Based on the search strategy protocols, a total of 4,198 potential articles were identified through the systematic literature searches and reduced to a sample of 8 qualitative articles were included for analysis (see Table 2). Each of the articles in the sample met the requirement for inclusion using the CASP checklist while one article[68], was assessed as weak in theoretical and methodological congruence with the JBI checklist. The articles represented 1,333 participants with data from 10 countries with about half the studies principally from urban areas of the United States. From the data, 45 subthemes emerged, and these were organized into 15 themes. These themes were then grouped into three meta-themes to explain the factors influencing the reproductive decision-making of WLH: 1) Shattered identity, 2) Barriers, inequities, and misinformation, 3) Coping, Resiliency, and Support (see Table 3). When women learn about their HIV positive diagnosis, their meaning in life is changed, and their identity is altered. Yet, motherhood remains one of their main goals in in life. Reproductive decision-making is a complex process influenced by many factors. The facilitators help WLH cope with their new situation to become more resilient, while others act as barriers that make their situation difficult to manage.
Table 2
Summary of Included Studies
AUTHOR/S YEAR | SAMPLE / SETTING | METHODOLOGY AND METHODS | MAIN FINDINGS |
Barnes & Murphy (2009). | 80 WLH, childbearing age, in Oakland, Chicago and Illinois (United States). | Grounded theory. Data collection: Interviews (semi-structured). Dates: 1995 to 2000. | WLH reproductive decisions are based on their judgment of the relative weight of positive aspects of motherhood versus the often-negative pressures of social and public opinion. |
Barnes (2013). | 36 WLH, mothers, from Oakland and Rochester (United States). | Grounded theory. Data collection: Interviews (in-depth). Dates: 2005 to 2009. | WLH who had living children experienced longevity from fulfilling dreams of seeing their children grow up despite the unique challenges from their HIV status. The longevity offered possibilities for regaining contact with children who had been given up for adoption, were or had been in foster care, or lived with family members. WLH felt living longer offered more possibilities of becoming a mother with pregnancy, but opportunities were complicated with reconciling past reproductive experiences and poor choices. |
Campero et al. (2010). | Heterosexual 20 WLH and 20 men > 18 years old in four states of Mexico. | Grounded theory. Data collection: Interviews (in-depth). Dates: 2003 to 2004. | Limited support and counseling is a barrier to exercising sexual and reproductive rights of participants, especially women. Principal issues included feeling frustrated and confused, fear of re-infection, limited information, lack of power to negotiate condom use, social stigma and discrimination, and limited access to services and technologies. |
Carlsson-Lalloo et al. (2016). | 18 qualitative studies with a total of 588 WLH interviewed from wealthier countries outside the Asian and African continents. | Meta-ethnography. Data collection: Interview and observational data. Dates: 1997 to 2012. Locations: USA (11), Canada (2), UK (2), Australia (1), Ireland (1), and Brazil (1). Two systematic searches (sexuality and reproduction) in CINAHL and MEDLINE. Articles assessed with Critical Appraisal Skills Programme. | HIV infection is a burden in relation to sexuality and reproduction. The weight of the burden can be heavier or lighter. Conditions making the HIV burden heavier included: HIV as a barrier, feelings of fear and loss, whereas motherhood, spiritual beliefs, and supportive relationships make the HIV burden lighter. |
Cuca & Rose (2016). | 20 WLH, > 18 years old, diagnosed at least 1 year prior to study; pregnant at least once since their HIV diagnosis living in San Francisco (United States). | Grounded theory and situational analysis. Data collection: Interviews (in-depth) and observations. Dates: 2009, October to 2010, February; and 2012, October and 2013, February. | Reproductive choices are made in situations of chaos, instability, and stigmatization. For some women, providers are sources of stigma. Participants demonstrated resistance to stigmatization, through building supportive communities and developing trusting relationships with HIV providers. |
Giles et al. (2009). | 45 HIV-infected women ages 18–44 living in Melbourne, Australia. | Content analysis. Data collection: Interviews (semi-structured questions). Dates: 2005 to 2006. | The 15 women who had their children after their HIV diagnosis engaged in significant work including surveillance and safety work to minimize stigma and infection, information work to inform decisions and actions, accounting work to calculate risk and benefit, hope and worry work concerning a child’s infection status and impact of interventions, work to redefine an acceptable maternal identity, work to prepare an alternative story to counter the disclosure effect of the intervention and emotional work to reconcile guilt when considering these interventions. |
Jean et al. (2016). | 19 HIV-infected sexually active women ages 18–45 living in Southern Florida, (United States). | Collaborative with thematic analysis. Data collection: Interviews (open-ended questions). Date: Unknown. | Decisions to conceive are influenced by women and partners; knowledge and use of safer conception practices are low. Discussion and support from partners, family and providers is limited and diminished by stigma and nondisclosure. |
Keegan et al. (2005). | 21 WLH ages 22–54 living in the United Kingdom | Interpretative phenomenological analysis. Data collection: Interviews (in depth and semi-structured). Dates: Unknown. | Themes identified included: (1) difficulties with sexual functioning, specifically lowered libido and enjoyment and reduced intimacy; (2) barriers to forming new relationships: fears of HIV disclosure, fears of infecting partners; (3) coping strategies: included relationship avoidance and having casual partners to avoid disclosure; (4) safer sex: personal dislike of condoms, lack of control, lack of suitable alternatives. Women experienced a range of sexual and relationship difficulties that appear to be relatively unchanged despite the advent of HAART. |
Kelly et al. (2011). | 6 women and 4 men living with HIV with a reproductive trajectory in Northern Ireland. | Qualitative narrative approach. Data collection: Interviews (in-depth) Dates: 2008 to 2009. | Personal priorities and meanings are central to the negotiation of risk in sexual relationships, in which biomedical understandings of are balanced against a broader set of social expectations and desires. The need to re-negotiate a loving relationship and reproductive desires along with a desire for physical pleasure, a dislike of condoms within stable relationships and a desire to conceive without medical intervention were all given as justifications for unprotected sex in order to conceive within the context of sero-different relationship. Religious faith help WLH to embrace the uncertainties of reproduction in the context of HIV. |
Kelly et al. (2014). | 10 women and 5 men living with HIV, different stages of disease, during reproductive trajectory in Ireland. | Qualitative narrative approach. Data collection: Interviews (in-depth). Dates: 2007 to 2010. | HIV positive women desire for children reflects the cultural norm of motherhood as a natural desire and a social expectation. Pregnancy signifies normality and the natural order to completing a committed relationship. The decision to become pregnant is taken against a backdrop of increased confidence in the role of treatment in lengthening lives and protecting babies from infection. Love, commitment, and desire to conceive without medical interventions, alongside the added security of an undetectable viral load, significantly impact on women’s decisions to have unprotected sex to conceive. HIV positive women are more hesitant than men to take the risk of unprotected sex with their negative partner. Achieving an undetectable viral load to protect their children from HIV infection became a major goal. Stigma continues to dominate the symbolic significance of HIV. |
Kirshenbaum et al. (2004). | 56 women, ages 20–55 living in Los Angeles, Milwaukee, New York, and San Francisco (United States) | Grounded theory. Data collection: Interviews (in depth). Dates: 1998, December to 1999, August. | Risk of vertical transmission was perceived by WLH but overestimated. Motherhood is desired, but decision-making is impacted by beliefs about vertical transmission, strategies, stigma, religious values, attitudes of partners and health care providers, and the impact of the mother’s health and longevity on the child. When women do not want children after their diagnosis, vertical transmission risk is the main reason (but most of these women already had children). Those who become pregnant or desired children after diagnosis were more confident in the risk reduction strategies and often do not already have children. |
Leyva-Moral et al., (2017). | 12 qualitative studies, with 50 women, published in peer-reviewed journals conducted in Brazil and the New York (United States). | Systematic review of 12 databases with meta-synthesis. Dates: 2005 to 2015. Articles assessed with Critical Appraisal Skills Programme. | For pregnant WLH, pregnancy evolves as a mediated experience of commitment and dedication. The vital life experience of pregnancy is defined as an interplay of emotions, coping strategies, and feelings of satisfaction. Pregnancy in WLH is experienced and impacted by societal beliefs, as the women focuses all their efforts to take care of themselves and their babies. |
Leyva-Moral et al. (2018). | 42 research papers, 16 with qualitative data about reproductive decisions of WLH published in peer-reviewed journals, (14 US, 1 UK, 1 Ireland). | Systematic review of qualitative and quantitative studies. Dates: 1985 to 2016. Articles assessed with Critical Appraisal Skills Programme. | Socio-demographic, health status and pregnancy, religion and spirituality, beliefs and attitudes about antiretroviral therapy, clinicians, significant others, motherhood and fulfillment, fear of perinatal infection and infection of partner(s), birth control and pregnancy management are the factors that influence the reproductive decision-making process in WLH. |
Sanders, (2008). | 9 WLH mothers ages 34–53 living in New York (United States). | Phenomenology. Data collection: Informant interviews. Dates: 2006. | The experience of pregnancy for a woman with HIV is one fraught with isolation, anxiety, and distrust, but it is also one of hope for the normalcy that motherhood may bring. |
Sanders, (2009). | 9 WLH mothers ages 34–53 living in New York (United States). | Descriptive qualitative. Data collection: Secondary data analysis to explore the lived experience of pregnancy after diagnosis with HIV (thematic analysis). Dates: 2006. | Three themes: (a) unprotected sexual relations with the intent to become pregnant, (b) shifting responsibility for condom use as the relationship progressed, and (c) insufficient knowledge of how to reduce partner transmission risk in relation to childbearing. Participants were knowledgeable about the means to minimize transmission to the fetus. |
Siegel et al., (2006). | 284 WLH ages 20–45 living in New York (United States). | Content analysis. Data collection: Focused interviews of WLH. Dates: 146 interviews from 1994, October to 1996, November (prior to the advent of HAART regimens) and 138 interviews from March 2000 to April 2003 (after widespread availability of HAART). | Women in general reported a decreased sexual activity, a loss of sexual interest, and a diminished sense of sexual attractiveness following their HIV infection. The reasons for why they had discontinued sexual activity or were no longer interested in sex, included anxiety about HIV transmission, a loss of freedom and spontaneity during sex, fears of emotional hurt, not wanting the hassle of sexual relationships, a loss of sexual interest, and a diminished sense of sexual attractiveness. The types of changes in their sexuality did not differ between women in the pre-HAART and HAART eras. |
Walulu, & Gill (2011). | 15 WLH, mothers, living in the Midwest (United States), at least 18 years old, with at least one child living at home. | Grounded theory. Data collection: Interviews (in-depth). Dates: Unknown. | The core category is Living for My Children, which involves five areas: Knowing My Diagnosis, Living with HIV, Taking Care of Myself, Seeking Support, and Being There for My Child |
Wesley et al., (2000). | 25 WLH, mothers, at least four months postpartum living in New Jersey (United States). | Content analysis. Data collection: Interviews (semi structured) based on Fishbein's Theory of Reasoned Action. Dates: Unknown. | Motherhood is viewed as a joy and as a means of meeting unmet needs but there is a concern about children's well-being. HIV infection has a minor role in HIV-positive women's lives. |
Abbreviations: WLH = Women living with HIV |
Table 3
Meta-Themes, Themes, and Subthemes
META-THEMES | THEMES | SUB-THEMES |
Shattered Identity | Womanhood | I’m shocked |
I don’t feel like a woman anymore |
Permanence of HIV |
Loss of normality |
Broken plans |
Reduced sexual desire |
Motherhood | Becoming mothers as a route to normality |
Missed mothering opportunities |
Motherhood as a social responsibility |
Motherhood as a personal desire (value & identity) |
Barriers, Inequities, & Information | Institutional barriers | External barriers for accessing care |
Clinician barriers | Negative support from healthcare providers |
They never asked me if I want to have a baby |
Coercion and concealment |
Inadequate information | Need for information |
Weighing the different options |
Individual barriers | Knowing about HIV |
Knowing about conception methods |
Incorrect beliefs about HIV and pregnancy |
Uncertainty and fears | Fear of transmission |
Fear of birth defects |
Fear of leaving children alone |
Guilt |
Family barriers | Lack of familial support |
HIV-related stigma | Stigmatizing and stereotyping |
Self-isolating and internalizing stigma |
Fear to disclose, will be rejected |
Gender-based inequalities | I just want to be loved |
Unequal power in relationships |
Socioeconomic barriers | Unstable situation |
Coping, Resilience, & Support | Self-care and for caring others | Treatment adherence |
Changes in sexuality: protecting others from HIV |
Negotiating sex |
Family planning | Planned pregnancy |
Accidental and passive pregnancy |
Avoiding medical recommendations |
Child gets positive because destiny |
Creating empowering environments |
Humanized healthcare providers |
Partner support |
Hope | Medical improvement as a hope |
Motherhood is a hope and being a mother is reason to keep fighting HIV |
A new life: second opportunity, another chance |
Personal Choices |
Protection of higher power / spiritual forces |
Shattered Identity
WLH has a shattered identity, broken into two pieces: Womanhood and motherhood. When they learned of their positive status, they were shocked and devastated, and they no longer felt like a woman [35, 69]. They described how HIV assaulted their bodies; stole their sense of beauty, and left the perception of dirtiness.[35] HIV was a barrier present everywhere and all the time.[35, 68, 69]
“Ah, it’s just always in the bedroom, HIV. It’s always there.”[68]
Sexual and reproductive decisions were modified; their desire for intimacy reduced, sexual life changed, and breastfeeding prohibited.[70] They feared disclosing their HIV status to intimate partners, family, and friends as they lost their sense of normality.[35] Their life plans were broken when HIV unexpectedly appeared.[35, 71] Their identity was subjected to self-damage that required interventions to redefine themselves. However, pregnancy was a route to being normal and a way to feel complete as a woman.[35, 70, 72]
“It [pregnancy] is sort of like a completion of myself as a woman.”[72]
Childbirth is one of the most important social identities for women. [8, 16, 35, 73] WLH felt they were recognized by their community when had a child [74, 75] as motherhood is a cultural norm. The phenomena was therefore culturally constructed.[8, 73, 74]
“I just want one. I don’t want a whole house full… I just want one baby, something that’s me, a part of me. That’s something that I can develop and it’s still great too.”[73]
Some WLH felt pushed by their families and others to become mothers.[76] Many women reported losing their children to adoption, foster care, or placement with family members due to acute illnesses, chronic diseases, and/or criminal problems such as drug abuse. These broken mothering opportunities resulted in intense guilt and emotional pain. Consequently, WLH were psychologically harmed and their identity permanently damaged.[16, 77]
“When I was twenty-six, and I’m now forty-four, I didn’t see my life going that far, so I would have made different choices. I think my main thing would have been my choice of having children. I was caught in the middle of the epidemic then. I regretted not having that child. And, you know, as life went on, I still regret it.”[77]
Barriers, Inequities, and Misinformation
When making reproductive decisions, WLH encountered barriers to accessing health services[73], including difficulty obtaining appointments, lengthy wait times at appointments, problems with insurance coverage, inadequate transportation, and issues related to immigration status. Some women accessed services at new clinics with unfamiliar clinicians that resulted in uncomfortable feelings.[73]
"When you have certain insurances, it doesn’t cover the places you want to go where you feel comfortable. You have to go outside and go to another person you don’t even have a background on. With my oldest all my prenatal care was at Hospital X; with my youngest I had a private doctor. It’s not always easy."[73]
WLH felt clinicians were not supportive, reporting HIV-related stigma.[16, 35, 70, 71, 73, 78] They felt their physicians were not helpful and tried to discourage them from pregnancy due to their HIV positive status.[75] The physicians never ask them about their desire to have children.[75] As a result they felt repressed, as their right to decide was coerced.[76, 78]
"The people had pretty much brainwashed me. .. they just reared into me, telling me. .. “Right now it’s not a good time. . ., you ain’t got a place to live, you ain’t got no food, you ain’t got no job, you ain’t got this, you ain’t got that.” So, I took a look at all that and just decided to have an abortion … [I]t hurt, you know, because I wanted to keep it but I had to take a look at the situation and say, oh okay, that, that was right, yeah, okay. That’s true, though, but let me make that decision, you know, it was just like a rushed thing and. .. and I said okay, I’ll have an abortion, I can’t do anything else."[78]
WLH wanted more information about contraception methods and approaches to safe sex. They want to learn about their disease, including discussions with clinicians; something they were unable to find in the health system.[35, 75, 76, 79]
“I look for things that are safe 100%. There have not been recorded cases of anyone becoming infected (in oral sex) so I thought that’s 100% safe. So like a month later I was reading another one of these small leaflets and it says although the risk is small there is some risk and I started to become a bit paranoid.”[79]
Their general knowledge about HIV, varied; however, WLH commonly believed they cannot be mothers. They had the wrong beliefs about the impact of HIV on their ability to become pregnant.[69, 73, 75]
"Like most women, I always wanted to have a baby, but thought it wasn’t an option anymore when I was diagnosed with HIV."[75]
In terms becoming pregnant, WLH feared the risk of transmission to their child or partner, worried about possible health complications, and anticipated adverse effects from HAART.[8, 16, 70, 71, 75, 76] Yet, they still wanted to become pregnant and give birth as naturally as possible. Although some WLH understood the transmission risk was low, they remained fearful and worried.[8, 16, 70–72, 75, 76]
"My other fear is that my baby will come out positive.”[72]
In contrast, other women considered HIV to be a death sentence as they considered the psychological impact of their health and their longevity for their children when making decisions about pregnancy.[8, 16, 35, 69, 71, 72]
“Am I going to get sick? Am I going to die, and the baby is going to live? I think about all of this.” [72]
WLH also confronted overwhelming guilt about their HIV negative partner, past mistakes such as drug abuse, or previous decisions to give up their children for adoption.[8, 16, 35, 71, 77] Yet again, WLH expressed their desire to change the past by becoming good mothers.
“My last daughter was also born tox-positive for cocaine... and I want to change that... I want to make sure it doesn’t happen again.”[71]
Generally, WLH did not feel supported by family members as they did not want to hear about their pregnancy. As family members assumed they cannot have babies, the WLH experienced stigmatizing behaviors and comments.[8, 16, 73, 78, 80]
“My mom told me to erase it out of my head... And it was always the same thing: I was selfish.”[78].
This stigma was also present in interactions with partners and clinicians.[8, 16, 35, 69, 71, 73, 75, 77, 78] As internalized stigma developed, WLH self-isolated as they feared disclosing their HIV status even to seek advice from clinicians about reproductive decisions.[78] Fear of rejection made WLH especially reluctant to disclose their HIV status to partners and friends when speaking about pregnancy.[8, 35, 69, 73, 75–77]
"Stigma …makes that person not want to talk about it [pregnancy]. So you have already labeled me, you already said how you feel about it. If we are talking, and you already said something bad about someone who has the virus -- why would I open up to you? You’re going to talk about me. And see my feelings are going to get hurt.”[73]
WLH want to be loved and to have an intimate partner.[35] But occasionally their decisions were coerced by men, who forced WLH to have unprotected sex or to become pregnant.[35, 73] When men knew they were HIV positive or when they became pregnant, the relationship was disrupted. In these cases, some woman felt abandoned or, on the contrary, others had subsequent unwanted pregnancies.[35]
"I was always the one pushing him to use condoms, and he didn’t want to. Eventually when we were living together, I just stopped. It’s not always going to be my responsibility to push that."[80]
Finally, WLH sometimes experienced homelessness, poverty, domestic violence, drug abuse, and other marginalizing situations. Instability in their lives made reproductive decisions difficult, including whether or not to continue with unplanned pregnancies.[71, 78] Some women believed having a child without the resources to create a stable family environment was irresponsible.[71]
“It’s not an irresponsible thing to have a child. It’s an irresponsible thing to have a child without a father, without a decent income, without a place to live and without the ability to take care of this child…while dealing with your own stuff.”[71]
Coping, Resiliency, and Support
Sexuality and reproduction overlap with love, intimacy, and commitment but all are disturbed by HIV. As the WLH did not want to harm others by transmitting their HIV, they either searched for approaches for safe sex or chose celibacy.[35] WLH reported barriers for contraceptives such as cost and rejection by their partner.[74] The women needed strategies to negotiate safe sex.[35, 74] This process was described as passive negotiation in studies.[35, 79]
“I just told them it was because you don’t know where I come from, I don’t know where you come from, so it is good to be careful and at the same time I don’t want to get pregnant.”[79]
WLH considered planning for pregnancy necessary to protect their health, as well as their partner, prior to attempting to conceive.[73] Nonetheless, some women believed reproductive decisions were passive plans, even accidental situations; and they needed to assume responsibility for the consequences.[71, 73] Some WLH reported lacking confidence in HAART to reduce the risk of mother-to-child transmission.[76] as they believed that if the child gets infected this is destiny.[71]
“It’s not really a planning thing, they just talk about it if they want to have a baby, and if it happens then it happens.”[73]
Other WLH preferred to conceive without medical intervention so they engaged in unprotected sex. For these women, love and commitment with their partners was more important than the risk, as childbirth should not be medicalized.[73, 75]
“When you find a guy and you feel comfortable with them and they accept what is going on with you, you cannot use condoms, even though you know you can get re-infected…when you are blinded by that person you take risks, I take risks, and say ain’t nothing going to happen to me, ain’t nothing happened to me so far so what the hell.”[73]
Sharing their status with others was a coping strategy identified by WLH to accept their diagnosis. Creating empowering environments such as support groups for people to understand their situation appeared to be helpful.[78]
“Surrounding myself around people that’s HIV… It helps me a lot, it chills me down.”[78]
However, intimate partners were the most important person for reproductive decision-making as they helped WLH feel self-confidence as they engaged in their decision-making process.[70, 73, 75] In some cases, WLH reported their relationships were stronger following HIV diagnosis due to the increased partner support.[70]
"He’s [partner] with me, he’s got my back 110%. So anything I decide I want to do he supports me -- there’s not a lot of men that do that. When I met and let him know what my status was, he told me “and what?” He didn’t see my status he saw that person that I was, that I am, he knows that I am a good person and that’s what."[73]
Despite the challenges, WLH sought advice when considering pregnancy as they wanted to make their own good decision. They were not discouraged from wanting children by negative input from family members or their clinicians.[73]
"I really don’t care for…what family has to say, because …as a grown individual you have to be grown enough… to make your own decisions."[73]
However, WLH shared their decision with God as they believed their situation resulted from the plan God had for them.[8, 16, 35, 69, 71, 77] God plays an essential role in reproductive decision-making as ‘He’ will protect their children, so the final decision is shared with ‘Him.’[69] WLH felt relief because they could depend on spiritual forces, including greater protectiveness from God's power.
"But basically, it’s a decision I made with my higher power. I just ask God to show me what to do."[16]
When WLH were aware of medical advancements related to pregnancy, the possibility of becoming a mother was real.[75] Mothering gave them a reason to continue their fight against HIV as they wanted to live, and they could be stronger.[8, 16, 35, 69] Moreover, some WLH felt they received a second chance, as they has an opportunity to correct their past parenting mistakes and to catch up on their missed mothering opportunities.[16, 77]
"However, over the years, with improvements in treatment and people with HIV living longer, it started to feel possible. The doctors told us that the risk of the baby having HIV has gone down to 1%."[75]