Huertas‑Zurriaga et al. Reprod Health (2021) 18:148 https://doi.org/10.1186/s12978-021-01197-6 RESEARCH Open Access Motherhood and decision‑making among women living with HIV in developed countries: a systematic review with qualitative research synthesis Maternidad y toma de decisiones en mujeres que viven con el VIH en países desarrollados: una revisión sistemática con síntesis de investigación cualitativa Ariadna Huertas‑Zurriaga1,2 , Patrick A. Palmieri3,4,5,6* , Joan E. Edwards5,7 , Sandra K. Cesario5,7 , Sergio Alonso‑Fernandez8 , Lidia Pardell‑Dominguez2,6,9 , Karen A. Dominguez‑Cancino6,10,11 and Juan M. Leyva‑Moral2,6,9 Abstract Background: Women living with HIV (WLH) lack evidence-based information about reproductive options while man‑ aging pressures from family, clinicians, and communities to give up the idea of having children. As the reproduction intentions of WLH are not well understood, stigmatizing behaviors force them to hide their disease to avoid rejection by their family, partner, and social networks. Compliance with social norms, fear of stigma, and discrimination influ‑ ence their experience. Current research is individual qualitative studies lacking the synthesis perspective necessary to guide intervention development. The purpose of this study was to synthesize the evidence to explain the reproduc‑ tive decision-making process for WLH in developed countries. Methods: A systematic review with qualitative research synthesis was conducted through searches in 10 elec‑ tronic databases (CINAHL, EMBASE, MEDLINE, Scopus, Social Science Citation Index, Web of Science, Google Scholar, Cuidatge, Cuiden Enfispo, and SciELO). Studies published in journals from 1995 to 2019 with qualitative data about reproductive decision-making among WLH in developed countries were eligible for inclusion. Developed country was *Correspondence: patrick.palmieri@jbisa.org; patrick.palmieri@uwiener.edu.pe 3 South American Center for Qualitative Research, Universidad Norbert Wiener, Av. Arequipa 444, Torre 2, Piso 4, Lima 15046, Perú Full list of author information is available at the end of the article © The Author(s) 2021. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://​creat​iveco​mmons.​org/​licen​ses/​by/4.​0/. The Creative Commons Public Domain Dedication waiver (http://​creat​iveco​ mmons.​org/​publi​cdoma​in/​zero/1.​0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Huertas‑Zurriaga et al. Reprod Health (2021) 18:148 Page 2 of 21 operationalized by membership in the OECD for comparative conditions of social wellbeing and economic stability. The CASP and JBI checklists for qualitative research were used to assess study quality and methodological integrity. Thematic analysis and qualitative meta-summary techniques were used for the synthesis. Results: Twenty studies from 12 developed countries were included in the synthesis. Findings were organized into 3 meta-themes from 15 themes and 45 subthemes, including: (1) Shattered identity, (2) Barriers, inequities, and misinfor‑ mation, (3) Coping, resiliency, and support. Reproductive decision-making was perceived as a complex process influ‑ enced by facilitators and barriers. The facilitators helped WLH cope with their new situation to become more resilient, while the barriers made their situation more difficult to manage. Conclusion: WLH encounter reproductive decision-making with knowledge deficits and limited social support. An integrated approach to holistic care with comprehensive multidisciplinary counseling is needed to support WLH. Clinicians could benefit from professional development to learn how to be authentically present for WLH, including engaging in conversations, demonstrating compassion, and understanding situations. Evidence-based clinical prac‑ tice guidelines need to be tailored for the family planning and sexual health needs of WLH. Keywords: AIDS, HIV, Decision-making, Pregnancy, Reproductive health, Women Resumen Antecedentes: Las mujeres que viven con el VIH (MVV) carecen de información basada en evidencias sobre las opciones reproductivas mientras son presionadas por la familia, los profesionales de la salud y los miembros de la comunidad para renunciar a la idea de tener hijos. Como las intenciones reproductivas de las MVV no son compren‑ didas, las conductas estigmatizantes las obligan a ocultar su enfermedad para evitar el rechazo de su familia, pareja y grupos sociales. El cumplimiento de las normas sociales, el miedo al estigma y la discriminación influyen en su experi‑ encia. La presente investigación está compuesta por estudios cualitativos que de forma individual carecen de la per‑ spectiva de síntesis necesaria para guiar el desarrollo de las intervenciones. El propósito de este estudio fue sintetizar la evidencia para explicar el proceso de toma de decisiones reproductivas para las MVV en los países desarrollados. Métodos: Se realizó una revisión sistemática con síntesis de investigación cualitativa mediante búsquedas en 10 bases de datos electrónicas (CINAHL, EMBASE, MEDLINE, Scopus, Social Science Citation Index, Web of Science, Google Scholar, Cuidatge, Cuiden Enfispo y SciELO). Los estudios publicados en revistas de entre 1995 y 2019 que contuvieran datos cualitativos sobre la toma de decisiones reproductivas entre las MVV en países desarrollados fueron elegibles para su inclusión. Se consideraron países desarrollados aquellos que pertenecieran a la OCDE con el objetivo de comparar condiciones de bienestar social y estabilidad económica. Las listas de verificación CASP y JBI para la investigación cualitativa se utilizaron para evaluar la calidad del estudio y la integridad metodológica. Para la síntesis se utilizaron técnicas de análisis temático y metanálisis cualitativo. Resultados: En la síntesis se incluyeron veinte estudios de 12 países desarrollados. Los hallazgos se organizaron en 3 metatemas de 15 temas y 45 subtemas, incluyendo: (1) Identidad fragmentada, (2) Barreras, inequidades y desin‑ formación, (3) Afrontamiento, resiliencia y apoyo. La toma de decisiones reproductivas se percibió como un proceso complejo influenciado por factores facilitadores y barrera. Los facilitadores ayudaron a las MVV a afrontar su nueva realidad para volverse más resilientes, mientras que las barreras hicieron que su situación fuera más difícil de manejar. Conclusión: Las MVV enfrentan la toma de decisiones reproductivas con déficits de conocimiento y apoyo social lim‑ itado. Es necesario adoptar un enfoque holístico de atención integral con asesoramiento multidisciplinario para acom‑ pañar a las MVV. Los clínicos podrían beneficiarse del desarrollo profesional para aprender a estar verdaderamente presentes para las MVV, participando en reflexiones, demostrando compasión y comprendiendo sus situaciones. Las guías de práctica clínica basadas en la evidencia deben adaptarse a las necesidades de planificación familiar y salud sexual y reproductiva de las MVV. Plain Language Summary Women living with HIV can become pregnant and deliver a healthy baby due to advances in medicine. Being a mother is an important role that gives meaning to life for most women. For women living with HIV thinking about having a baby is difficult because HIV complicates many areas of daily living. When women living with HIV try to speak with physicians and nurses about having a baby, they often do not feel supported and report feeling stigmatized. This review of the scientific literature summarizes the experiences of women living with HIV in developed countries as Huertas‑Zurriaga et al. Reprod Health (2021) 18:148 Page 3 of 21 they considered having a baby. Ten electronic databases were searched for studies published between 1995 and 2019 reporting interviews with women living with HIV about becoming pregnant and having a baby. From the 4519 articles identified, 20 were included for review with 1395 participants from 12 developed countries. After abstracting and analyzing the interviews, three themes were developed to summarize the process described by women living with HIV as they considered pregnancy and the possibility of having a baby, including: (1) Shattered identity, (2) Barriers, inequities, and misinformation, and (3) Coping, resiliency, and support. When women living with HIV consider having a baby, they need to feel comfortable and safe speaking with physicians and nurses about family planning. They also need more support from their partner, as well as family and friends. Strategies need to be implemented to improve the family planning process for women living with HIV, including education health care providers about speaking to women about pregnancy and having a healthy baby. Palabras clave: SIDA, VIH, Toma de decisiones, Embarazo, Salud reproductiva, Mujeres Introduction developed countries reported a pregnancy since their Globally there are nearly 40 million people living with diagnosis [11]. Despite significant advancements in med- HIV, more than half are women [1]. In 2018, 82% of ical technology and improvements in clinical practice, pregnant women living with HIV (WLH) had access reproductive decision-making continues to be guided by to antiretroviral treatment to prevent mother-to-child historical perspectives and outdated evidence. transmission, with higher rates in developed countries [2]. The wider treatment coverage and improved adher- ence among WLH has rapidly reduced AIDS-related Rational for review deaths among women [3]. Increased access to highly WLH lack evidence-based information about reproduc- active anti-retroviral therapy (HAART) shifted HIV from tive options while managing pressures from family, cli- an acute illness to a chronic disease [4] for women in nicians, and communities to give up the idea of having terms of life expectancy, quality of life, and the opportu- children [19, 21]. Since reproduction intentions of WLH nity for motherhood [5–7] are not well understood [22], stigmatizing behaviors force Motherhood is an important role that gives mean- women to hide their disease in order to avoid rejection by ing to life for many women; however, decisions about their family, partner, and social networks [8]. Compliance pregnancy and childbearing are often complex as HIV with social norms, fear of stigma, and discrimination impacts many aspects of daily living [8]. The factors influ- influence their experiences and guide their behaviors [23] encing reproductive decision-making include concerns Misinformation and prejudice continue in clinical about the baby being born with HIV and the longevity practice [24] as WLH do not feel supported by their cli- of life for the mother [9, 10]. Pregnancy with HIV brings nicians. They report discrimination and stigma in some increased risk for complications [5, 8] including mater- cases [25]; with the resulting fear and anxiety negatively nal infection and adverse perinatal outcomes [9, 11, 12]. impacting their relationships with clinicians and their Following the introduction of HAART, however, mother- confidence in the health system [26]. WLH require com- to-child transmission was reduced to less than 1% in prehensive evidence-based care to safely fulfill their developed countries [13]. The knowledge transfer of this decisions about motherhood, whether this involves pre- evidence into clinical practice, within communities, and venting [9] or safely advancing a pregnancy [27]. throughout the general public has been slow [14]. Compared to developed countries, longstanding varia- Although cesarean section was the recommended tions in human rights, socioeconomic conditions, public mode for delivery prior to HAART [15, 16] European policies, and health systems in developing countries dif- guidelines now promote vaginal delivery [17] as mater- ferentially restrict women from accessing quality health nal viral load was identified as the most significant risk services, achieving sexual health, and making reproduc- factor for perinatal HIV infection. Despite favorable con- tive decisions [28–31], especially women infected with ditions for a minimal risk pregnancy in developed coun- HIV [32–42]. In developing countries, WLH have less tries, researchers suggest HIV serostatus and knowledge favorable and more varied conditions for sexual health about HIV transmission does not significantly influence and reproductive services than WLH in developed coun- reproductive decision-making for WLH [18, 19]. Due tries [43–46] due to a complex mixture of gender and to the available conception and contraception options, disease associated inequities related to cultural norms WLH can avoid pregnancy or safely attempt pregnancy [47], religious doctrines [48], poverty [49], health policy with good outcomes [20]. Yet, only a third of WLH in [50], health services [51], and emergency conditions [52]. Huertas‑Zurriaga et al. Reprod Health (2021) 18:148 Page 4 of 21 Developed countries provide WLH with the most sup- Search strategy portive environments for sexual health and to engage in Multiple electronic databases were searched includ- reproductive decision-making. As such, the purpose of ing CINAHL, EMBASE, MEDLINE (through PubMed), this study was to explain the reproductive decision-mak- Scopus, Social Science Citation Index, Web of Science, ing process of WLH in developed countries according to Google Scholar, and the Spanish databases Cuidatge, their lived experiences through a synthesis of the quali- Cuiden Enfispo, and SciELO from January 1995 to tative literature. The study fills an important gap in the December 2019. Although most qualitative research arti- literature as the research is individual qualitative stud- cles for this review were anticipated to be indexed in the ies lacking the synthesis perspective necessary to guide MEDLINE database [70], all research articles related to intervention development [14, 53]. reproductive decision-making and WLH were of interest. As such, the database filters specific to research methods Methods were not used to limit the possibility for bias in article Qualitative research synthesis (QRS) [54], or the aggre- selection [71]. To minimize unintended bias in the search gative approach to synthesis [55], is aligned with the strategy, published recommendations were referenced for philosophy of pragmatism where “meanings exist as searching databases, including CINAHL [72], EMBASE ready-made” [56] to convey “practical usefulness” [57] [73], MEDLINE [74] and PsycINFO [75]. that informs decisions and practices at the clinical or Keywords, defined by the research team and informed policy levels [58]. As such, the result of a QRS is more by systematic reviews in related areas, were joined by than a simple summary of findings from the literature Boolean operators for the database searches. Keywords [59]. For this reason, we completed a QRS with a multi- were used to avoid problems with the unique thesaurus national team approach [60] to interpret data from sys- terms for each database with varied meanings between tematically selected articles to generate new insights disciplines [73, 76]. The keywords included: HIV, AIDS, and additional knowledge [61]. The research protocol human immunodeficiency virus, acquired immunodefi- (CRD42018091971) was registered with the International ciency syndrome, women, women living with HIV, child- Prospective Register of Systematic Reviews, PROSPERO bearing, desire for children, fertility, family planning, [62]. The results are reported according to the Preferred pregnancy, reproduction, reproductive behavior, repro- Reporting Items for Systematic Reviews and Meta- ductive choice, reproductive health, decisions, decision Analyses (PRISMA) statement [63], and the Enhancing making, intention, and mother-to-child transmission. Transparency in Reporting the synthesis of Qualitative The search strategies were tested in November 2017. research (ENTREQ) recommendation [64]. An example of the algorithm used for the PubMed search strategy is provided in Table 1. The full searches Inclusion criteria were completed the week of December 17, 2018 with an Studies published in peer-reviewed journals between updated search for the calendar year 2019 completed in January 1995 (the year HAART appeared) and December June 2020. This systematic review serves as the founda- 2019 using qualitative methods to address reproductive tion for a living systematic review [77] with updates decision-making in WLH were included in this study. The scheduled every five years. term ‘developed country’ was operationalized by mem- bership in the Organization for Economic Co-operation Study screening and Development (OECD). In this regard, the 35 OECD The study screening was completed with a structured [65] member countries are substantially similar in their process [78]; first by title review, then by abstract review, compliance with international laws, adherence to human and finally by full text review by four pairs of experi- rights conventions, and adoption of evidence-based clini- enced reviewers. The study titles were first independently cal practice guidelines for HIV/AIDS [66–69]. The publi- screened by paired reviewers to identify the studies that cation language was limited to English, French, German, met the inclusion criteria. Next, the reviewers evaluated Portuguese, and Spanish as these were the language pro- the abstracts for inclusion, reviewing a different group ficiencies of the research team. Studies were excluded if than the previous step. Finally, the reviewers assessed the target population was women less than 18 years or the full text of the remaining articles by strictly applying more than 50 years of age, women living in prisons or the inclusion and exclusion criteria. During each round, psychiatric institutions, or mixed-method studies or sys- a third reviewer checked the work of each review pair tematic reviews in which qualitative data could not be for errors. If there was disagreement between the paired separated from the quantitative. reviewers, the document advanced to the next review Huertas‑Zurriaga et al. Reprod Health (2021) 18:148 Page 5 of 21 process to limit deselection bias. The primary investiga- taxonomy of findings from sustained comparisons, con- tor checked the level of agreement between review pairs cepts translated in vivo, and imported concepts [88]. The for the title and abstract phases, with the goal of 95% taxonomy was comprised of items with different seman- agreement. During the full text review, the excluded and tic relations, either within the same or between different included articles were checked by another pair of review- themes. ers as a final verification. At this point, six studies were In a staged process [89], two researchers (AHZ and excluded from the synthesis due to samples with all JLM) conducted an inductive analysis [90] followed by men (n = 3), serodiscordant couples with HIV negative a deductive process. The results were discussed and women (n = 2), and no participants due to a descriptive triangulated with two other researchers (JEE and SKC) rather than research-based article (n = 1). The PRISMA and checked by additional researchers (PAP and KDC). diagram provides an overview of the screening process The relationships, similarities, and dissonances were (see Fig. 1). synthesized across studies. During this process, key concepts and conceptual themes were identified. Rel- Quality assessment evant findings from one study were compared to the The research team included the appropriate methods themes, metaphors, and concepts in the other studies. and content experts [79] to develop a clear, justified, and As recommended by King [91], the thematic analysis focused review question [80] with realistically defined was not finalized until all the data were reviewed and objectives [81] for an expansive search strategy to iden- the codes checked multiple times. tify relevant research [82]. Four pairs of reviewers inde- pendently screened the articles by applying the inclusion Trustworthiness criteria and assessing the risk of bias. Discrepancies The protocol for this QRS was designed to maximize were solved by AHZ and JLM; and then reviewed by an descriptive validity (factual accuracy of data), inter- external researcher. Each article included in the full text pretive validity (validity referred to in descriptions analysis was peer-reviewed (AHZ and JLM), and inde- of member checking), theoretical validity (credibility pendently assessed (AHZ, JLM, and PAP) for methodo- of researcher interpretations), and pragmatic validity logical criteria with the 10-item Critical Appraisal Skills (utility and transferability of knowledge) [87, 92, 93]. In Programme (CASP) qualitative checklist [83]. Consen- this regard, several techniques were incorporated into sus was required for inclusion of an article. Congruence the protocol such as the check and rechecks of the ini- between theory, methods, and analysis, researcher reflex- tial search results, maintenance of an audit trail, mul- ivity, and ethical protections was also assessed with the tiple researchers completing article appraisals, expert JBI Critical Appraisal Checklist for Qualitative Research peer reviews, team ’huddles’ to discuss individual and Studies [55]. The checklists were applied to assess the comparative appraisals, member checks, and ongoing minimum quality of study methods, adequacy of ethi- discussion and negotiation [94–97]. cal protections, and trustworthiness [84] rather than to exclude interview data from papers as this could intro- Ethics duce bias [85] Ethics approval was not necessary as the searches were conducted in public databases. There were no human Data extraction subjects involved in this study. However, the included The primary focus for the data extraction was the results studies were evaluated for ethical standards with the and the conclusions sections of each article. General data JBI Checklist. Each of these studies was approved by an extracted from the articles, line-by-line, were assembled ethics committee or institutional review board. in an Excel spreadsheet, including study setting, aim, ings. Then, the data were imported into Nvivo® to digi- participants, study design, direct quotes, and key find- Results A total of 4,519 articles were identified through the sys- tally record the codes that emerged as themes from the tematic literature searches and reduced to a sample of coding [86]. The level of coding was words, phrases, and 20 qualitative articles for analysis (see Table 2). Each sentences. article met the requirement for inclusion using the CASP checklist. However, one article [98] was assessed Data synthesis as weak in theoretical and methodological congru- Following the recommendations of Sandelowski and ence with the JBI checklist but included to limit selec- Barroso [54], the data analysis was circular rather than tion bias. The articles represented 1,395 participants linear to facilitate movement between the emergent with data from 12 of the 35 OECD member countries; themes from the findings [87]. This process resulted in a Huertas‑Zurriaga et al. Reprod Health (2021) 18:148 Page 6 of 21 Table 1 Search strategy for PubMed ("Reproductive Health" [Mesh]) AND women living with HIV ("Decision Making" [Mesh]) AND "Fertility" [Mesh]) AND "HIV" [Mesh] ("Reproductive Behavior" [Mesh]) AND "Fertility" [Mesh]) AND "HIV" [Mesh] ("Reproductive Behavior" [Mesh]) AND "Decision Making" [Mesh]) AND "HIV" [Mesh] ("Reproductive Behavior" [Mesh]) AND "HIV" [Mesh] ("Fertility" [Mesh]) AND "Intention" [Mesh]) AND "HIV" [Mesh] ("Reproduction" [Mesh]) AND "Decision Making" [Mesh]) AND "HIV" [Mesh] ("Decision Making" [Mesh]) AND "Reproductive Health" [Mesh]) AND "HIV" [Mesh] ("Family Planning Services" [Mesh]) AND "HIV" [Mesh] Childbearing decision AND HIV Childbearing decision AND AIDS Reproductive AND decision making AND HIV Reproductive AND decision making AND AIDS Fertility intention AND HIV Fertility intention AND AIDS Fertility AND decision making AND HIV Fertility AND decision making AND AIDS Child desire AND AIDS Child desire AND HIV Reproductive choice AND women living with HIV about half the studies were from urban areas within the “Ah, it’s just always in the bedroom, HIV. It’s always United States. there.” [98] From the data, 45 subthemes emerged, and these "…when I looked at myself in the mirror, I could see were organized into 15 themes. Then, the themes were around me the shadow of the virus (...). It was hor- grouped into three meta-themes to explain the factors rible because I was disgusted by myself. I looked influencing the reproductive decision-making of WLH, at myself in the mirror and I could see around me, including: (1) Shattered identity, (2) Barriers, inequities, literally, a grey shadow ... And I thought “this is the and misinformation, (3) Coping, resiliency, and support virus.” [100] (see Table 3). When women learned about their HIV Sexual and reproductive decisions were modified; their positive diagnosis, their meaning in life changed, and desire for intimacy reduced, sexual life changed, and their identity altered. Yet, motherhood remained a pri- breastfeeding prohibited [101]. They feared disclosing mary goal for the women. Reproductive decision-mak- their HIV status to intimate partners, family, and friends ing was perceived as a complex process influenced by as they lost their sense of normality [61]. Their life plans many facilitators and limited by as more barriers. The were broken when HIV unexpectedly appeared [61, 102]. facilitators helped WLH cope with their new situation Their identity was subjected to continued self-criticism to become more resilient, while the barriers made their that required interventions to redefine themselves. How- situation more difficult to manage. ever, pregnancy was perceived to be a route to being nor- mal and a way to feeling complete as a woman [61, 101, Shattered identity 103] WLH described a shattered identity, referring to two main areas: their womanhood and their motherhood “It [pregnancy] is sort of like a completion of myself experiences. When they learned of their positive sta- as a woman.” [103] tus, they were devastated, and they no longer felt like Motherhood was one of the most important social a woman [61, 99]. They described how HIV assaulted identities for women. WLH felt recognized by their com- their bodies; stole their sense of beauty, and left the munity when had a child [104, 105] because motherhood perception of dirtiness [61]. HIV was a barrier present is a cultural norm. The phenomenon was therefore cul- everywhere and all the time [61, 98–100] turally constructed [8, 104, 106] Huertas‑Zurriaga et al. Reprod Health (2021) 18:148 Page 7 of 21 Figure 1. PRIMSA diagram “I just want one. I don’t want a whole house full… emotional pain. Consequently, WLH were psychologi- I just want one baby, something that’s me, a part of cally harmed and their identity often permanently dam- me. That’s something that I can develop and it’s still aged [19, 108]. great too.” [106] “When I was twenty-six, and I’m now forty-four, Some WLH felt pushed by their families and others I didn’t see my life going that far, so I would have to become mothers [107]. Many women reported losing made different choices. I think my main thing would their children to adoption, foster care, or placement with have been my choice of having children. I was caught family members due to acute illnesses, chronic diseases, in the middle of the epidemic then. I regretted not and/or criminal problems such as drug abuse. These bro- having that child. And, you know, as life went on, I ken mothering opportunities resulted in intense guilt and still regret it.” [108] Huertas‑Zurriaga et al. Reprod Health (2021) 18:148 Page 8 of 21 Barriers, inequities, and misinformation some risk and I started to become a bit paranoid.” Institutions and clinicians [111] When making reproductive decisions, WLH encountered barriers to accessing health services [106], including dif- ficulty obtaining appointments, lengthy wait times at Misinformation and fears appointments, problems with insurance coverage, inad- Their general knowledge about HIV, varied; however. equate transportation, and issues related to immigration WLH commonly believed they cannot be mothers. They status. These barriers resulted in some women access- had the wrong beliefs about the impact of HIV on their ing services at new clinics with unfamiliar clinicians that ability to become pregnant [99, 105, 106]. resulted in uncomfortable feelings [106]. "Like most women, I always wanted to have a baby, "When you have certain insurances, it doesn’t cover but thought it wasn’t an option anymore when I was the places you want to go where you feel comforta- diagnosed with HIV." [105] ble. You have to go outside and go to another person In terms of becoming pregnant, WLH feared the trans- you don’t even have a background on. With my old- mission risk for their child and partner, worried about est all my prenatal care was at Hospital X; with my possible health complications, and anticipated adverse youngest I had a private doctor. It’s not always easy." effects from HAART [8, 19, 101, 102, 105, 107]. Yet, they [106] still wanted to become pregnant and to give birth as WLH generally felt clinicians were not supportive, naturally as possible. Although some WLH understood reporting HIV-related stigma [19, 61, 101, 102, 106, 109, the transmission risk was low, they remained fearful and 110]. The WLH felt their physicians were not helpful and worried [8, 19, 101–103, 105, 107]. explained they tried to discourage them from pregnancy "My other fear is that my baby will come out posi- due to their HIV positive status [105, 110]. tive.” [103] “My doctor was really insensitive […]. I really felt In contrast, other women considered HIV to be a death trapped.” [110] sentence. They considered the psychological impact of The physicians never asked about their desire to have their health and their longevity for their children when children [105]. As a result they felt repressed, as their making decisions about pregnancy [8, 19, 61, 99, 102, right to decide was coerced [107, 109]. 103]. "The people had pretty much brainwashed me . . . “Am I going to get sick? Am I going to die, and the they just reared into me, telling me . . . “Right now it’s baby is going to live? I think about all of this.” [103] not a good time . . ., you ain’t got a place to live, you WLH also confronted overwhelming guilt about their ain’t got no food, you ain’t got no job, you ain’t got HIV negative partner, past mistakes such as drug abuse, this, you ain’t got that.” So, I took a look at all that or previous decisions to give up their children for adop- and just decided to have an abortion … [I]t hurt, tion [8, 19, 61, 102, 108]. Yet again, WLH expressed their you know, because I wanted to keep it but I had to desire to change the past by becoming good mothers. take a look at the situation and say, oh okay, that, that was right, yeah, okay. That’s true, though, but “My last daughter was also born tox-positive for let me make that decision, you know, it was just like cocaine... and I want to change that... I want to make a rushed thing and . . . and I said okay, I’ll have an sure it doesn’t happen again.” [102] abortion, I can’t do anything else." [109] WLH wanted more information about contracep- Stigma tion methods and approaches to safe sex. They wanted Generally, WLH did not feel supported by family mem- to learn about their disease, including more discussions bers as they did not want to hear about their pregnancy. with clinicians; something they were unable to find in the As family members assumed WLH cannot have babies, health system [61, 105, 107, 111]. the women experienced stigmatizing behaviors and com- “I look for things that are safe 100%. There have not ments [8, 19, 106, 109, 112]. been recorded cases of anyone becoming infected “My mom told me to erase it out of my head... And it (in oral sex), so I thought that’s 100% safe. So like a was always the same thing: I was selfish.” [109]. month later I was reading another one of these small leaflets and it says although the risk is small there is This stigma was also present in interactions with part- ners and clinicians [8, 19, 61, 99, 102, 105, 106, 108, 109]. Table 2 Summary of included studies Author/s Sample/setting Methodology and methods Main findings Year Alvarez-del Arco (2019) 20 WLH, between 18 and 45 years of age (Spain) Qualitative study, design not stated. Data collection: The findings were presented as three topics impact of Interviews (open ended). Dates: May and July 2013. HIV diagnosis, concept of motherhood, and dimen‑ Participants resided in Spain but represented Eastern sions of motherhood with four dimensions, including Europe (4), Latin America (6), Spain (9), and Sub- motherhood ideal, desire for procreation, the decision Saharan African (1) of motherhood, experience (or the lack of experience) of motherhood. The authors noted some dimensions Huertas‑Zurriaga et al. Reprod Health emerged from the interview data as well as organized with the theoretical model Barnes and Murphy (2009) 80 WLH, childbearing age, living in Oakland and Chi‑ Grounded theory. Data collection: Interviews (semi- WLH reproductive decisions are based on their judg‑ cago (United States) structured). Dates: 1995 to 2000 ment of the relative weight of positive aspects of motherhood versus the often-negative pressures of social and public opinion (2021) 18:148 Barnes (2013) 36 WLH, mothers, from Oakland and Rochester (United Grounded theory. Data collection: Interviews (in- WLH who had living children experienced longevity States) depth). Dates: 2005 to 2009 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) 20 WLH heterosexual and 20 men > 18 years old in four Grounded theory. Data collection: Interviews (in- Limited support and counseling is a barrier to exercis‑ states of Mexico depth). Dates: 2003 to 2004 ing 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 inter‑ Meta-ethnography. Data collection: Interview and HIV infection is a burden in relation to sexuality and viewed from wealthier countries outside the Asian observational data. Dates: 1997 to 2012. Locations: reproduction. The weight of the burden can be and African continents USA (11), Canada (2), UK (2), Australia (1), Ireland (1), heavier or lighter. Conditions making the HIV burden and Brazil (1). Two systematic searches (sexuality heavier included: HIV as a barrier, feelings of fear and and reproduction) in CINAHL and MEDLINE. Articles loss, whereas motherhood, spiritual beliefs, and sup‑ assessed with Critical Appraisal Skills Programme portive relationships make the HIV burden lighter Cuca and Rose (2016) 20 WLH, > 18 years old, diagnosed at least 1 year prior Grounded theory with situational analysis. Data collec‑ Reproductive choices are made in situations of chaos, to study; pregnant at least once since their HIV diag‑ tion: Interviews (in-depth) and observations. Dates: instability, and stigmatization. For some women, nosis living in San Francisco (United States) 2009, October to 2010, February; and 2012, October providers are sources of stigma. Participants demon‑ and 2013, February strated resistance to stigmatization, through building supportive communities and developing trusting relationships with HIV providers Page 9 of 21 Table 2 (continued) Author/s Sample/setting Methodology and methods Main findings Year Giles et al. (2009) 45 WLH, ages 18 to 44, living in Melbourne (Australia) Content analysis. Data collection: Interviews (semi- The 15 women who had their children after their HIV structured questions). Dates: 2005 to 2006 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 Huertas‑Zurriaga et al. Reprod Health 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 WLH, sexually active, ages 18 to 45, living in South‑ Collaborative with thematic analysis. Data collection: Decisions to conceive are influenced by women and ern Florida (United States) Interviews (open-ended questions). Date: Unknown partners; knowledge and use of safer conception (2021) 18:148 practices are low. Discussion and support from part‑ ners, family and providers is limited and diminished by stigma and nondisclosure Keegan et al. (2005) 21 WLH, ages 22 to 54, living in the United Kingdom Interpretative phenomenological analysis. Data col‑ Themes identified included: (1) difficulties with sexual lection: Interviews (in depth and semi-structured). functioning, specifically lowered libido and enjoyment Dates: Unknown and reduced intimacy; (2) barriers to forming new relationships: fears of HIV disclosure, fears of infecting partners; (3) coping strategies: included relation‑ ship 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 difficul‑ ties that appear to be relatively unchanged despite the advent of HAART​ Kelly et al. (2011) 6 women and 4 men living with HIV, reproductive Qualitative narrative approach. Data collection: Inter‑ Personal priorities and meanings are central to the trajectory in Northern Ireland views (in-depth) Dates: 2008 to 2009 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 repro‑ ductive desires along with a desire for physical pleas‑ ure, 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 helps WLH embrace the uncertainties of reproduction in the context of HIV Page 10 of 21 Table 2 (continued) Author/s Sample/setting Methodology and methods Main findings Year Kelly et al. (2014) 10 women and 5 men living with HIV, different stages Qualitative narrative approach. Data collection: Inter‑ HIV positive women desire for children reflects the of disease, during reproductive trajectory in Ireland views (in-depth). Dates: 2007 to 2010 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 Huertas‑Zurriaga et al. Reprod Health 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 unpro‑ (2021) 18:148 tected 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 to 55, living in Los Angeles, Mil‑ Grounded theory. Data collection: Interviews (in Risk of vertical transmission was perceived by WLH but waukee, New York, and San Francisco (United States) depth). Dates: 1998, December to 1999, August 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 Systematic review of 12 databases with meta-synthe‑ For pregnant WLH, pregnancy evolves as a mediated peer-reviewed journals conducted in Brazil and the sis. Dates: 2005 to 2015. Articles assessed with Critical experience of commitment and dedication. The vital New York (United States) Appraisal Skills Programme life experience of pregnancy is defined as an interplay of emotions, coping strategies, and feelings of satisfac‑ tion. 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 Systematic review of qualitative and quantitative Socio-demographic, health status and pregnancy, reproductive decisions of WLH published in peer- studies. Dates: 1985 to 2016. Articles assessed with religion and spirituality, beliefs and attitudes about reviewed journals, (14 US, 1 UK, 1 Ireland) Critical Appraisal Skills Programme antiretroviral therapy, clinicians, significant others, motherhood and fulfillment, fear of perinatal infection and infection of partner(s), birth control and preg‑ nancy management are the factors that influence the reproductive decision-making process in WLH Page 11 of 21 Table 2 (continued) Author/s Sample/setting Methodology and methods Main findings Year Sanders, (2008) 9 WLH, mothers, ages 34 to 53, living in New York Phenomenology. Data collection: Informant interviews. The experience of pregnancy for a woman with HIV is (United States) Dates: 2006 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 to 53, living in New York Descriptive qualitative. Data collection: Secondary data Three themes: (a) unprotected sexual relations with the (United States) analysis to explore the lived experience of pregnancy intent to become pregnant, (b) shifting responsibil‑ after diagnosis with HIV (thematic analysis). Dates: ity for condom use as the relationship progressed, 2006 and (c) insufficient knowledge of how to reduce Huertas‑Zurriaga et al. Reprod Health 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 to 45, living in New York (United Qualitative content analysis. Data collection: Focused Women in general reported a decreased sexual activity, States) interviews of WLH. Dates: 146 interviews from 1994, a loss of sexual interest, and a diminished sense of October to 1996, November (prior to the advent of sexual attractiveness following their HIV infection. The (2021) 18:148 HAART regimens) and 138 interviews from March reasons for why they had discontinued sexual activity 2000 to April 2003 (after widespread availability of or were no longer interested in sex, included anxiety HAART) about HIV transmission, a loss of freedom and sponta‑ neity during sex, fears of emotional hurt, not wanting the hassle of sexual relationships, a loss of sexual inter‑ est, 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 Toupin et al. (2019) 42 heterosexual WLH, childbearing age (mean Qualitative study design not stated. Data collection: The researchers explicated the themes for decision-mak‑ 35 years) living in Montreal (Canada) Semi-structured interviews. Dates: 2004 to 2005 ing of WLH at each stage of motherhood, including Participants described as African (17), Haitian (12), during conception (deciding based on the open- and French Caucasian (13) mindedness of providers, during pregnancy (manag‑ ing transmission risks during pregnancy, making the best of medical resources, and incessant worrying about ART), and during post-partum (fearing child diagnosis, evaluating treatment during pregnancy, and reasons for continuity and change) Walulu and Gill (2011) 15 WLH, mothers, living in Midwest (United Grounded theory. Data collection: Interviews (in- The core category was living for my children, which States), > 18 years old, with at least one child living depth). Dates: Unknown involves five areas: Knowing my diagnosis, living with at home 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 Content analysis. Data collection: Interviews (semi Motherhood is viewed as a joy and as a means of living in New Jersey (United States) structured) based on Fishbein’s Theory of Reasoned meeting unmet needs but there is a concern about Action. Dates: Unknown children’s well-being. HIV infection has a minor role in HIV-positive women’s lives WLH women living with HIV Page 12 of 21 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 Huertas‑Zurriaga et al. Reprod Health Broken plans Reduced sexual desire Motherhood Becoming mothers as a route to normality Missed mothering opportunities Motherhood as a social responsibility (2021) 18:148 Motherhood as a personal desire (value and identity) Barriers, Inequities, and Misinformation System barriers External barriers preventing access to 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 Page 13 of 21 Huertas‑Zurriaga et al. Reprod Health Table 3 (continued) Meta-themes Themes Sub-themes Coping, Resilience, and Support Self-care and for caring others Treatment adherence Changes in sexuality: protecting others from HIV (2021) 18:148 Negotiating sex Family planning Planned pregnancy Accidental/passive pregnancy Avoiding recommendations Child HIV + because of 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 Page 14 of 21 Huertas‑Zurriaga et al. Reprod Health (2021) 18:148 Page 15 of 21 As internalized stigma developed, WLH self-isolated celibacy [61]. WLH reported barriers to using contracep- because they feared disclosing their HIV status even to tives such as cost and rejection by their partner [104]. seek advice from clinicians about reproductive decisions The women needed strategies to negotiate safe sex [61, [109]. Also, fear of rejection made WLH especially reluc- 104]. This process was described as passive negotiation in tant to disclose their HIV status to partners and friends studies [61, 111]. when speaking about pregnancy [8, 61, 99, 105–108]. “I just told them it was because you don’t know "Stigma …makes that person not want to talk about where I come from, I don’t know where you come it [pregnancy]. So, you have already labeled me, you from, so it is good to be careful and at the same time already said how you feel about it. If we are talking, I don’t want to get pregnant.” [111] and you already said something bad about someone WLH considered pregnancy planning to protect their who has the virus -- why would I open up to you? health, as well as their partner, prior to trying to conceive You’re going to talk about me. And see my feelings [106]. Nonetheless, some women believed reproductive are going to get hurt.” [106] decisions were passive plans, even accidental situations; and they needed to assume responsibility for the conse- quences [102, 106]. Some WLH reported lacking confi- Feeling undermined dence in HAART to reduce the risk of mother-to-child WLH want to be loved and to have an intimate partner transmission [107]. They believed that if the infant is [61]. But occasionally their decisions were coerced by born infected this is destiny [102]. men, who forced WLH to have unprotected sex or to become pregnant [61, 106]. When men knew they were “It’s not really a planning thing, they just talk about HIV positive or when they became pregnant, the rela- it if they want to have a baby, and if it happens then tionship was disrupted. In these cases, some woman felt it happens.” [106] abandoned or, on the contrary, others had subsequent Other WLH preferred to conceive without medical unwanted pregnancies [61]. intervention so they engaged in unprotected sex. For "I was always the one pushing him to use condoms, these women, love and commitment with their partners and he didn’t want to. Eventually when we were liv- was more important than the risk because childbirth ing together, I just stopped. It’s not always going to be should not be medicalized [105, 106]. my responsibility to push that." [112] “When you find a guy and you feel comfortable with Finally, WLH sometimes experienced homelessness, them and they accept what is going on with you, you poverty, domestic violence, drug abuse, and other mar- cannot use condoms, even though you know you can ginalizing situations. Instability in their lives made repro- get re-infected…when you are blinded by that per- ductive decisions difficult to manage, including whether son you take risks, I take risks, and say ain’t nothing or not to continue with unplanned pregnancies [102, going to happen to me, ain’t nothing happened to me 109]. Some women believed having a child without the so far so what the hell.” [106] resources to create a stable family environment was irre- Sharing their status with others was a coping strategy sponsible [102]. identified by WLH to accept their diagnosis. Creating “It’s not an irresponsible thing to have a child. It’s an empowering environments such as support groups for irresponsible thing to have a child without a father, people to understand their situation appeared to be help- without a decent income, without a place to live and ful [109]. without the ability to take care of this child…while “Surrounding myself around people that’s HIV… It dealing with your own stuff.” [102] helps me a lot, it chills me down.” [109] However, intimate partners were the most important Coping, resiliency, and support person for reproductive decision-making as they offered Sexuality and reproduction overlap with love, intimacy, the women the self-confidence they needed to make a and commitment but all are disturbed by HIV. As the decision [101, 105, 106]. In some cases, WLH reported WLH did not want to harm others by transmitting their their relationships were stronger following HIV diagnosis HIV, they searched for approaches for safe sex or chose due to the increased partner support [101]. Huertas‑Zurriaga et al. Reprod Health (2021) 18:148 Page 16 of 21 "He’s [partner] with me, he’s got my back 110%. So, Discussion anything I decide I want to do he supports me -- Once a woman is diagnosed with HIV, life changes and there’s not a lot of men that do that. When I met and identity alters. Many WLH cancel motherhood plans let him know what my status was, he told me “and due to knowledge deficits, misinformation, stigma, and what?” He didn’t see my status he saw that person judgment. Being a mother is defined by their feminine that I was, that I am, he knows that I am a good per- identity as well as social expectations defined by the cul- son and that’s what." [106] tural context. As such, WLH seek to salvage their role as "good mothers" to stabilize their identity and to main- Despite the challenges when seeking advice about preg- tain their social value threatened by HIV [6]. In general, nancy from clinicians and family, the women wanted to people living with HIV experience a wide range of nega- make a good decision. They were not discouraged from tive emotions such as stress [113], fear [114], guilt [107], wanting children by negative input from family members hopelessness [115], and internal stigma [116]. In the case or their clinicians [106, 110]. of WLH engaged in reproductive decision-making fol- "I really don’t care for…what family has to say, lowing broken mothering opportunities, their guilt and because …as a grown individual you have to be pain is elevated. grown enough… to make your own decisions." [106] In consonance with available evidence, this study found “Being a mother makes me grow on a personal level, a lack of knowledge about the relationship between liv- but the doctor doesn’t think of motherhood as med- ing with HIV, sexual health, and reproductive decision- icine for the soul, a morale booster that affects me making [21, 117]. The women believed they should not psychologically.” [110] become mothers, and their reproductive desires were broken by the force of this belief [117]. As Fransen and However, WLH shared their decision with God as they Guarinieri [24] concluded, a woman´s desire to have chil- believed their situation was the plan God had for them dren is not influenced by the HIV diagnosis, but their [8, 19, 61, 99, 102, 108, 110]. God plays an essential role ability to act upon this desire is blocked by the stigma in reproductive decision-making as ‘He’ will protect resulting from the negative attitudes of people in their their children, so the final decision is shared with ‘Him.’ lives. Moreover, their sexuality is modified, and the feel- [99] WLH felt relief because they could depend on spir- ing of normality is lost. In this regard, WLH experi- itual forces, including the greater protection from God’s ence sexual problems including decreased function and power. diminished desire, activity, and satisfaction compared to "But basically, it’s a decision I made with my higher uninfected women [118]. power. I just ask God to show me what to do." [19] The WLH wanted the support of their clinicians as “And if I take care of myself, I think maybe God will they tried to understand the possibility of safely hav- give me a lot more time of life. Because I pray to God ing a child [99]. Their role is essential in correcting the everyday: “God, give me life, I want see my daugh- perception of risk in helping WLH make an informed ters to grow up with me, I want them to see me well, decision about safe conception and pregnancy [24, 117]. I want myself being able to work" (Alvarez-del Arco However, some studies suggested there is a persistent et al., 2018). stigma related to pregnancy in HIV-affected couples. In this case, clinicians are more likely to ask their patients When WLH were aware of medical advancements about contraception practices rather than reproductive related to pregnancy, the possibility of becoming a intentions [20]. But, WLH want to be viewed as a whole mother was real [105]. Mothering gave them a reason to person, not only as a diseased entity [18]. For these rea- continue their fight against HIV as they wanted to live, sons, WLH perceive clinician assumptions about their and they could be stronger [8, 19, 61, 99]. Moreover, sexual practices and reproductive goals are barriers to some WLH felt they received a second chance, as they reproductive discussions. Lassi et al. [119] recommended had an opportunity to correct their past parenting mis- clinicians engage in preconception counseling for women takes and to capture their missed mothering opportuni- of reproductive age when they test HIV-positive as well ties [19, 108]. as screening with their partners prior to pregnancy. "However, over the years, with improvements in Comprehensive reproductive health counseling for WLH treatment and people with HIV living longer, it is necessary, but clinicians need to be taught how to be started to feel possible. The doctors told us that the authentically present and to be engaged in shared deci- risk of the baby having HIV has gone down to 1%" sion-making with HIV-affected couples [20]. [105]. Huertas‑Zurriaga et al. Reprod Health (2021) 18:148 Page 17 of 21 From this qualitative synthesis, stigma was evidenced limitations, the search included multiple languages in the interactions WLH reported with friends, families, due to the multinational team, extensive database partners, and clinicians [20, 26]. Stigma expands into searches, and comparable environments. Third, the marginalization, stress, uncertainty, and isolation [8]. studies spanned almost three decades, defined by the The WLH experience insecurity about their prognoses, period of HAART. Despite the wide span, there was potential treatments, changing social relationships, and data consistency across the decades. Fourth, the sys- new personal identity [120]. Significant stigma for WLH tematic review was completed from 1995 to 2018 with results from barriers to accessing preventive services and an update in 2019 introducing an increased possibil- health care [121]. WLH have similar concerns about cli- ity for search bias. However, the broad search strat- nician support and uncertainty about health care as peo- egy minimized the impact of this concern. Finally, the ple living with acute and chronic conditions. search might have excluded studies not published in Reproductive decision-making for each WLH is non-indexed journals or in different contexts, such as unique, as they use their repertoire of coping mecha- thesis or dissertations. However, the search strategy nisms to stay alive. When entering a support group for and the database selection were based on published example, they can become part of a larger reality with recommended practices. peer support that provides collective strength [21]. Also, partner support is indispensable as they are identified as the most important person in reproductive decision- Conclusion making [10]. Although clinicians are often not actively For WLH, reproductive decision-making is a complex involved in reproductive decision-making, clinical process based upon incomplete information and inac- advancements offer another opportunity for the women curate perspectives. In developed countries, WLH to correct past parenting mistakes as hope to become a engage in reproductive decision-making more fre- good mother. Hope is capable of changing their lives and quently due to advances in pharmaceuticals and bet- motivating the women to go forward [122] in fighting the ter evidence-based practices while receiving limited HIV. assistance from family, friends, partners, and clini- Generally, WLH wanted to make their own reproduc- cians. Decisions regarding reproduction are individual tive decisions despite many barriers while recognizing but women are not able to make an informed decision they needed more support. The women frequently noted without guidance and medical consultation. Clinicians spiritual forces protected them, as well as planned their need to be authentically present for discussions and lives. As such, these women felt a strong duty to care for open to the new possibilities for WLH in the context their babies in a way that facilitated self-care. The risk of of the modern person-centered health system. An inte- transmitting their infection to their fetus, or their part- grated approach with comprehensive multidisciplinary ner, is their most pressing concern [6, 18]. They also counseling is necessary to address reproductive deci- fear death because they do not want to abandon their sion-making and sexual health as a right. Clinicians children [123]. Spirituality becomes an effective cop- need to initiate discussions for WLH in the same way ing mechanism for WLH to provide meaning, guidance, as other women. support, protection, and inner strength [124–127]. In clinical practice, WLH should be engaged with a human caring approach to identify personal preferences, Study limitations consider individual situations, and provide person-cen- There are several limitations to consider. First, the tered care. Clinicians should learn to collaborate with synthesis relied on the analyzed data from each article WLH in reproductive decision-making through regular that might not reflect the meaning from the raw data. family planning conversations and routine sexual health Second, to synthesize studies from countries with assessments. For more effective relationships with WLH, comparable social wellbeing and economic conditions, clinicians need to be authentically present, including the search was limited to OECD member countries. demonstrating compassion and understanding to mini- As such, the review may not be generalizable to devel- mize the stigma associated with sexual health. Finally, oping countries. In addition, almost half the included evidence-based practice guidelines for sexual health and studies were conducted in urban areas of the United family planning need to be developed for WLH to con- States which may further limit the generalizability of sistently deliver culturally competent, integrated, and the findings within the target countries. Despite these holistic person-centered care. Huertas‑Zurriaga et al. Reprod Health (2021) 18:148 Page 18 of 21 Abbreviations Received: 29 June 2020 Accepted: 24 June 2021 CASP: Critical Appraisal Skills Programme; ENTREQ: Enhancing transparency in reporting the synthesis of qualitative research; HAART​: Highly active antiretro‑ viral therapy; HIV: Human immunodeficiency virus; JBI: Joanna Briggs Institute; OECD: Organisation for Economic Cooperation and Development; PRISMA: Preferred reporting items for systematic reviews and meta-analyses; PROS‑ References PERO: International prospective register of systematic reviews; QRS: Qualitative 1. Joint United Nations Programme on HIV/AIDS: UNAIDS: Data 2019. research synthesis; WLH: Women living with HIV. Geneva: UNAIDS; 2019. 2. Joint United Nations Programme on HIV/AIDS: Miles to go: Closing Acknowledgements gaps, breaking barriers, righting injustices. Geneva: Joint United Nations We want to thank Dr. Maria Feijoo-Cid (Universitat Autonoma de Barcelona) Programme on HIV/AIDS; 2018. for her assistance with the initial review. Also, we recognize Dr. Rosalie Main‑ 3. Rodriguez VJ, LaCabe RP, Privette CK, Douglass KM, Peltzer K, Matseke ous, Dean of the College of Nursing, Texas Woman’s University, for continuing G, Mathebula A, Ramlagan S, Sifunda S, Prado GW, et al. The Achilles’ to support the Center for Global Nursing, including funding faculty exchanges, heel of prevention to mother-to-child transmission of HIV: protocol and facilitating the global research activities that stimulated this research implementation, uptake, and sustainability. Sahara J. 2017;14:38–52. project. 4. Kabapy AF, Shatat HZ, Abd El-Wahab EW. Attributes of HIV infection over decades (1982–2018): a systematic review and meta-analysis. Authors’ contributions Transbound Emerg Dis. 2020;67(6):2372–88. All authors participated in the preparation of this manuscript. The following 5. Teeraananchai S, Kerr SJ, Amin J, Ruxrungtham K, Law MG. Life expec‑ authors were involved in the stated phases of the project: Study conception tancy of HIV-positive people after starting combination antiretroviral (AHW, JLM); study design (AHW, JLM, PAP); data collection (AHW, PAP, JEE, therapy: a meta-analysis. HIV Med. 2017;18:256–66. SKC, SAF, LPD, JLM); data analysis (AHW, PAP, JEE, SKC, JLM); data interpreta‑ 6. Gomez-Suarez M. Satisfacción de necesidades de anticoncepción en tion (AHW, PAP, JEE, SKC, LPD, JLM); drafting the manuscript (AHW, JLM, PAP); mujeres positivas al VIH: Efecto sobre la eliminación de la transmisión table development (LPD, JLM, PAP); substantial revisions to manuscript (AHW, vertical del virus [Meeting contraceptive needs of HIV-positive women: KDC, JLM, PAP), critical revisions to final manuscript (JEE, JLM, PAP); and senior Effect on elimination of vertical transmission of HIV]. Rev Panam Salud scholar guidance (JEE, PAP, SKC). All authors read and approved the final Publica. 2016;40:479–84. manuscript. 7. Harper DC, McGuinness TM, Johnson J. Clinical residency training: Is it essential to the doctor of nursing practice for nurse practitioner prepa‑ Funding ration? Nurs Outlook. 2017;65:50–7. This project was partially supported through a research dissemination grant 8. Leyva-Moral JM, Piscoya-Angeles PN, Edwards JE, Palmieri PA. The received from the Universidad Norbert Wiener (VRI-D-2020-07-002-RDG) by experience of pregnancy in women living with HIV: a meta-synthesis of Prof. Dr. Patrick A. Palmieri. qualitative evidence. J Assoc Nurses AIDS Care. 2017;28:587–602. 9. Mazzeo CI, Flanagan EH, Bobrow EA, Pitter CS, Marlink R. How the Availability of data and materials global call for elimination of pediatric HIV can support HIV-positive The data used and/or analyzed during the current study are available from the women to achieve their pregnancy intentions. Sex Reprod Health Mat‑ corresponding author on reasonable request. ters. 2012;20:90–102. 10. Sowell RL, Phillips KD, Misener TR. HIV-infected women and motivation to add children to their families. J Fam Nurs. 1999;5:316–31. Declarations 11. Haberl A, Reitter A. How does HIV affect the reproductive choices of women of childbearing age? Antivir Ther. 2013;18:35–44. Ethics approval and consent to participate 12. McIntyre J. Maternal health and HIV. 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