarah talked about wanting to be “normal” and how even when she was taking her medications without problems, she wished she did not have to take them. She described this as, “No worries of that thought crossing across your head—Oh, if you don't take them, it's going to get worse, you're going to die. Those thoughts … worry about my viral load and baby.” The women's daily struggles were compounded by the constant subconscious knowledge that they were living with a chronic illness that could be passed on to their own children and could take their own lives.
Struggles of Taking Antiretroviral Therapy
The women expressed a desire to take ART as prescribed, yet they described physical and emotional struggles associated with living with HIV. Physical symptoms such as nausea and vomiting were described by Diana:
First it (taking ART) was hard because I've never taken, like, three pills for 1 day or two pills, so it was really hard to take, just to swallow and keeping—and like after I would take them like a couple—always after I'll feel nauseous and I just want to throw up.
Swallowing pills was also described as a struggle, and some women were prescribed liquid formulations of the ART rather than pill forms because the pills were difficult to swallow. These physical struggles had an emotional component as well because they were a constant reminder about living with HIV and brought the diagnosis to the front of consciousness.
Coming to terms with the diagnosis in the context of pregnancy was also part of the struggle of adhering to ART. Maria described taking ART as “horrible” and was very aware of the emotional toll of her experience: “I just feel ashamed coming here (the clinic) seeing all these people. It's just—I don't know. I'm—how do I explain it? I just feel ashamed, I let myself down. Why should I get something like this?”
The women reported trying to not miss any doses of ART but that it was an ongoing struggle to take every dose on time. They reported feeling badly about missing doses and acknowledged that they were dealing with competing responsibilities. Sarah felt “disappointed” in herself when she missed a dose or was late; her goal was to take her ART at the same time every day. She further explained,
It's hard because since I'm so busy I have to make sure I don't miss none because I don't want to worry about my viral load's going to go up or down … taking my son to school, making sure he's properly dressed, fed, making sure [my other son] is fed, then I wake up my brother to tell him I'm heading out to work. Then got to wait till my son gets out of school.
Motivators to Take Antiretroviral Therapy
Although the women experienced emotional and physical struggles, they also identified multiple motivators that helped them take their ART as part of the balancing act of taking ART during pregnancy. Staying healthy was a key motivator because they recognized the importance of the medication to keep the “viral load down and T cells high,” so that they could be alive for their children. Laura described,
I can't let it go into the AIDS factor and then I get sick and then I die, so I've got to take my medicines to keep it where it's at, knowing it'll probably go there, but not right now …. Got to keep it where it's at, keep my levels down, keep the up levels where they supposed to be, keep the down ones where they supposed to be. So, take my medicine.
The women's unborn babies were also a strong motivator to take ART. All of the women identified the importance of taking ART for the health of their unborn children. When Nina was asked why she took her ART, she reflected,
I think—because before I was pregnant I really didn't have to take any medicine because my immune system was still good, but now that I'm pregnant I think I have to get back into the use of taking medication, because I wasn't taking it before. So now it's like I have to take it so I can have a healthy baby.
Another woman simply stated, “Got to be healthy for the babies.”
The women were also motivated to take ART because they saw the baby as an “innocent” person who did not deserve to have HIV, and they knew that they were responsible for reducing the risk of perinatal transmission. This motivation was illustrated by Maria:
I will do anything to be okay, so I know I have to take this drug and I don't want anything to be wrong with this baby because she is innocent, she doesn't know anything. I got this HIV on my own, so I don't want anything—I don't want it to affect anybody. Let me not even say – anybody … I just pray it doesn't affect the baby. That's what I've been thinking of. That's why I'm taking my meds. I will do anything just not to pass it to the baby.
Reminders to Take Antiretroviral Therapy
In addition to being self-motivated to take ART during pregnancy, the women described reminders by others in their environments that facilitated adherence despite challenges of living with HIV and taking ART. Some women relied solely on themselves, whereas others were reminded by significant others. Some reminders were simple and practical. Having a specific schedule or setting an alarm helped remind them when to take their ART. Being purposeful about taking ART the same time every day and being prompted by routine activities of daily life were also reminders. Gina had multiple reminders of her dose times, “Yeah, I'm on a schedule and then besides that if I'm not at home and I know it's time for me to take my medicine I got reminders on my phone, so I know.” Some women intentionally relied on themselves to take ART, although others felt that they had no one else to rely on for reminders. Linda described using an alarm on her phone and that no one else helped to remind her because it was her “business.”
Fathers of the babies also provided reminders to women to take their ART. Gina described the father of her baby as checking in with her about her ART:
Besides me, my boyfriend would be the next person because he's there. We stay together, so it's like he'll ask like, “Oh, have you—remember you've got to take your medicine today. Have you took your medicine today?” I'll be like, “Yeah, I took it.”
Similarly, Nina talked about how her boyfriend woke her up to ensure she took her nighttime dose.
Emotional Support to Take Antiretroviral Therapy
Although the women were navigating the struggles of living with HIV that hindered taking ART as scheduled, they reported many sources of emotional support that assisted them with adherence. Sources of emotional support were health care providers, their mothers, other family members, friends/peers, and the fathers of the babies. As Diana described her experience, support from health care providers was significant:
At first it was very hard for me to come to this hospital, it has helped me a lot because they have really—they have not just been doctors to me, they have been just like friends—I feel like friends actually because they just give me that support where you can call us any time and sometimes I call. I'm like I'm so up and down.
The mothers of the women played key roles in supporting their daughters. Linda, who was diagnosed during pregnancy, described the support she received from her own mother when she told her the news of being pregnant
…and then it was my mom, she, she couldn't believe it, she found out about both (HIV diagnosis and pregnancy). She was excited about it (the pregnancy), buying gifts and things. As far as HIV diagnosis, it took a while to really tell my mom. I really wanted to keep it to myself until I was ready. So, I just decided, hey, she is going to find out, “Mom,” I was like, “I have HIV.” And even since then she has been a great support.
Eight of the 10 women described their relationships with the fathers of the babies as supportive in regard to HIV and ART adherence. The other two women reported not being able to freely discuss HIV with the fathers (who were also living with HIV) of their babies and did not receive support from them while taking ART. Most of the individuals who were supportive knew of the women's HIV status. However, some women had not disclosed their HIV status to those who were identified as support for taking ART. Even when the women were not able to disclose their HIV status to family and friends, they expressed the importance of the emotional support to ease the challenges associated with taking ART.
Our study was unique because we used a phenomenological approach to focus on pregnant women's lived experiences with ART adherence from their own perspectives (their thoughts, feelings, and actions), thus increasing our understanding of the experience. Studies have described factors associated with nonadherence: adverse HIV health symptoms, depression, feeling overwhelmed, illicit drug use, and alcohol and cigarette use (Anderson, 2012; Bardeguez, et al., 2008; Mellins, et al., 2008; Nachega, et al., 2012; Stevens & Hildebrandt, 2009; Wilson et al., 2001). In contrast, our study provided rich details and insight into the experience of what it was like to be pregnant, living with HIV, and taking ART. Our results show how taking ART affected multiple aspects of the women's daily lives and the balancing act that they experienced when adhering to ART. The women in our study struggled with the physical and emotional consequences of ART and, at the same time, aspired to the positive health outcomes that ART promised. This struggle was described by all of the women regardless of having had a previous pregnancy with an HIV diagnosis or the timing of diagnosis. Similar to findings from women diagnosed with HIV during pregnancy (Kelly, Alderdice, Lohan, & Spence, 2012), our participants derived meaning from ART adherence, expressing hope for their own and their babies' health and overall future.
The women felt a constant battle between negative and positive aspects of taking ART during pregnancy; some days they focused on the negative (physical difficulty of swallowing pills, inconvenience, burden of strict timing of doses) and other days they focused on the positive outcomes (baby's health, personal future, and health). Adherence to ART was a struggle for all of the women, even for those who reported not missing a single dose. Similar results in nonpregnant women found missing doses to be part of the experience and that even taking a dose late was better than missing it completely; life was complicated, and the women found taking medications difficult (Stevens & Hildebrandt, 2009).
The women identified multiple motivators to help them take ART. The two strongest motivators were (a) maintaining their own health so they could be alive as their children grew up and (b) minimizing the risk of perinatal transmission to their babies. Other qualitative studies have also found that WLWH were concerned about staying healthy so that their children would not be orphans, and they understood that adherence to ART was better during pregnancy because of a fear of transmitting HIV to their infants (Hebling & Hardy, 2007; Willcocks, Evangeli, Anderson, Zetler, & Scourse, 2016). To the best of our knowledge, our study is the first to highlight the importance of reminders from the fathers of the babies that helped women remember to take ART.
We also found that some key support persons during the pregnancy were not aware of the women's HIV status, which was consistent with research that found many young women did not disclose their HIV status (Carter et al., 2013). Disclosure of HIV status to women's mothers has been linked to increased adherence to ART (Demas et al., 2005); however, women in our study were able to obtain support from family and friends even when their HIV status was unknown.
The women in our study reported numerous struggles associated with adherence to ART during pregnancy. Consistent with other studies, including perinatal women (Mellins et al., 2008), women's experiences of negative side effects of ART made it difficult to adhere to dosing schedules. Even women who had been living with HIV for years and had had other children after being diagnosed, battled with coming to terms with the diagnosis and with the life-altering need to manage a chronic and potentially life-threatening disease.
Strengths and Limitations
Our study had several strengths. A major strength was recruiting pregnant WLWH who could report their experiences with accuracy as they were living it. The recruited sample was large enough to achieve redundancy to ensure that we obtained rich description about the ART adherence experience. Another strength of the study was that all of the women who were recruited also agreed to participate. This suggests that the researcher was perceived as engaging and trustworthy and, thereby, created a researcher-participant interaction that supported maximum discovery about the lived experience of taking ART during pregnancy. Furthermore, the first author who conducted all the interviews was visibly pregnant during the course of the study, and this might have allowed her to more easily gain the trust of the participants. The study participants also closely reflected the larger clinic population regarding age and ethnicity. A final strength was the implementation of several strategies (credibility, dependability confirmability, transferability) to enhance methodological rigor (Lincoln & Guba, 1985).
A limitation of this study was that the sample was recruited from an academic clinic with resources that may not be typically found in smaller clinics. The recruitment site had a multiprofessional team approach to delivering care, which may have been unique in comparison to other clinics providing care to pregnant women, which affected their experiences. However, the goal of our qualitative study was not to generalize the results but to obtain an in-depth understanding of the lived experience that these pregnant WLWH experienced taking ART. Another limitation of the study was that all participants spoke English and were predominately African American. Future research is needed with women receiving care in more diverse settings, those having more heterogeneous racial and ethnic groups, and those who might be at a greater risk of nonadherence due to language barriers.
Nonadherence comes at a high price for mothers and their unborn children, and it creates a burden for an already resource-constrained health care system. Adherence to ART by WLWH during pregnancy is critical to maximize the women's health and decrease transmission to the infant (Centers for Disease Control and Prevention, 2015a; 2015b; Bardeguez et al., 2008; McCabe et al., 2010; Mellins et al., 2008; Nachega et al., 2001). Our findings can be used by clinicians to help women create strategies that improve adherence to ART, a daily pill taking schedule that requires a lifetime commitment for maximum effectiveness. Continuous support from nurses and other health care providers is vital, both when women show signs of struggling with adherence to ART and when they are not showing overt signs of a struggle. Clinicians need to be sensitive to the emotional burdens of living with HIV while pregnant, a constant factor affecting the quality of life and adherence of all of these women.
Our findings suggest that a number of competing responsibilities in busy lives (schedules, work, caring for other children) can easily trigger nonadherence. During the prenatal period, allowing enough time for and initiating conversations about the different aspects of the patients' lives that may help or hinder the ability to adhere to ART is critical to understanding these experiences. Frequent and ongoing discussions about who the women can ask for help and what type of help they might need to support ART adherence is needed rather than focusing solely on pill counts and viral load. Nurses can help to identify potential support persons and how to approach the topic of ART and what type of information might be needed. For some women, this information might include a discussion about how to disclose HIV and strategies to adhere to ART. By encouraging women to foster supportive relationships, they will gain needed care for the pregnancy and after the birth when many new mothers require additional support.
Clinicians can also help women create simple strategies to take their medications every day and on time. The women in our study reported that having a routine improved adherence. Other women used their phones to send reminders or had an alarm sound at the appropriate time. Having a daily routine and having established reminders to facilitate adherence to ART were consistent with research in nonpregnant populations (Chenneville, Machacek, Walsh, Emmanuel, & Rodriguez, 2016).
Further research is needed to develop and test specific interventions to support WLWH during pregnancy while taking ART. These interventions need to take into account the women's daily lives and the balancing act that is required to successfully manage ART during this major life event.
Antiretroviral therapy is critical to decreasing perinatal HIV transmission, and pregnant WLWH have reported that ART adherence is a complex balancing act. Nurses are the frontline providers of support that these women need when taking ART. Supporting pregnant women's adherence to ART also fosters a new generation of children who can live HIV free and not face comorbidities and a costly lifetime medication regimen.
The authors report no real or perceived vested interests related to this article that could be construed as a conflict of interest.
- Pregnant WLWH strive for 100% adherence to ART but struggle with balancing therapy adherence and daily activities, such as caring for other children.
- Knowledge about the effectiveness of ART to reduce the risk of an infant being born with HIV is a key motivator to achieve adherence.
- Understanding the ongoing struggle for all WLWH to take ART during pregnancy can help nurses and other clinicians to be more empathic and provide continuous support throughout the perinatal period.
- WLWH can be encouraged to take ART when reminders are communicated in a caring way from a partner.
The authors thank Kathleen F. Norr, PhD, Kimberly Scarsi, Pharm, D, MS, FCCP, BCPS-ID, and Catherine Vincent, PhD, RN, for their guidance and support throughout the study. The authors also express their gratitude to the women who shared their stories about taking ART during pregnancy.
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