HIV-Infected Mothers’ Experiences During Their Infants’ HIV Testing Maureen T. Shannon
Correspondence to Maureen T. Shannon E-mail: [email protected] Maureen T. Shannon University of Hawaii at Manoa School of Nursing and Dental Hygiene 2528 McCarthy Mall Webster Hall 402 Honolulu, HI 96822
Abstract: Both survival with HIV and rates of perinatal HIV infection have significantly declined during the past decade, due to antiretroviral therapies that interrupt HIV transmission to the fetus and newborn. Although HIV is no longer routinely fatal to mothers or transmitted to fetuses, and the testing of newborns for HIV has been improved, evidence about HIV-infected mothers' experiences during the months of their infants' HIV testing predates these improvements. This qualitative study on 16 mothers was an analysis of interviews conducted several weeks after testing was completed and all infants had been determined to be uninfected. Mothers reported that their experiences evolved during the months of testing. Initial reactions included maternal trauma and guilt associated with infant testing. They then reported learning to cope with the roller coaster ride of repeated testing with the help of information from clinicians. By the end of the testing period, ambiguity began to resolve as they engaged in tentative maternal–infant attachment and expressed desire for a sense of normalcy. Need for support and fear of stigma persisted throughout. These findings expand current knowledge about this experience and suggest clinical strategies to guide HIV-infected women during this stressful period. ß 2015 Wiley Periodicals, Inc. Keywords: HIV-infected mothers; perinatal HIV transmission; qualitative research; infant HIV virologic testing Research in Nursing & Health, 2015, 38, 142–151 Accepted 14 January 2015 DOI: 10.1002/nur.21646 Published online 3 March 2015 in Wiley Online Library (wileyonlinelibrary.com).
HIV-infected mothers not only face the tasks that most postpartum women confront, including integrating the maternal role and responsibilities and adjusting to infant demands, diminished maternal sleep, and physiological changes after giving birth (Hunter, Rychnovsky, & Yount, 2009; Insana, Williams, & Montgomery-Downs, 2013 Otchet, Carey, & Adam, 1999), but also face challenges in managing their HIV disease, psychological health, quality of life, and societal acceptance (Blaney et al., 2004; Ethier et al., 2002; Ingram & Hutchinson, 1999; Murphy, Austin, & Greenwell, 2007; Murphy, Greenwell, & Hoffman, 2002; Rubin et al., 2011). Furthermore, they must successfully manage the specialized care for their HIV-exposed infants, including administering prophylactic antiretroviral (ARV) medications and ensuring that the infant completes HIV diagnostic testing during the first months of life. Although the rates of perinatal HIV transmission in the United States have declined to less than 2% during the past two decades (Panel on Treatment of HIV-Infected Pregnant Women and Prevention of Perinatal Transmission, 2014), the diagnostic
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testing process adds stress to an already challenging phase for postpartum women. The testing process has advanced in recent years, but it is not known whether these improvements have improved the experience for HIV-infected mothers. Early in the epidemic when testing was less refined, infants exposed to HIV underwent antibody testing for up to 18 months before a definitive diagnosis could be determined. At present, for HIV-exposed infants whose mothers received recommended antepartum and intrapartum ARV treatments, testing with DNA polymerase chain reaction (PCR) or RNA viral load assays is recommended at 14– 21 days, 1–2 months, and 4–6 months after birth (Panel on Antiretroviral Therapy and Medical Management of HIVInfected Children, 2014 [PATMMHC]). After a series of negative test results during the first months after birth, an infant without physical or other laboratory evidence of compromised immune status is considered to be HIVuninfected (Panel on Antiretroviral Therapy and Medical Management of HIV-Infected Children, 2014). The
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reduction of time until an infant's infection status is known is an apparent benefit, but mothers' experiences of their infants' HIV testing in the first few months after birth have not been studied since before the advent of maternal antiviral treatment and the shorter testing protocol. The purpose of this study was to explore and describe HIV-positive mothers' experiences of and perceptions about the HIV viral testing process of their infants.
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This investigation was a descriptive, qualitative sub-study nested in a prospective longitudinal study of HIV-infected mothers' stress and uncertainty during the HIV testing of their infants.
woman was infected perinatally. The mean age of the women was 32.25 years (range 19–43 years), with the majority of women reporting that they were nonHispanic white or African–American, married and/or living with the father of the baby, and had completed a mean of 14.25 years (range 11–20 years) of education. Fourteen of the women were aware of their HIV status prior to their recent pregnancy. All reported receiving antepartum and intrapartum antiretroviral (ARV) therapies. Subsequent to giving birth, 13 of the 16 women (80%) were advised to continue their ARV medications. However, at the time of the interviews, only eight of the 13 women (60%) were taking their ARV medications, due to a number of issues (e.g., inability to adhere to the regimen as prescribed, side effects of the medications). All of the infants received the recommended ARV prophylaxis, and all had been determined to be HIV-negative by 4–6 months of age.
Target Population
Data Collection
Mothers were eligible to enroll in the study if they met the following criteria: (i) HIV-positive status; (ii) age of 18 years or older; (iii) had an infant who had completed HIV DNA PCR testing with final results known for at least 4 weeks; and (iv) English-speaking. Mothers were not eligible to enroll if the infant had been diagnosed with chronic or acute debilitating disease.
Semi-structured interviews with HIV-positive mothers lasting between 45 and 70 minutes were conducted between 4 and 8 weeks after the completion of the infant's testing, at which point the infant's HIV infection status was confirmed. Interviews were audio-taped by the investigator and subsequently transcribed by a research assistant with periodic checks by the investigator. The interviews were conducted at a time when the infant was not scheduled to have a routine pediatric healthcare visit, acute healthcare visit (for any reason), or immunization visit, to limit the influence on the interview of maternal concerns about other infant health issues. Mothers also completed short questionnaires about maternal and infant demographic and health information.
Methods Design
Setting The study was conducted primarily in the San Francisco Bay Area but included women living in other regions of Northern California whose infants were undergoing HIV testing at regional perinatal HIV centers. The majority received perinatal services at two clinical sites, the UCSF Women's and Children's HIV Clinic located in San Francisco and the Alta Bates Medical Center's East Bay AIDS Center (EBAC) located in Alameda County.
Recruitment and Enrollment This study was reviewed and approved by the Institutional Review Boards (IRB) of the University of California, San Francisco (UCSF), Alta Bates Medical Center, and the University of Hawai‘i at Manoa. IRB-approved flyers describing the longitudinal and qualitative sub-study were posted at the UCSF and EBAC clinics. In addition, an IRB-approved letter was sent to clinicians in the San Francisco Bay Area who provided care to HIV-infected women. Of 20 women who participated in the longitudinal study, 16 consented to participate in the qualitative sub-study.
Sample All but one of the 16 women who participated in the interviews acquired HIV through heterosexual exposure; one
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Data Analysis Descriptive statistics on demographics and health information were generated using SPSS1 version 16. Responses to the interview questions were analyzed using Atlas.ti1 version 5.2. Analysis focused on HIV-infected mothers' experiences of and perceptions about their infants' HIV virologic diagnostic testing (Table 1). Manifest and latent content analyses were used to organize the mothers' statements about their infants' testing experiences. The analysis Table 1. Semi-Structured Interview Questions 1. Could you tell me what the process of having your baby tested for HIV infection has been like for you? 2. Has there been any particular thing that was most helpful for you during this time? And most difficult for you? 3. Has there been any particular thing that was most difficult for you during this time? 4. What would you tell other mothers about this process (for example, how to prepare for it or what to do to cope with it) ? 5. Is there anything else you would like to tell me?
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continued until saturation was reached. Member checking occurred throughout the process in order to confirm that the researcher was accurately interpreting maternal reports of their experiences and perceptions about their infants' HIV testing. In addition, the researcher wrote memos throughout the study in order to identify any biases and to reflect on the codes, categories, and themes that were emerging from the data. An expert in qualitative methods participated in the data analysis and interpretation to ensure trustworthiness of the process and the study's findings.
Results The spectrum of the maternal experiences and perceptions fell into three temporal phases, proceeding from the birth of the infant to the completion of the infant's HIV testing. The phases reflected mothers' stages of adaptation to the testing process. Phase One, initial reactions, included early maternal experiences of and perceptions about infant testing (e.g., birth to 3 weeks postpartum); Phase Two, learning to cope with ambiguity, occurred during the mid to late period of infant testing (e.g., 3–8 weeks); and Phase Three, resolution, generally occurred after 8 weeks. Finally, ongoing issues spanned the entire testing period (i.e., birth through 4–6 months postpartum) and in some instances, continued beyond the completion of infant testing.
Phase 1. Initial Reactions Physical and emotional reactions. Almost half of the mothers (7/16) vividly described their emotional and physical reactions to watching their infants have blood drawn for the HIV test. For a majority, this was identified as the most difficult aspect of the entire testing process. This was compounded by fear about the result of the test: that this procedure could reveal that their infant was, in fact, infected. In regards of most difficult, I think, seeing my baby have to go through this, seeing her have to be stuck, you know, the needle, the drawing of the blood, the tying of the latex on her arms [as a tourniquet] at such a young age. You know, it, it scares me. (Participant 9) I just broke down. But even though he has to get tested, you know, it's a needle inside your little baby. That's just stressful. (Participant 4) I remember being pretty traumatized by it because it felt very unfair that she should have to go through that as an infant, to be poked and prodded and, you know, have blood drawn and stuff like that. (Participant 12) In some instances, mothers had even more difficulty during their infants' blood draws because of their own
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experiences. Some reported being so upset that they were unable to comfort their infants during the procedure. The hardest part is just, and it's something that can't be avoided, it's just how upset it makes her. Right when she gets, right when she gets her blood drawn. And, you know, that's with any baby that gets blood drawn, I think for anything. But, and that's why I always make someone go with me because I personally have a really hard time having my own blood drawn, so watching her and being so upset, it makes me too nervous to actually be able to hold her still. (Participant 6)
Guilt and regret. Mothers also verbalized feelings of guilt, accountability, and regret for having placed their infants at risk for acquiring HIV infection and, therefore, the need to undergo the laboratory testing. I don't like that [infant blood drawing]. It's always hard for me, I don't like needles and having the baby cry and knowing that it's kind of my fault . . . it's hard to take. (Participant 13) To see my kids, what they go through crying and pain. I hate that. I blame myself. If I could take it back I would in a second. (Participant 11) One mother whose previous child died of AIDS was particularly vocal about the distress associated with the laboratory procedures. She recalled procedures that she had witnessed her deceased child undergo, and the memories were resurfacing as she watched her new infant undergo testing: The most difficult was physically going and having the vampire take the blood because that's hard to watch with your child. Not that it wouldn't be hard for anyone. But the memory of having to watch that with my other daughter in situations like spinal taps and things like that. I think it's even harder now for me to do those kinds of visits because it's different after having gone through that with my first daughter. (Participant 15)
Phase 2. Learning to Cope with Ambiguity The “roller coaster” ride of infant HIV testing. All the mothers described experiencing recurring stress due to unknown outcome of their infants' tests throughout the months of the testing period. The majority described the stress as most intense after each test before the results were
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known, followed by a sense of relief when the results were reported to them. One mother succinctly described the experience as, “Um, the process has been like a roller coaster for me” (Participant 2). Another mother described this roller coaster experience in detail: You know, you just think to yourself, “Okay, here we go again. Well alright, when are they going to call?” And, you know, when they do call and they just say, “Can you please call me back?”; you're thinking immediately, “Oh my gosh!” You know, it's almost like you want them to scream on your answering machine, “She's negative!” And you know that they can't. It's almost like a roller coaster, it really is! Because you go and you get her test, and then you wait, and that is seven days, or what five days, seven days or whatever. It is that while you're waiting, you are like you're on pins and needles, and you're so upset and you find out that they're negative and then it's like this huge weight has been lifted off you and you don't really think about it again until you have to go [through it] again. Because you have this, you're on this whole, “Yes, she's negative!” Then nothing and then, “Oh my gosh, I have to go do it again!”; and then it's all over again. You're like “Oh my gosh, what if?” And that whole feeling kinda creeps back into play. (Participant 16) Compounding the mothers' stress was the average of 7 days to receive the test results: The times where she had, you know, gotten the blood drawn and just waiting. There were days where I was having my “blue days” where I would think to myself – what if she is, you know? How much of an impact would that effect both of our lives? You know, there are days where I did think about that because you know in my case, and in cases of women like me, it is something that we have to face in life. Because as long as, you know, we are having children that possibility will always be there. (Participant 1) One mother articulated that even with the support and best intentions of healthcare providers, the stress about the uncertainty about the outcome of her infant's testing was ever-present: While I was there [at the pediatrician's office] I was comforted . . . “Don't worry about this”, “Don't worry about that”, “Blah, blah, blah.” But I always had that thing in the back of
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my head saying “What if, what if, what if?” (Participant 8)
Adapting and accepting. A third of the mothers (6/16) revealed that, as the process of infant testing proceeded, they adapted to the reality of having to go through these procedures. There was a sense that with every negative result and ongoing information from clinicians about how well the infants were doing, the process became less difficult. In the beginning it was hard. Like her first thing was real, real difficult; and then the second one was more, it was more understanding for me. And then the third one, I was okay because her doctor was telling me that with the first and the second one if it came back okay then more than likely she's okay. Because they will be able to detect it [HIV infection] the more months that she's got it, it would have showed by now. (Participant 10) In some instances, mothers had very pragmatic views about the need for the procedures, that it was a part of their lives, and that they would have to move through it, even though it would be hard for them to observe. So, I think that it was, overall, I think it was a necessary thing obviously, but it was pretty clear-cut, easy to deal with, once we got into the swing of things. (Participant 16) A positive attitude about living with HIV appeared to help some mothers. Personally living with HIV and doing well with the disease reassured them that it would be possible for their infants to live well also if they were infected. Just thinking that, you know, what if my infant, who's pretty much innocent from birth, has this virus that she has to live with that is causing her pain. That was pretty difficult for me. But I tried not to think about that part of it too much because I have accepted that I have this virus. I've accepted that people can live with it. (Participant 9)
Using knowledge to cope. All mothers stated the importance of finding out as soon as possible whether their infants were infected because they knew that early identification and access to appropriate treatment had been critically important in combating their own disease. First and foremost it's been helpful and useful to get him tested early ‘cause I know early
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intervention is the best intervention, i.e., myself. (Participant 12) But you have to keep pressing on, moving on, because you want to know and you want to know what is best for your baby, you know. You don’t want your baby to be walking around here with the disease. (Participant 16) The majority of mothers said that access to up-todate information about HIV treatments and testing in order to increase personal knowledge was a critical need that developed as they learned to cope with the process of their infants' HIV testing. They stated that there was no way to really prepare for the experience of having their infants tested for HIV, but having knowledge about the process did help them to cope with whatever the results might be. But it's worth it because then you know how to deal with situations, you know to deal with the baby, you know how to deal with medications. And then not only that, you have a team of doctors talking to you and walking you through it. So, it's okay, whatever you're feeling and whatever you're going through, because you have to have the knowledge in order for your baby to be okay. (Participant 4) In addition, some mothers (5/16) reported that the knowledge they gained about HIV during the pregnancy and subsequent HIV testing of their infants helped them cope with their own infection and reinforced the importance of receiving appropriate care, not only during pregnancy but after giving birth: Now I go to my doctor's appointments and I make sure I'm there. It [having her infant tested] was just something that really helped me KNOW about HIV because I really didn't know it . . . actually I knew but I was “in denial.” So it really helped me get out of that “in denial” stage and looked at it inside out and outside in, to know. Cause I didn't know anything about it. I just thought I had it [HIV], I'm gonna die, so why should I go to the doctor? (Participant 3)
Phase 3. Resolution Tentative attachment. Some of the mothers (4/16) stated that although they loved their infants, there was some hesitancy during the testing period to completely attach to their infants emotionally and, in some instances, physically. However, when these mothers learned about Research in Nursing & Health
their infants' final HIV test results, the hesitancy about completely embracing their infants, as well as a fear of harming their infants due to maternal HIV infection transmission, appeared to resolve. So, you definitely have to be prepared mentally because this doesn't go away. It only goes away when all the tests come back negative. But if the tests don't come back negative, then that's definitely a risk that you're taking. So with me it's a joyful experience knowing that everything then came back clear, and, and negative and not positive. So that I can go on with my life and love my daughter like I'm supposed to, even though I've never stopped loving her. (Participant 3)
One mother's way of dealing with this fear was to resume her drug use. However, once her infant's negative status was confirmed, she stopped using drugs: And I love my children, trust me, I love both of them equally, the same. But when I was with N (her daughter), I couldn't look at her when I was not high. I was afraid to look at my daughter, to hold her. I was afraid I might hurt her, you know, so in order for me not to think that way was to, to block it. And when I block it, was when I was getting high . . . (Participant 8)
Resuming a “normal” life, as a woman living with HIV and a mother. The majority of the mothers mentioned the importance of having a normal life, or as normal a life as possible with HIV. Being able to be pregnant and give birth to a healthy, uninfected infant was a goal they had not thought possible when they first were diagnosed with HIV. Because in the beginning [of HIV infection], you know, you think I can't ever have children, my life will never be normal again because I have this. But it, it is, and, you know, now that I have a kid I feel like I do have that normal life that I always dreamed of before I found out I had the virus. So this whole experience just gives me a better insight that, you know, there is hope. You know, because you're HIV positive doesn't mean that your life ends. Life does go on and you can live it as normal as possible. (Participant 5) You know there's other people that have gone through it . . . and have lived through it and are doing fine with it. And you start to realize that you're not necessarily like a
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pariah, you know, that you, you can be okay and normal. (Participant 6) The mother who had acquired HIV infection perinatally from her own mother was focused on her uninfected infant being able to avoid all the difficulties she herself had faced growing up with HIV infection: “I hope she has a normal life. I hope she doesn't have to go through what I went through” (Participant 13). Finally, one mother spoke openly about discussions with her husband about having another baby. Although she acknowledged that going through the pregnancy and then the HIV testing of their infant was difficult, the issue about HIV infection was no longer a factor in their discussions about future childbearing. Their conversations were addressing issues that most “normal” (HIV uninfected or unaffected) couples face: You know, the only thing I can say is we're still on the fence about having a second child, but I think I feel good enough about this experience that I think we'd do it again. Because we've questioned ourselves about having a second child, and the HIV testing process hasn't even come into question. It hasn't even been like, “Oh, should we go through the risk again?” It's been more like, like “Can we handle a second kid?” Or, “Do we want him to have a sibling?” or, “Do we want to go through the whole newborn thing again?” So HIV hasn't really come into play . . . it's [HIV] not really part of the decision. (Participant 12)
Ongoing Issues Need for support. Throughout the testing period, non-judgmental support was critical to mothers' ability to cope. The sources of support varied among the mothers, but the majority cited the importance of support from their infant's and/or the mother's clinician. Most often the support was in the form of providing information and answering questions about the infants, but many mothers also mentioned being grateful for the willingness of clinicians to take time to listen to them, quickly return their phone calls, and be patient when they needed reinforcement about their infant's health or further clarification about the testing. The most helpful was knowing that the doctors would answer my questions. I could call them at any time and ask them the results of lab tests. And when I needed to know, I could always call them. I was able to ask anybody for help and ask questions. (Participant 7)
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I think the most helpful is having staff that can really relate to you and understand how, stressful you are in a case like this, and knowing, that every issue is very sensitive. And when you're doing these kinds of tests there are certain things that you may not understand but that, you know, having the proper staff that's willing and ready to explain these things to you, whatever you're going through, they're willing to take the time out and assist you in any way. (Participant 9) In some instances, just the presence and understanding of someone the mother trusted when she was feeling particularly vulnerable made a difference. Often this person was a spouse or partner; in some cases, it was a close family member or friend. I think that you need at least one person, whether it be your spouse or your mother or your father or your counselor or whoever, that you can draw on to say, “Look, I am feeling the pressure and feeling really anxious and upset. I'm nervous about this right now. Can you just listen to me?” And more so than even getting, for me, at least getting answers back from someone was just knowing someone was just going to listen to me and they were going to not necessarily nurture or console me but just give me that hug and say, “You know what, I'm here for you if you need me again” or, you know, “Is there anything I can do to alleviate a little bit of pressure?” Not necessarily that you'd even take ‘em up on it. But just that somebody understands that, not necessarily what you’re going through, but understands that they need to be there for you and that they're willing to be there to be a support. And that, that was huge. I was very lucky to have more than, you know, my spouse. My mother and my father both have been incredible throughout this entire process. (Participant 13) Some mothers (5/16) did wish for support from other HIV-infected women who had gone through this experience. Some felt that not having access to a peer group that they could openly discuss their fears and concerns about their infants and themselves was a gap in services. But if I knew that I was talking to someone who felt the same way about this as I did, then I would feel comfortable talking to them because I don't have to hide anything. I don't have to sugar-coat it or beat around the
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bush or word it in a different way or use a “what if” situation; I can just say “Oh well this is happening to me” because I know the person listening knows exactly what I'm talking about because you're dealing with the same thing as me. (Participant 3)
Fear of disclosure as a barrier to support. Some of the mothers (5/16) voiced a fear of disclosure of their HIV infection because negative reactions could adversely affect their lives and/or the lives of their infants. Therefore, they chose not to access support or services that were available to them. Although I realize I would make some new friends that would probably be much better than my old friends. There's still that fear there. But our number one reason for not saying anything is because of our daughter. My fear is, is that if someone, if people were to know [about her infant's HIV testing] and it was to be out in the open . . . I don't want her to be shunned, her being a completely healthy negative child. (Participant 6) Even though I'm probably missing out on a lot of opportunities that I could probably take advantage of if I were more open with it [HIV infection], you know . . . just probably an abundance of services. But you know I want to live a normal life, so I have to go on with my life like it's normal and do the things on my own. (Participant 15)
Discussion These mothers' statements revealed a complex reaction to their infants' HIV testing process. Having to repeat the cycle of HIV testing created a prolonged period of ambiguity, leading to a roller coaster of feelings of anxiety, stress, and guilt. Adapting to and accepting the process as necessary was enhanced with each negative HIV test result, as was found in previous research on this experience (Shannon, Kennedy, & Humphreys, 2008). One of the most difficult experiences for these mothers was witnessing their infants undergoing phlebotomies. The majority of mothers experienced intense emotional stress, guilt, and, in some instances, negative physical reactions during these procedures. For some mothers, the distress may be associated with their own fear of phlebotomies. For others, it is likely related to the psychological experience of the testing that revealed their own diagnosis with HIV infection (Nelms, 2005). The physical reactions that some mothers in this study experienced have not been described previously and are important for clinicians to consider,
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especially if there is an expectation that mothers will be present during and/or participate in their infants' phlebotomies (e.g., assisting with stabilizing the infant during the procedure). The stress of their infants' ambiguous HIV status may affect the mental health of HIV-infected mothers. Stress, distress, and depression in HIV-infected women have been correlated with dysfunctional maternal–infant interactions at 6 weeks postpartum (Oswalt & Biasini, 2012), and emotional and behavioral problems in uninfected children (Elgar, McGrath, Waschbusch, Stewart, & Curtis, 2004). Although some researchers have reported a prevalence of depressive symptoms in HIV-infected pregnant and postpartum women similar to uninfected women (Bonacquisti, Geller, & Aaron, 2014; Ethier et al., 2002), others have found that HIVinfected women have an increased prevalence and severity of depressive symptoms (Kapetanovic et al., 2009; Oswalt & Biasini, 2012), especially if diagnosed with HIV during pregnancy (Kwalombota, 2002). Moreover, the stress of infant HIV testing may diminish a mother's ability to care for herself. In previous research, a majority of mothers prioritized concerns about their infants' health and other socioeconomic issues over their own health (Butz et al., 1993; D’Auria, Christian, & Miles, 2006; Shannon et al., 2008). Mothers' adherence to maternal ARV regimens may decline by 30–56% during the postpartum period (Bardeguez et al., 2008; Mellins et al., 2008; Murphy et al., 2002). In this study, the mothers' adherence to ARV medications in pregnancy was reportedly 100% but declined to 60% during the testing period of their infants. One mother who was so overwhelmed with the stress of infant testing that she resumed substance abuse until the infant's infection status was confirmed to be negative. If even more rapid methods of newborn HIV infection detection are developed, it will not only benefit the infant by reducing time on prophylactic medications but will decrease the time in which mothers focus on their infants' concerns at the expense of their own healthcare needs. The mothers discussed the importance of reliable support during this time, and as in previous studies (D'Auria et al., 2006; Lazarus, Struthers, & Violair, 2009; Lindau et al., 2006), ongoing communication with and support from clinicians, a close family member, or friend helped them move through moments of feeling particularly vulnerable. Although some stated that talking with a peer would be helpful, others indicated that they were not ready to do so due to concerns about HIV disclosure and the stigma associated with the disease. This is in contrast to the findings of Lazarus et al. (2009), in which HIV-infected mothers sought out support from their social networks to help them cope with their stress. In addition, contrary to other reports (D'Auria et al., 2006; Nelms, 2005; Pittiglio & Hough, 2009), the mothers in this study rarely mentioned spirituality, praying, or seeking religious counsel as coping mechanisms. Some mothers described a guarded approach to emotionally embracing their infants until the infants' health had
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been confirmed. Delayed maternal–-fetal attachment has been observed in women undergoing prenatal genetic screening, even when the test results are in a normal range, and in women with incidental, non-pathologic findings on a prenatal fetal ultrasound (Cristofalo, Pietro, Costigan, Nelson, & Crrino, 2006; Lawson & Turriff-Jonasson, 2006; Rowe, Fisher, & Quinlivan, 2009). This delayed maternal–fetal attachment often resolves once there is conclusive evidence that the fetus is normal (Rowe et al.). Once the mothers in this study had conclusive evidence that their infants were not infected, they were able to emotionally attach to them without hesitancy. The impact on maternal–infant attachment of the process of HIV detection, requiring multiple tests over a period of months, is unlike other newborn screening tests. Although there are some parallels with genetic screening, including the anticipated uncertainty about whether an infant will be affected and potential guilt of transmitting inherited diseases, HIV has unique features, including stigmatization. However, in a recent study on mothers whose infants had cardiac surgery before 3 months of age (Jordan et al., 2014), 23% reported difficulties bonding with their infants and 19% experienced anxiety and worry, suggesting that mothers with infants in an ambiguous state of health are at risk of difficulties with attachment. The mothers in the present study expressed a desire for having a normal life, which for many women includes being a mother. In addition to the well documented challenges faced by most mothers of infants, HIV-infected mothers simultaneously had to live with ambiguity, a complicated medication schedule, and painful procedures to their infants, all stemming from their own HIV status. Of note, their infants' complicated prophylactic ARV medication regimen was never mentioned as an issue. The hope of having a “normal” infant and “normal” mothering and family experience seemed to become real to these women once they had confirmation that their infants were uninfected and would be able to grow up without facing the challenges and stigma of HIV. This is consistent with other evidence of the importance to those with HIV of a life without social isolation due to stigmatization (Giles, Hellard, Lewin, & O'Brien, 2009; Nelms, 2005). Improvements in HIV treatment and longevity made these mothers' experience different from those in earlier studies. In a study also conducted during the infant testing period (D'Auria et al., 2006), but earlier in the HIV epidemic, when HIV mortality was high and ARV treatment was limited, mothers expressed similar concerns for the well-being of their babies, but their main concern was not surviving or staying healthy enough to care for their infants. Many had identified legal guardians to care for their children in anticipation of their death due to HIV. The couple in this study already debating about whether or not to have another child provides a sharp contrast, reflecting advances in treatments resulting in a prolonged life for
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HIV-infected mothers, as well as the integration of HIV as a manageable chronic disease.
Limitations and Strengths Results of this study may not reflect the experiences of other groups of HIV-infected mothers who face this process. The majority of participants were aware of their HIV infection status prior to becoming pregnant. Women who are newly diagnosed during pregnancy or at delivery may have greater anxiety, guilt, and possibly confusion about the process of infant HIV testing. All of the women in this study received specialized and coordinated obstetrical, pediatric, and HIV-specific care at centers where extensive experience and support systems were available to them. HIV-infected women in areas where access to similar resources is limited or non-existent may have different experiences during early motherhood. In contrast to earlier studies of experiences of HIV-infected women, most of whom had acquired the infection through IV drug abuse or working in the sex industry, a strength of this study is documentation of the experiences of women who acquired HIV infection through heterosexual transmission, who constitute the majority of HIV women experiencing pregnancies, adding currency to our understanding of the experiences of HIV- infected mothers during the viral diagnostic testing of their infants.
Clinical Implications The documented desire to feel “normal” suggests that clinicians frame HIV disease as a chronic illness similar to other chronic conditions, which when managed successfully can lead to as normal a life as is possible. Nonetheless, it is important for clinicians to appreciate that the prolonged period of testing to determine an infant's HIV infection status can produce psychological stress with an adverse impact on maternal health. Infant HIV testing begins and continues during a particularly vulnerable point in the postpartum period, a time when maternal postpartum depressive symptoms may begin to surface. Closely monitoring these mothers for psychological symptoms and for relapses of harmful behaviors should be part of routine assessment during pregnancy and the period when infants are undergoing HIV testing. Moreover, given the documented reduction in adherence to maternal ARV medications during this time, it is also essential to ask about and reinforce maternal medication adherence, emphasizing that living a “normal” life is optimally accomplished when a mother remains healthy and able to raise her child to adulthood. Because of the physical reactions, a mother may experience when witnessing their infants' phlebotomies, options should be available for a mother to leave the room or to have someone accompany her for support during these procedures. As some mothers articulated feelings of
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limited attachment toward their infants due to uncertainty, monitoring mothers' interactions with their infants and listening to their concerns may identify those who need more support with transitioning to a parental role. In addition, mothers can be advised that this feeling has been reported by other mothers during infant HIV testing and can resolve over time. Most mothers relied on clinician support to help them cope; therefore, the time necessary to provide information about the process and address mothers' specific concerns should be factored into clinical visits. In some instances, clinicians may be the only source of support for a woman because of her fear of stigma for herself or her child if information about her infection, or the HIV testing of her infant, is disclosed. In addition, knowledge gained in these encounters can contribute to feeling more confident about remaining actively engaged in their own and their infants' care.
Conclusion This study contributes to the understanding of the early postpartum period for mothers with HIV infection by focusing on their experiences, with their infants' HIV virologic diagnostic testing. Maternal psychological and physical reactions specifically associated with witnessing laboratory procedures and perceptions of delayed or tentative maternal attachment have not previously been reported. Findings support previous reports of HIV-infected mothers' attention to their infants' health while sometimes neglecting their own health needs, including adherence to recommended ARV medications. Providing HIV-infected mothers with clinical support and essential information about HIV, adopting a perspective of being as “normal” as possible within the confines of the disease and the testing process, and monitoring their psychological health and interactions with their infants can promote their well-being and facilitate their transition to parenthood.
References Bardeguez, A. D., Lindsey, J. C., Shannon, M., Tuomala, R. E., Cohn, S. E., Smith, E., … Read, J. S. (2008). Adherence to antiretrovirals among US women during and after pregnancy. Journal of Acquired Immune Deficiency Syndromes, 48, 408–417. doi: 10.1097/QAI.0b013e31817bbe80 Blaney, N. T., Fernandez, M. I., Ethier, K. A., Wilson, T. E., Walter, E., & Koenig, L. J. (2004). Psychosocial and behavioral correlates of depression among HIV-infected pregnant women. AIDS Patient Care and STDs, 18, 405–415. doi: 10.1089/ 1087291041518201 Bonacquisti, A., Geller, P. A., & Aaron, E. (2014). Rates and predictors of prenatal depression in women living with and without HIV. AIDS Care, 26, 100–106. doi: 10.1080/09540121.2013.802277 Butz, A. M., Hutton, N., Joyner, M., Vogelhut, J., GreenbergFriedman, D., Schreibeis, D., & Anderson, J. R. (1993). HIVinfected women and infants. Social and health factors impeding
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utilization of health care. The Journal of Nurse-Midwifery, 38, 103–109. Cristofalo, E. A., DiPietro, J. A., Costigan, K. A., Nelson, P., & Crino, J. (2006). Women’s response to fetal choroid plexus cysts detected by prenatal ultrasound. Journal of Perinatology, 26, 215–223. D’Auria, J. P., Christian, B. J., & Miles, M. S. (2006). Being there for my baby: Early responses of HIV-infected mothers with an HIVexposed infant. Journal of Pediatric Health Care, 20, 11–18. doi: 10.1016/j.pedhc.2005.08.008 Elgar, F. J., McGrath, P. J., Waschbusch, D. A., Stewart, S. H., & Curtis, L. J. (2004). Mutual influences on maternal depression and child adjustment problems. Clinical Psychology Review, 24, 441–459. doi: 10.1016/j.cpr.2004.02.002 Ethier, K. A., Ickovics, J. R., Fernandex, M. I., Wilson, T. E., Royce, R. A. & Koenig, L. J. (2002). The Perinatal Guidelines Evaluation Project HIV and Pregnancy Study: Overview and cohort description. Public Health Reports, 117, 137–147. Giles, M. L., Hellard, M. E., Lewin, S. R., & O’Brien, M. L. (2009). The “work” of women when considering and using interventions to reduce mother-to-child transmission (MTCT) of HIV. AIDS Care, 21, 1230–1237. Hunter, L. P., Rychnovsky, J. D., & Yount, S. M. (2009). A selective review of maternal sleep characteristics during the postpartum period. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 38, 60–68. doi: 10.1111/j.1552–6909.2008.00309.x Ingram, D., & Hutchinson, S. A. (1999). HIV-positive mothers and stigma. Health Care for Women International, 20, 93–103. Insana, S. P., Williams, K. B., & Montgomery-Downs, H. E. (2013). Sleep disturbance and neurobehavioral performance among postpartum women. Sleep, 36, 73–81. doi: 10.5665/sleep.2304 Jordan, B., Franich-Ray, C., Albert, N., Anderson, V., Northam, E., Cochrane, A., & Menahem, S. (2014). Early mother-infant relationships after cardiac surgery in infancy. Archives of Disease in Childhood, 99, 641–645. doi: 10.1136/archdischild-2012-303488 Kapetanovic, S., Christensen, S., Karim, R., Lin, F., Mack, W. J., Operskalski, E. … Kovacs, A. (2009). Correlates of perinatal depression in HIV-infected women. AIDS Patient Care and STDs, 23, 101–108. doi: 10.1089/apc.2008.0125 Kwalombota, M. (2002). The effect of pregnancy in HIVinfected women. AIDS Care, 14, 431–433. doi: 10.1080/ 09540120220123829 Lawson, K. L., & Turriff-Jonasson, S. I. (2006). Maternal serum screening and psychosocial attachment to pregnancy. Journal of Psychosomatic Research, 60, 371–378. doi: 10.1016/j. jpsychores.2006.01.010 Lazarus, R., Struthers, H., & Violari, A. (2009). Hopes, fears, knowledge and misunderstandings: Responses of HIV-positive mothers to early knowledge of the status of their baby. AIDS Care, 21, 329–334. doi: 10.1080/09540120802183503 Lindau, S. T., Jerome, J., Miller, K., Monk, E., Garcia, P., & Cohen, M. (2006). Mothers on the margins: Implications for eradicating perinatal HIV. Social Science & Medicine, 62, 59–69. doi: 10.1016/j.socscimed.2005.05.012 Mellins, C. A., Chu, C., Malee, K., Allison, S., Smith, R., Harris, L., … Larussa, P. (2008). Adherence to antiretroviral treatment among pregnant and postpartum HIV-infected women. AIDS Care, 20, 958–968. doi: 10.1080/09540120701767208
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Murphy, D. A., Austin, E. L., & Greenwell, L. (2007). Correlates of HIV-related stigma among HIV-positive mothers and their uninfected adolescent children. Women and Health, 44, 19–42. doi: 10.1300/J013v44n03_02 Murphy, D. A., Greenwell, L., & Hoffman, D. (2002). Factors associated with antiretroviral adherence among HIV-infected women and children. Women and Health, 36, 97–111. doi: 10.1300/ J013v36n01_07 Nelms, T. P. (2005). Burden: The phenomenon of mothering with HIV. Journal of the Association of Nurses in AIDS Care, 16, 3–13. doi: 10.1016/j.jana.2005.05.001 Otchet, F., Carey, M. S., & Adam, L. (1999). General health and psychological symptom status in pregnancy and the puerperium: What is normal. Obstetrics & Gynecology, 94, 935–941.
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Panel on Treatment of HIV-Infected Pregnant Women and Prevention of Perinatal Transmission. (2014). Recommendations for use of antiretroviral drugs in pregnant HIV-1-infected women for maternal health and interventions to reduce perinatal HIV transmission in the United States. Retrieved from http://aidsinfo.nih.gov/contentfiles/lvguidelines/perinatalgl.pdf. Pittiglio, L., & Hough, E. (2009). Coping with HIV: Perspectives of mothers. Journal of the Association of Nurses in AIDS Care, 20, 184–192. doi: 10.1016/j.jana.2009.02.001 Rowe, H., Fisher, J., & Quinlivan, J. (2009). Women who are well informed about prenatal genetic screening delay emotional attachment to their fetus. Journal of Psychosomatic Obstetrics & Gynecology, 30, 34–41. doi: 10.1080/01674820802292130
Oswalt, K. L., & Biasini, F. J. (2012). Characteristics of HIV-infected mothers associated with increased risk of poor mother-infant interactions and infant outcomes. Journal of Pediatric Health Care, 26, 83–91. doi: 10.1016/j.pedhc.2010.06.014
Rubin, L. H., Cook, J. A., Grey, D. D., Weber, K., Wells, C., Golub, E. T., … Maki, P. M. (2011). Perinatal depressive symptoms in HIV-infected versus HIV-uninfected women: A prospective study from preconception to postpartum. Journal of Women’s Health, 20, 1287–1295. doi: 10.1089/jwh.2010.2485
Panel on Antiretroviral Therapy and Medical Management of HIVInfected Children. (2014). Guidelines for the use of antiretroviral agents in pediatric HIV infection. Retrieved from http://aidsinfo. nih.gov/contentfiles/lvguidelines/pediatricguidelines.pdf.
Shannon, M., Kennedy, H. P., & Humphreys, J. C. (2008). HIVinfected mothers’ foci of concern during the viral testing of their infants. Journal of the Association of Nurses in AIDS Care, 19, 114–126. doi: 10.1016/j.jana.2007.10.004
Acknowledgments This research was funded in part by the National Institute of Child Health and Human Development Extramural Associates Research Development Award (1G11HD054969) and a National Institute of Nursing Research National Research Service Award (F31-NR008181). The author thanks Dr. Janice Humphreys for sharing her expertise in qualitative analysis, Mr. Greg Pantell for his meticulous and timely transcription of the interviews, and Dr. Robert Pantell for his review of the manuscript prior to its submission for publication.
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Correspondence to Maureen T. Shannon E-mail: [email protected] Maureen T. Shannon University of Hawaii at Manoa School of Nursing and Dental Hygiene 2528 McCarthy Mall Webster Hall 402 Honolulu, HI 96822
Abstract: Both survival with HIV and rates of perinatal HIV infection have significantly declined during the past decade, due to antiretroviral therapies that interrupt HIV transmission to the fetus and newborn. Although HIV is no longer routinely fatal to mothers or transmitted to fetuses, and the testing of newborns for HIV has been improved, evidence about HIV-infected mothers' experiences during the months of their infants' HIV testing predates these improvements. This qualitative study on 16 mothers was an analysis of interviews conducted several weeks after testing was completed and all infants had been determined to be uninfected. Mothers reported that their experiences evolved during the months of testing. Initial reactions included maternal trauma and guilt associated with infant testing. They then reported learning to cope with the roller coaster ride of repeated testing with the help of information from clinicians. By the end of the testing period, ambiguity began to resolve as they engaged in tentative maternal–infant attachment and expressed desire for a sense of normalcy. Need for support and fear of stigma persisted throughout. These findings expand current knowledge about this experience and suggest clinical strategies to guide HIV-infected women during this stressful period. ß 2015 Wiley Periodicals, Inc. Keywords: HIV-infected mothers; perinatal HIV transmission; qualitative research; infant HIV virologic testing Research in Nursing & Health, 2015, 38, 142–151 Accepted 14 January 2015 DOI: 10.1002/nur.21646 Published online 3 March 2015 in Wiley Online Library (wileyonlinelibrary.com).
HIV-infected mothers not only face the tasks that most postpartum women confront, including integrating the maternal role and responsibilities and adjusting to infant demands, diminished maternal sleep, and physiological changes after giving birth (Hunter, Rychnovsky, & Yount, 2009; Insana, Williams, & Montgomery-Downs, 2013 Otchet, Carey, & Adam, 1999), but also face challenges in managing their HIV disease, psychological health, quality of life, and societal acceptance (Blaney et al., 2004; Ethier et al., 2002; Ingram & Hutchinson, 1999; Murphy, Austin, & Greenwell, 2007; Murphy, Greenwell, & Hoffman, 2002; Rubin et al., 2011). Furthermore, they must successfully manage the specialized care for their HIV-exposed infants, including administering prophylactic antiretroviral (ARV) medications and ensuring that the infant completes HIV diagnostic testing during the first months of life. Although the rates of perinatal HIV transmission in the United States have declined to less than 2% during the past two decades (Panel on Treatment of HIV-Infected Pregnant Women and Prevention of Perinatal Transmission, 2014), the diagnostic
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testing process adds stress to an already challenging phase for postpartum women. The testing process has advanced in recent years, but it is not known whether these improvements have improved the experience for HIV-infected mothers. Early in the epidemic when testing was less refined, infants exposed to HIV underwent antibody testing for up to 18 months before a definitive diagnosis could be determined. At present, for HIV-exposed infants whose mothers received recommended antepartum and intrapartum ARV treatments, testing with DNA polymerase chain reaction (PCR) or RNA viral load assays is recommended at 14– 21 days, 1–2 months, and 4–6 months after birth (Panel on Antiretroviral Therapy and Medical Management of HIVInfected Children, 2014 [PATMMHC]). After a series of negative test results during the first months after birth, an infant without physical or other laboratory evidence of compromised immune status is considered to be HIVuninfected (Panel on Antiretroviral Therapy and Medical Management of HIV-Infected Children, 2014). The
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reduction of time until an infant's infection status is known is an apparent benefit, but mothers' experiences of their infants' HIV testing in the first few months after birth have not been studied since before the advent of maternal antiviral treatment and the shorter testing protocol. The purpose of this study was to explore and describe HIV-positive mothers' experiences of and perceptions about the HIV viral testing process of their infants.
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This investigation was a descriptive, qualitative sub-study nested in a prospective longitudinal study of HIV-infected mothers' stress and uncertainty during the HIV testing of their infants.
woman was infected perinatally. The mean age of the women was 32.25 years (range 19–43 years), with the majority of women reporting that they were nonHispanic white or African–American, married and/or living with the father of the baby, and had completed a mean of 14.25 years (range 11–20 years) of education. Fourteen of the women were aware of their HIV status prior to their recent pregnancy. All reported receiving antepartum and intrapartum antiretroviral (ARV) therapies. Subsequent to giving birth, 13 of the 16 women (80%) were advised to continue their ARV medications. However, at the time of the interviews, only eight of the 13 women (60%) were taking their ARV medications, due to a number of issues (e.g., inability to adhere to the regimen as prescribed, side effects of the medications). All of the infants received the recommended ARV prophylaxis, and all had been determined to be HIV-negative by 4–6 months of age.
Target Population
Data Collection
Mothers were eligible to enroll in the study if they met the following criteria: (i) HIV-positive status; (ii) age of 18 years or older; (iii) had an infant who had completed HIV DNA PCR testing with final results known for at least 4 weeks; and (iv) English-speaking. Mothers were not eligible to enroll if the infant had been diagnosed with chronic or acute debilitating disease.
Semi-structured interviews with HIV-positive mothers lasting between 45 and 70 minutes were conducted between 4 and 8 weeks after the completion of the infant's testing, at which point the infant's HIV infection status was confirmed. Interviews were audio-taped by the investigator and subsequently transcribed by a research assistant with periodic checks by the investigator. The interviews were conducted at a time when the infant was not scheduled to have a routine pediatric healthcare visit, acute healthcare visit (for any reason), or immunization visit, to limit the influence on the interview of maternal concerns about other infant health issues. Mothers also completed short questionnaires about maternal and infant demographic and health information.
Methods Design
Setting The study was conducted primarily in the San Francisco Bay Area but included women living in other regions of Northern California whose infants were undergoing HIV testing at regional perinatal HIV centers. The majority received perinatal services at two clinical sites, the UCSF Women's and Children's HIV Clinic located in San Francisco and the Alta Bates Medical Center's East Bay AIDS Center (EBAC) located in Alameda County.
Recruitment and Enrollment This study was reviewed and approved by the Institutional Review Boards (IRB) of the University of California, San Francisco (UCSF), Alta Bates Medical Center, and the University of Hawai‘i at Manoa. IRB-approved flyers describing the longitudinal and qualitative sub-study were posted at the UCSF and EBAC clinics. In addition, an IRB-approved letter was sent to clinicians in the San Francisco Bay Area who provided care to HIV-infected women. Of 20 women who participated in the longitudinal study, 16 consented to participate in the qualitative sub-study.
Sample All but one of the 16 women who participated in the interviews acquired HIV through heterosexual exposure; one
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Data Analysis Descriptive statistics on demographics and health information were generated using SPSS1 version 16. Responses to the interview questions were analyzed using Atlas.ti1 version 5.2. Analysis focused on HIV-infected mothers' experiences of and perceptions about their infants' HIV virologic diagnostic testing (Table 1). Manifest and latent content analyses were used to organize the mothers' statements about their infants' testing experiences. The analysis Table 1. Semi-Structured Interview Questions 1. Could you tell me what the process of having your baby tested for HIV infection has been like for you? 2. Has there been any particular thing that was most helpful for you during this time? And most difficult for you? 3. Has there been any particular thing that was most difficult for you during this time? 4. What would you tell other mothers about this process (for example, how to prepare for it or what to do to cope with it) ? 5. Is there anything else you would like to tell me?
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continued until saturation was reached. Member checking occurred throughout the process in order to confirm that the researcher was accurately interpreting maternal reports of their experiences and perceptions about their infants' HIV testing. In addition, the researcher wrote memos throughout the study in order to identify any biases and to reflect on the codes, categories, and themes that were emerging from the data. An expert in qualitative methods participated in the data analysis and interpretation to ensure trustworthiness of the process and the study's findings.
Results The spectrum of the maternal experiences and perceptions fell into three temporal phases, proceeding from the birth of the infant to the completion of the infant's HIV testing. The phases reflected mothers' stages of adaptation to the testing process. Phase One, initial reactions, included early maternal experiences of and perceptions about infant testing (e.g., birth to 3 weeks postpartum); Phase Two, learning to cope with ambiguity, occurred during the mid to late period of infant testing (e.g., 3–8 weeks); and Phase Three, resolution, generally occurred after 8 weeks. Finally, ongoing issues spanned the entire testing period (i.e., birth through 4–6 months postpartum) and in some instances, continued beyond the completion of infant testing.
Phase 1. Initial Reactions Physical and emotional reactions. Almost half of the mothers (7/16) vividly described their emotional and physical reactions to watching their infants have blood drawn for the HIV test. For a majority, this was identified as the most difficult aspect of the entire testing process. This was compounded by fear about the result of the test: that this procedure could reveal that their infant was, in fact, infected. In regards of most difficult, I think, seeing my baby have to go through this, seeing her have to be stuck, you know, the needle, the drawing of the blood, the tying of the latex on her arms [as a tourniquet] at such a young age. You know, it, it scares me. (Participant 9) I just broke down. But even though he has to get tested, you know, it's a needle inside your little baby. That's just stressful. (Participant 4) I remember being pretty traumatized by it because it felt very unfair that she should have to go through that as an infant, to be poked and prodded and, you know, have blood drawn and stuff like that. (Participant 12) In some instances, mothers had even more difficulty during their infants' blood draws because of their own
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experiences. Some reported being so upset that they were unable to comfort their infants during the procedure. The hardest part is just, and it's something that can't be avoided, it's just how upset it makes her. Right when she gets, right when she gets her blood drawn. And, you know, that's with any baby that gets blood drawn, I think for anything. But, and that's why I always make someone go with me because I personally have a really hard time having my own blood drawn, so watching her and being so upset, it makes me too nervous to actually be able to hold her still. (Participant 6)
Guilt and regret. Mothers also verbalized feelings of guilt, accountability, and regret for having placed their infants at risk for acquiring HIV infection and, therefore, the need to undergo the laboratory testing. I don't like that [infant blood drawing]. It's always hard for me, I don't like needles and having the baby cry and knowing that it's kind of my fault . . . it's hard to take. (Participant 13) To see my kids, what they go through crying and pain. I hate that. I blame myself. If I could take it back I would in a second. (Participant 11) One mother whose previous child died of AIDS was particularly vocal about the distress associated with the laboratory procedures. She recalled procedures that she had witnessed her deceased child undergo, and the memories were resurfacing as she watched her new infant undergo testing: The most difficult was physically going and having the vampire take the blood because that's hard to watch with your child. Not that it wouldn't be hard for anyone. But the memory of having to watch that with my other daughter in situations like spinal taps and things like that. I think it's even harder now for me to do those kinds of visits because it's different after having gone through that with my first daughter. (Participant 15)
Phase 2. Learning to Cope with Ambiguity The “roller coaster” ride of infant HIV testing. All the mothers described experiencing recurring stress due to unknown outcome of their infants' tests throughout the months of the testing period. The majority described the stress as most intense after each test before the results were
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known, followed by a sense of relief when the results were reported to them. One mother succinctly described the experience as, “Um, the process has been like a roller coaster for me” (Participant 2). Another mother described this roller coaster experience in detail: You know, you just think to yourself, “Okay, here we go again. Well alright, when are they going to call?” And, you know, when they do call and they just say, “Can you please call me back?”; you're thinking immediately, “Oh my gosh!” You know, it's almost like you want them to scream on your answering machine, “She's negative!” And you know that they can't. It's almost like a roller coaster, it really is! Because you go and you get her test, and then you wait, and that is seven days, or what five days, seven days or whatever. It is that while you're waiting, you are like you're on pins and needles, and you're so upset and you find out that they're negative and then it's like this huge weight has been lifted off you and you don't really think about it again until you have to go [through it] again. Because you have this, you're on this whole, “Yes, she's negative!” Then nothing and then, “Oh my gosh, I have to go do it again!”; and then it's all over again. You're like “Oh my gosh, what if?” And that whole feeling kinda creeps back into play. (Participant 16) Compounding the mothers' stress was the average of 7 days to receive the test results: The times where she had, you know, gotten the blood drawn and just waiting. There were days where I was having my “blue days” where I would think to myself – what if she is, you know? How much of an impact would that effect both of our lives? You know, there are days where I did think about that because you know in my case, and in cases of women like me, it is something that we have to face in life. Because as long as, you know, we are having children that possibility will always be there. (Participant 1) One mother articulated that even with the support and best intentions of healthcare providers, the stress about the uncertainty about the outcome of her infant's testing was ever-present: While I was there [at the pediatrician's office] I was comforted . . . “Don't worry about this”, “Don't worry about that”, “Blah, blah, blah.” But I always had that thing in the back of
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my head saying “What if, what if, what if?” (Participant 8)
Adapting and accepting. A third of the mothers (6/16) revealed that, as the process of infant testing proceeded, they adapted to the reality of having to go through these procedures. There was a sense that with every negative result and ongoing information from clinicians about how well the infants were doing, the process became less difficult. In the beginning it was hard. Like her first thing was real, real difficult; and then the second one was more, it was more understanding for me. And then the third one, I was okay because her doctor was telling me that with the first and the second one if it came back okay then more than likely she's okay. Because they will be able to detect it [HIV infection] the more months that she's got it, it would have showed by now. (Participant 10) In some instances, mothers had very pragmatic views about the need for the procedures, that it was a part of their lives, and that they would have to move through it, even though it would be hard for them to observe. So, I think that it was, overall, I think it was a necessary thing obviously, but it was pretty clear-cut, easy to deal with, once we got into the swing of things. (Participant 16) A positive attitude about living with HIV appeared to help some mothers. Personally living with HIV and doing well with the disease reassured them that it would be possible for their infants to live well also if they were infected. Just thinking that, you know, what if my infant, who's pretty much innocent from birth, has this virus that she has to live with that is causing her pain. That was pretty difficult for me. But I tried not to think about that part of it too much because I have accepted that I have this virus. I've accepted that people can live with it. (Participant 9)
Using knowledge to cope. All mothers stated the importance of finding out as soon as possible whether their infants were infected because they knew that early identification and access to appropriate treatment had been critically important in combating their own disease. First and foremost it's been helpful and useful to get him tested early ‘cause I know early
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intervention is the best intervention, i.e., myself. (Participant 12) But you have to keep pressing on, moving on, because you want to know and you want to know what is best for your baby, you know. You don’t want your baby to be walking around here with the disease. (Participant 16) The majority of mothers said that access to up-todate information about HIV treatments and testing in order to increase personal knowledge was a critical need that developed as they learned to cope with the process of their infants' HIV testing. They stated that there was no way to really prepare for the experience of having their infants tested for HIV, but having knowledge about the process did help them to cope with whatever the results might be. But it's worth it because then you know how to deal with situations, you know to deal with the baby, you know how to deal with medications. And then not only that, you have a team of doctors talking to you and walking you through it. So, it's okay, whatever you're feeling and whatever you're going through, because you have to have the knowledge in order for your baby to be okay. (Participant 4) In addition, some mothers (5/16) reported that the knowledge they gained about HIV during the pregnancy and subsequent HIV testing of their infants helped them cope with their own infection and reinforced the importance of receiving appropriate care, not only during pregnancy but after giving birth: Now I go to my doctor's appointments and I make sure I'm there. It [having her infant tested] was just something that really helped me KNOW about HIV because I really didn't know it . . . actually I knew but I was “in denial.” So it really helped me get out of that “in denial” stage and looked at it inside out and outside in, to know. Cause I didn't know anything about it. I just thought I had it [HIV], I'm gonna die, so why should I go to the doctor? (Participant 3)
Phase 3. Resolution Tentative attachment. Some of the mothers (4/16) stated that although they loved their infants, there was some hesitancy during the testing period to completely attach to their infants emotionally and, in some instances, physically. However, when these mothers learned about Research in Nursing & Health
their infants' final HIV test results, the hesitancy about completely embracing their infants, as well as a fear of harming their infants due to maternal HIV infection transmission, appeared to resolve. So, you definitely have to be prepared mentally because this doesn't go away. It only goes away when all the tests come back negative. But if the tests don't come back negative, then that's definitely a risk that you're taking. So with me it's a joyful experience knowing that everything then came back clear, and, and negative and not positive. So that I can go on with my life and love my daughter like I'm supposed to, even though I've never stopped loving her. (Participant 3)
One mother's way of dealing with this fear was to resume her drug use. However, once her infant's negative status was confirmed, she stopped using drugs: And I love my children, trust me, I love both of them equally, the same. But when I was with N (her daughter), I couldn't look at her when I was not high. I was afraid to look at my daughter, to hold her. I was afraid I might hurt her, you know, so in order for me not to think that way was to, to block it. And when I block it, was when I was getting high . . . (Participant 8)
Resuming a “normal” life, as a woman living with HIV and a mother. The majority of the mothers mentioned the importance of having a normal life, or as normal a life as possible with HIV. Being able to be pregnant and give birth to a healthy, uninfected infant was a goal they had not thought possible when they first were diagnosed with HIV. Because in the beginning [of HIV infection], you know, you think I can't ever have children, my life will never be normal again because I have this. But it, it is, and, you know, now that I have a kid I feel like I do have that normal life that I always dreamed of before I found out I had the virus. So this whole experience just gives me a better insight that, you know, there is hope. You know, because you're HIV positive doesn't mean that your life ends. Life does go on and you can live it as normal as possible. (Participant 5) You know there's other people that have gone through it . . . and have lived through it and are doing fine with it. And you start to realize that you're not necessarily like a
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pariah, you know, that you, you can be okay and normal. (Participant 6) The mother who had acquired HIV infection perinatally from her own mother was focused on her uninfected infant being able to avoid all the difficulties she herself had faced growing up with HIV infection: “I hope she has a normal life. I hope she doesn't have to go through what I went through” (Participant 13). Finally, one mother spoke openly about discussions with her husband about having another baby. Although she acknowledged that going through the pregnancy and then the HIV testing of their infant was difficult, the issue about HIV infection was no longer a factor in their discussions about future childbearing. Their conversations were addressing issues that most “normal” (HIV uninfected or unaffected) couples face: You know, the only thing I can say is we're still on the fence about having a second child, but I think I feel good enough about this experience that I think we'd do it again. Because we've questioned ourselves about having a second child, and the HIV testing process hasn't even come into question. It hasn't even been like, “Oh, should we go through the risk again?” It's been more like, like “Can we handle a second kid?” Or, “Do we want him to have a sibling?” or, “Do we want to go through the whole newborn thing again?” So HIV hasn't really come into play . . . it's [HIV] not really part of the decision. (Participant 12)
Ongoing Issues Need for support. Throughout the testing period, non-judgmental support was critical to mothers' ability to cope. The sources of support varied among the mothers, but the majority cited the importance of support from their infant's and/or the mother's clinician. Most often the support was in the form of providing information and answering questions about the infants, but many mothers also mentioned being grateful for the willingness of clinicians to take time to listen to them, quickly return their phone calls, and be patient when they needed reinforcement about their infant's health or further clarification about the testing. The most helpful was knowing that the doctors would answer my questions. I could call them at any time and ask them the results of lab tests. And when I needed to know, I could always call them. I was able to ask anybody for help and ask questions. (Participant 7)
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I think the most helpful is having staff that can really relate to you and understand how, stressful you are in a case like this, and knowing, that every issue is very sensitive. And when you're doing these kinds of tests there are certain things that you may not understand but that, you know, having the proper staff that's willing and ready to explain these things to you, whatever you're going through, they're willing to take the time out and assist you in any way. (Participant 9) In some instances, just the presence and understanding of someone the mother trusted when she was feeling particularly vulnerable made a difference. Often this person was a spouse or partner; in some cases, it was a close family member or friend. I think that you need at least one person, whether it be your spouse or your mother or your father or your counselor or whoever, that you can draw on to say, “Look, I am feeling the pressure and feeling really anxious and upset. I'm nervous about this right now. Can you just listen to me?” And more so than even getting, for me, at least getting answers back from someone was just knowing someone was just going to listen to me and they were going to not necessarily nurture or console me but just give me that hug and say, “You know what, I'm here for you if you need me again” or, you know, “Is there anything I can do to alleviate a little bit of pressure?” Not necessarily that you'd even take ‘em up on it. But just that somebody understands that, not necessarily what you’re going through, but understands that they need to be there for you and that they're willing to be there to be a support. And that, that was huge. I was very lucky to have more than, you know, my spouse. My mother and my father both have been incredible throughout this entire process. (Participant 13) Some mothers (5/16) did wish for support from other HIV-infected women who had gone through this experience. Some felt that not having access to a peer group that they could openly discuss their fears and concerns about their infants and themselves was a gap in services. But if I knew that I was talking to someone who felt the same way about this as I did, then I would feel comfortable talking to them because I don't have to hide anything. I don't have to sugar-coat it or beat around the
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bush or word it in a different way or use a “what if” situation; I can just say “Oh well this is happening to me” because I know the person listening knows exactly what I'm talking about because you're dealing with the same thing as me. (Participant 3)
Fear of disclosure as a barrier to support. Some of the mothers (5/16) voiced a fear of disclosure of their HIV infection because negative reactions could adversely affect their lives and/or the lives of their infants. Therefore, they chose not to access support or services that were available to them. Although I realize I would make some new friends that would probably be much better than my old friends. There's still that fear there. But our number one reason for not saying anything is because of our daughter. My fear is, is that if someone, if people were to know [about her infant's HIV testing] and it was to be out in the open . . . I don't want her to be shunned, her being a completely healthy negative child. (Participant 6) Even though I'm probably missing out on a lot of opportunities that I could probably take advantage of if I were more open with it [HIV infection], you know . . . just probably an abundance of services. But you know I want to live a normal life, so I have to go on with my life like it's normal and do the things on my own. (Participant 15)
Discussion These mothers' statements revealed a complex reaction to their infants' HIV testing process. Having to repeat the cycle of HIV testing created a prolonged period of ambiguity, leading to a roller coaster of feelings of anxiety, stress, and guilt. Adapting to and accepting the process as necessary was enhanced with each negative HIV test result, as was found in previous research on this experience (Shannon, Kennedy, & Humphreys, 2008). One of the most difficult experiences for these mothers was witnessing their infants undergoing phlebotomies. The majority of mothers experienced intense emotional stress, guilt, and, in some instances, negative physical reactions during these procedures. For some mothers, the distress may be associated with their own fear of phlebotomies. For others, it is likely related to the psychological experience of the testing that revealed their own diagnosis with HIV infection (Nelms, 2005). The physical reactions that some mothers in this study experienced have not been described previously and are important for clinicians to consider,
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especially if there is an expectation that mothers will be present during and/or participate in their infants' phlebotomies (e.g., assisting with stabilizing the infant during the procedure). The stress of their infants' ambiguous HIV status may affect the mental health of HIV-infected mothers. Stress, distress, and depression in HIV-infected women have been correlated with dysfunctional maternal–infant interactions at 6 weeks postpartum (Oswalt & Biasini, 2012), and emotional and behavioral problems in uninfected children (Elgar, McGrath, Waschbusch, Stewart, & Curtis, 2004). Although some researchers have reported a prevalence of depressive symptoms in HIV-infected pregnant and postpartum women similar to uninfected women (Bonacquisti, Geller, & Aaron, 2014; Ethier et al., 2002), others have found that HIVinfected women have an increased prevalence and severity of depressive symptoms (Kapetanovic et al., 2009; Oswalt & Biasini, 2012), especially if diagnosed with HIV during pregnancy (Kwalombota, 2002). Moreover, the stress of infant HIV testing may diminish a mother's ability to care for herself. In previous research, a majority of mothers prioritized concerns about their infants' health and other socioeconomic issues over their own health (Butz et al., 1993; D’Auria, Christian, & Miles, 2006; Shannon et al., 2008). Mothers' adherence to maternal ARV regimens may decline by 30–56% during the postpartum period (Bardeguez et al., 2008; Mellins et al., 2008; Murphy et al., 2002). In this study, the mothers' adherence to ARV medications in pregnancy was reportedly 100% but declined to 60% during the testing period of their infants. One mother who was so overwhelmed with the stress of infant testing that she resumed substance abuse until the infant's infection status was confirmed to be negative. If even more rapid methods of newborn HIV infection detection are developed, it will not only benefit the infant by reducing time on prophylactic medications but will decrease the time in which mothers focus on their infants' concerns at the expense of their own healthcare needs. The mothers discussed the importance of reliable support during this time, and as in previous studies (D'Auria et al., 2006; Lazarus, Struthers, & Violair, 2009; Lindau et al., 2006), ongoing communication with and support from clinicians, a close family member, or friend helped them move through moments of feeling particularly vulnerable. Although some stated that talking with a peer would be helpful, others indicated that they were not ready to do so due to concerns about HIV disclosure and the stigma associated with the disease. This is in contrast to the findings of Lazarus et al. (2009), in which HIV-infected mothers sought out support from their social networks to help them cope with their stress. In addition, contrary to other reports (D'Auria et al., 2006; Nelms, 2005; Pittiglio & Hough, 2009), the mothers in this study rarely mentioned spirituality, praying, or seeking religious counsel as coping mechanisms. Some mothers described a guarded approach to emotionally embracing their infants until the infants' health had
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been confirmed. Delayed maternal–-fetal attachment has been observed in women undergoing prenatal genetic screening, even when the test results are in a normal range, and in women with incidental, non-pathologic findings on a prenatal fetal ultrasound (Cristofalo, Pietro, Costigan, Nelson, & Crrino, 2006; Lawson & Turriff-Jonasson, 2006; Rowe, Fisher, & Quinlivan, 2009). This delayed maternal–fetal attachment often resolves once there is conclusive evidence that the fetus is normal (Rowe et al.). Once the mothers in this study had conclusive evidence that their infants were not infected, they were able to emotionally attach to them without hesitancy. The impact on maternal–infant attachment of the process of HIV detection, requiring multiple tests over a period of months, is unlike other newborn screening tests. Although there are some parallels with genetic screening, including the anticipated uncertainty about whether an infant will be affected and potential guilt of transmitting inherited diseases, HIV has unique features, including stigmatization. However, in a recent study on mothers whose infants had cardiac surgery before 3 months of age (Jordan et al., 2014), 23% reported difficulties bonding with their infants and 19% experienced anxiety and worry, suggesting that mothers with infants in an ambiguous state of health are at risk of difficulties with attachment. The mothers in the present study expressed a desire for having a normal life, which for many women includes being a mother. In addition to the well documented challenges faced by most mothers of infants, HIV-infected mothers simultaneously had to live with ambiguity, a complicated medication schedule, and painful procedures to their infants, all stemming from their own HIV status. Of note, their infants' complicated prophylactic ARV medication regimen was never mentioned as an issue. The hope of having a “normal” infant and “normal” mothering and family experience seemed to become real to these women once they had confirmation that their infants were uninfected and would be able to grow up without facing the challenges and stigma of HIV. This is consistent with other evidence of the importance to those with HIV of a life without social isolation due to stigmatization (Giles, Hellard, Lewin, & O'Brien, 2009; Nelms, 2005). Improvements in HIV treatment and longevity made these mothers' experience different from those in earlier studies. In a study also conducted during the infant testing period (D'Auria et al., 2006), but earlier in the HIV epidemic, when HIV mortality was high and ARV treatment was limited, mothers expressed similar concerns for the well-being of their babies, but their main concern was not surviving or staying healthy enough to care for their infants. Many had identified legal guardians to care for their children in anticipation of their death due to HIV. The couple in this study already debating about whether or not to have another child provides a sharp contrast, reflecting advances in treatments resulting in a prolonged life for
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HIV-infected mothers, as well as the integration of HIV as a manageable chronic disease.
Limitations and Strengths Results of this study may not reflect the experiences of other groups of HIV-infected mothers who face this process. The majority of participants were aware of their HIV infection status prior to becoming pregnant. Women who are newly diagnosed during pregnancy or at delivery may have greater anxiety, guilt, and possibly confusion about the process of infant HIV testing. All of the women in this study received specialized and coordinated obstetrical, pediatric, and HIV-specific care at centers where extensive experience and support systems were available to them. HIV-infected women in areas where access to similar resources is limited or non-existent may have different experiences during early motherhood. In contrast to earlier studies of experiences of HIV-infected women, most of whom had acquired the infection through IV drug abuse or working in the sex industry, a strength of this study is documentation of the experiences of women who acquired HIV infection through heterosexual transmission, who constitute the majority of HIV women experiencing pregnancies, adding currency to our understanding of the experiences of HIV- infected mothers during the viral diagnostic testing of their infants.
Clinical Implications The documented desire to feel “normal” suggests that clinicians frame HIV disease as a chronic illness similar to other chronic conditions, which when managed successfully can lead to as normal a life as is possible. Nonetheless, it is important for clinicians to appreciate that the prolonged period of testing to determine an infant's HIV infection status can produce psychological stress with an adverse impact on maternal health. Infant HIV testing begins and continues during a particularly vulnerable point in the postpartum period, a time when maternal postpartum depressive symptoms may begin to surface. Closely monitoring these mothers for psychological symptoms and for relapses of harmful behaviors should be part of routine assessment during pregnancy and the period when infants are undergoing HIV testing. Moreover, given the documented reduction in adherence to maternal ARV medications during this time, it is also essential to ask about and reinforce maternal medication adherence, emphasizing that living a “normal” life is optimally accomplished when a mother remains healthy and able to raise her child to adulthood. Because of the physical reactions, a mother may experience when witnessing their infants' phlebotomies, options should be available for a mother to leave the room or to have someone accompany her for support during these procedures. As some mothers articulated feelings of
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limited attachment toward their infants due to uncertainty, monitoring mothers' interactions with their infants and listening to their concerns may identify those who need more support with transitioning to a parental role. In addition, mothers can be advised that this feeling has been reported by other mothers during infant HIV testing and can resolve over time. Most mothers relied on clinician support to help them cope; therefore, the time necessary to provide information about the process and address mothers' specific concerns should be factored into clinical visits. In some instances, clinicians may be the only source of support for a woman because of her fear of stigma for herself or her child if information about her infection, or the HIV testing of her infant, is disclosed. In addition, knowledge gained in these encounters can contribute to feeling more confident about remaining actively engaged in their own and their infants' care.
Conclusion This study contributes to the understanding of the early postpartum period for mothers with HIV infection by focusing on their experiences, with their infants' HIV virologic diagnostic testing. Maternal psychological and physical reactions specifically associated with witnessing laboratory procedures and perceptions of delayed or tentative maternal attachment have not previously been reported. Findings support previous reports of HIV-infected mothers' attention to their infants' health while sometimes neglecting their own health needs, including adherence to recommended ARV medications. Providing HIV-infected mothers with clinical support and essential information about HIV, adopting a perspective of being as “normal” as possible within the confines of the disease and the testing process, and monitoring their psychological health and interactions with their infants can promote their well-being and facilitate their transition to parenthood.
References Bardeguez, A. D., Lindsey, J. C., Shannon, M., Tuomala, R. E., Cohn, S. E., Smith, E., … Read, J. S. (2008). Adherence to antiretrovirals among US women during and after pregnancy. Journal of Acquired Immune Deficiency Syndromes, 48, 408–417. doi: 10.1097/QAI.0b013e31817bbe80 Blaney, N. T., Fernandez, M. I., Ethier, K. A., Wilson, T. E., Walter, E., & Koenig, L. J. (2004). Psychosocial and behavioral correlates of depression among HIV-infected pregnant women. AIDS Patient Care and STDs, 18, 405–415. doi: 10.1089/ 1087291041518201 Bonacquisti, A., Geller, P. A., & Aaron, E. (2014). Rates and predictors of prenatal depression in women living with and without HIV. AIDS Care, 26, 100–106. doi: 10.1080/09540121.2013.802277 Butz, A. M., Hutton, N., Joyner, M., Vogelhut, J., GreenbergFriedman, D., Schreibeis, D., & Anderson, J. R. (1993). HIVinfected women and infants. Social and health factors impeding
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utilization of health care. The Journal of Nurse-Midwifery, 38, 103–109. Cristofalo, E. A., DiPietro, J. A., Costigan, K. A., Nelson, P., & Crino, J. (2006). Women’s response to fetal choroid plexus cysts detected by prenatal ultrasound. Journal of Perinatology, 26, 215–223. D’Auria, J. P., Christian, B. J., & Miles, M. S. (2006). Being there for my baby: Early responses of HIV-infected mothers with an HIVexposed infant. Journal of Pediatric Health Care, 20, 11–18. doi: 10.1016/j.pedhc.2005.08.008 Elgar, F. J., McGrath, P. J., Waschbusch, D. A., Stewart, S. H., & Curtis, L. J. (2004). Mutual influences on maternal depression and child adjustment problems. Clinical Psychology Review, 24, 441–459. doi: 10.1016/j.cpr.2004.02.002 Ethier, K. A., Ickovics, J. R., Fernandex, M. I., Wilson, T. E., Royce, R. A. & Koenig, L. J. (2002). The Perinatal Guidelines Evaluation Project HIV and Pregnancy Study: Overview and cohort description. Public Health Reports, 117, 137–147. Giles, M. L., Hellard, M. E., Lewin, S. R., & O’Brien, M. L. (2009). The “work” of women when considering and using interventions to reduce mother-to-child transmission (MTCT) of HIV. AIDS Care, 21, 1230–1237. Hunter, L. P., Rychnovsky, J. D., & Yount, S. M. (2009). A selective review of maternal sleep characteristics during the postpartum period. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 38, 60–68. doi: 10.1111/j.1552–6909.2008.00309.x Ingram, D., & Hutchinson, S. A. (1999). HIV-positive mothers and stigma. Health Care for Women International, 20, 93–103. Insana, S. P., Williams, K. B., & Montgomery-Downs, H. E. (2013). Sleep disturbance and neurobehavioral performance among postpartum women. Sleep, 36, 73–81. doi: 10.5665/sleep.2304 Jordan, B., Franich-Ray, C., Albert, N., Anderson, V., Northam, E., Cochrane, A., & Menahem, S. (2014). Early mother-infant relationships after cardiac surgery in infancy. Archives of Disease in Childhood, 99, 641–645. doi: 10.1136/archdischild-2012-303488 Kapetanovic, S., Christensen, S., Karim, R., Lin, F., Mack, W. J., Operskalski, E. … Kovacs, A. (2009). Correlates of perinatal depression in HIV-infected women. AIDS Patient Care and STDs, 23, 101–108. doi: 10.1089/apc.2008.0125 Kwalombota, M. (2002). The effect of pregnancy in HIVinfected women. AIDS Care, 14, 431–433. doi: 10.1080/ 09540120220123829 Lawson, K. L., & Turriff-Jonasson, S. I. (2006). Maternal serum screening and psychosocial attachment to pregnancy. Journal of Psychosomatic Research, 60, 371–378. doi: 10.1016/j. jpsychores.2006.01.010 Lazarus, R., Struthers, H., & Violari, A. (2009). Hopes, fears, knowledge and misunderstandings: Responses of HIV-positive mothers to early knowledge of the status of their baby. AIDS Care, 21, 329–334. doi: 10.1080/09540120802183503 Lindau, S. T., Jerome, J., Miller, K., Monk, E., Garcia, P., & Cohen, M. (2006). Mothers on the margins: Implications for eradicating perinatal HIV. Social Science & Medicine, 62, 59–69. doi: 10.1016/j.socscimed.2005.05.012 Mellins, C. A., Chu, C., Malee, K., Allison, S., Smith, R., Harris, L., … Larussa, P. (2008). Adherence to antiretroviral treatment among pregnant and postpartum HIV-infected women. AIDS Care, 20, 958–968. doi: 10.1080/09540120701767208
HIV-INFECTED MOTHERS' EXPERIENCES DURING THEIR INFANTS' HIV TESTING/ SHANNON
Murphy, D. A., Austin, E. L., & Greenwell, L. (2007). Correlates of HIV-related stigma among HIV-positive mothers and their uninfected adolescent children. Women and Health, 44, 19–42. doi: 10.1300/J013v44n03_02 Murphy, D. A., Greenwell, L., & Hoffman, D. (2002). Factors associated with antiretroviral adherence among HIV-infected women and children. Women and Health, 36, 97–111. doi: 10.1300/ J013v36n01_07 Nelms, T. P. (2005). Burden: The phenomenon of mothering with HIV. Journal of the Association of Nurses in AIDS Care, 16, 3–13. doi: 10.1016/j.jana.2005.05.001 Otchet, F., Carey, M. S., & Adam, L. (1999). General health and psychological symptom status in pregnancy and the puerperium: What is normal. Obstetrics & Gynecology, 94, 935–941.
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Panel on Treatment of HIV-Infected Pregnant Women and Prevention of Perinatal Transmission. (2014). Recommendations for use of antiretroviral drugs in pregnant HIV-1-infected women for maternal health and interventions to reduce perinatal HIV transmission in the United States. Retrieved from http://aidsinfo.nih.gov/contentfiles/lvguidelines/perinatalgl.pdf. Pittiglio, L., & Hough, E. (2009). Coping with HIV: Perspectives of mothers. Journal of the Association of Nurses in AIDS Care, 20, 184–192. doi: 10.1016/j.jana.2009.02.001 Rowe, H., Fisher, J., & Quinlivan, J. (2009). Women who are well informed about prenatal genetic screening delay emotional attachment to their fetus. Journal of Psychosomatic Obstetrics & Gynecology, 30, 34–41. doi: 10.1080/01674820802292130
Oswalt, K. L., & Biasini, F. J. (2012). Characteristics of HIV-infected mothers associated with increased risk of poor mother-infant interactions and infant outcomes. Journal of Pediatric Health Care, 26, 83–91. doi: 10.1016/j.pedhc.2010.06.014
Rubin, L. H., Cook, J. A., Grey, D. D., Weber, K., Wells, C., Golub, E. T., … Maki, P. M. (2011). Perinatal depressive symptoms in HIV-infected versus HIV-uninfected women: A prospective study from preconception to postpartum. Journal of Women’s Health, 20, 1287–1295. doi: 10.1089/jwh.2010.2485
Panel on Antiretroviral Therapy and Medical Management of HIVInfected Children. (2014). Guidelines for the use of antiretroviral agents in pediatric HIV infection. Retrieved from http://aidsinfo. nih.gov/contentfiles/lvguidelines/pediatricguidelines.pdf.
Shannon, M., Kennedy, H. P., & Humphreys, J. C. (2008). HIVinfected mothers’ foci of concern during the viral testing of their infants. Journal of the Association of Nurses in AIDS Care, 19, 114–126. doi: 10.1016/j.jana.2007.10.004
Acknowledgments This research was funded in part by the National Institute of Child Health and Human Development Extramural Associates Research Development Award (1G11HD054969) and a National Institute of Nursing Research National Research Service Award (F31-NR008181). The author thanks Dr. Janice Humphreys for sharing her expertise in qualitative analysis, Mr. Greg Pantell for his meticulous and timely transcription of the interviews, and Dr. Robert Pantell for his review of the manuscript prior to its submission for publication.
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