Motherhood and Decision-Making Among Women Living with HIV: A Systematic Review with Qualitative Research Synthesis.

Objective: To explain the reproductive decision-making process of women living with HIV according to their experiences. Design: Systematic review with qualitative research synthesis. Studies were assessed with the Critical Appraisal Skills Programme and the JBI Checklist for Qualitative Research. The protocol was registered with PROSPERO, and the results reported in adherence with the PRISMA statement and the ENTREQ recommendations. Setting: Studies with qualitative data from member countries of the Organization for Economic Co-operation and Development were selected to maintain consistency in the conditions of women living with HIV, including socioeconomic, human rights, and access to health services. Participants: Studies published in journals from 1995 to 2019 with qualitative data about reproductive decision-making among women living with HIV were searched in multiple databases, including CINAHL, EMBASE, MEDLINE (through PubMed), Scopus, Social Science Citation Index, Web of Science, Google Scholar, and the Spanish databases Cuidatge, Cuiden Enspo, and SciELO. Results: From the 4,198 articles identied and assessed, 18 were included for analysis and synthesis with 1,333 participants from 10 countries. Three meta ‐ categories were constructed from 15 themes that emerged from 45 subthemes to give new meaning to the phenomena of reproductive decision-making for women living with HIV as 1) Shattered identity, 2) Barriers, inequities, and misinformation, and 3) Coping, resiliency, and support. Key Conclusions: Reproductive decision-making is a complex process with multiple challenges that women living with HIV encounter with knowledge deciencies and limited social support. Decisions need to be taken judiciously by women living with HIV collaboration with clinicians within the context of a supportive health system. HIV as they considered having a baby. Ten electronic databases were searched for studies published between 1995 and 2019 reporting interviews with women with HIV about becoming pregnant and having a baby. From the 4,198 articles identied, 18 were included for review with 1,333 participants from 10 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 with HIV consider having a baby, they need to feel comfortable and safe speaking with physicians and nurses about family planning. They also need much more support from their partner, as well as family and friends. Strategies need to be implemented to improve the family planning process for women with HIV, including education health care providers about speaking to women about pregnancy and having a healthy baby.


Introduction
Globally there are 37.9 million people living with HIV [31.1 million-43.9 million], more than half are women.
[1] In 2018, 82% of pregnant women living with HIV had access to antiretroviral treatment to prevent mother-to-child transmission, with higher rates in developed countries.
[2] The wider treatment coverage with improved adherence among women living with HIV (WLH) has rapidly reduced the AIDSrelated deaths among women.
[3] As such, increased access to Highly Active Anti-Retroviral Therapy (HAART) has shifted HIV from an acute illness to a chronic disease [4] in terms of life expectancy, quality of life, and the opportunity for motherhood. [5][6][7] Motherhood is an important role that gives meaning to a woman's life; however, decisions about pregnancy and childbearing are often complex as HIV impacts many aspects of daily living.[8] For example, there is increased risk for complications during pregnancy [5,8] including maternal infection and adverse perinatal outcome. [9][10][11] Consequently, the factors in uencing reproductive decision-making are remarkably different for WLH, including the potential for the baby to be HIV infected and the pregnancy impact on health and wellness. [10,12] Following the introduction of HAART, mother-to-child transmission has been signi cantly reduced to less than 1% [13], but the knowledge transfer into clinical practice has been slow. [14] Researchers have suggested HIV serostatus and/or knowledge about HIV transmission does not signi cantly in uence reproductive decision-making for WLH. [15,16] Due to the available conception and contraception options, WLH can avoid pregnancy or safely attempt pregnancy with good rates of success.
[17] About a third of WLH reported a pregnancy since diagnosis.
[9] Prior to HAART cesarean section was the recommended mode for delivery [18,19] but European guidelines began promoting vaginal delivery [20] as maternal viral load was identi ed as the most signi cant risk factor for perinatal HIV infection.

Rational for Review
Despite the increasingly favorable situation for pregnancy with HIV, WLH lack the evidence-based information about reproductive options while managing pressures from family, clinicians, and communities to give up the idea of having children. [16,21] Since the reproduction intentions of WLH are not well understood, stigmatizing behaviors force them to hide the disease to avoid rejection by their family, partner, and/or social networks. [8] Compliance with social norms, fear of stigma, and expectations for discrimination in uence the experiences WLH and their partner. [22] Misinformation and prejudice continue to be problematic in clinical practice[23] as WLH do not feel supported by their clinicians and report discrimination and stigma in some cases [24]; resulting in fear and anxiety that negatively impacts relationships with their clinics and con dence in the health system. [25] WLH require comprehensive evidence-based care to safely ful ll their decisions about motherhood, whether this involves preventing or safely advancing a pregnancy[10] to have their own family. [26] However, the current state of research involving reproductive decision making and pregnancy for women with HIV/AIDS can be de ned as a substantial knowledge gap in the literature [14,27] Therefore, the purpose of this study was to explain the reproductive decision-making process of women living with HIV according to their lived experiences.

Methods
Qualitative research synthesis (QRS) [28], or the aggregative approach to synthesis [29], is aligned with the philosophy of pragmatism where "meanings exist as ready-made"[30] to convey "practical usefulness"[31] that informs decisions and practices at the clinical or policy levels. [32] As such, the result of a QRS is more than a simple summary of ndings from the literature. [33] For this reason, we completed a QRS with a multinational team approach[34] to interpret data from systematically selected articles to generate new insights and additional knowledge.
[35] The research protocol (CRD42018091971) was registered with the International Prospective Register of Systematic Reviews, PROSPERO[36]. The results are reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses, PRISMA, statement [37], and the Enhancing Transparency in Reporting the synthesis of Qualitative research (ENTREQ) recommendations. [38] Inclusion Criteria Studies published in peer-reviewed journals between January 1995 (the year HAART appeared) and December 2018 using qualitative methods to address reproductive decision-making in WLH were included in this study. Only research reported from countries of the Organization for Economic Cooperation and Development (OECD) were selected for inclusion, maintaining consistency in the conditions for WLH. In this regard, OECD countries are more likely to be compliant with international laws, human rights conventions, and evidence-based clinical practice guidelines for HIV/AIDS.[39-42] The publication language was limited to English, French, German, Portuguese, and Spanish as these were the languages available on the research team. Studies were excluded if the population was focused on women less than 18 years or more than 50 years of age, women living in prisons or psychiatric institutions, or mixed-method studies or systematic reviews in which qualitative ndings could not be separated from the quantitative.

Search Strategy
Although most of the qualitative research articles for this review were anticipated to be indexed in the MEDLINE database[43], we were interested in locating all research articles related to reproductive decision-making and WLH. As such, the database lters speci c to research methods were not used to limit the possibility for bias in article selection. [44]

Study Screening
The study screening was completed between November 2017 and February 2019 using a structure process[50], rst by title review, then by abstract review, and nally by full text review by four pairs of experienced reviewers. The study titles retrieved from the database searches were rst independently screened by paired reviewers to identify the studies that appear to meet the inclusion criteria. For the included titles, the reviewers then evaluated the abstracts for inclusion, reviewing a different group than the previous step. Finally, the reviewers assessed the full text of the remaining articles by strictly applying the inclusion and exclusion criteria. During each round, a third reviewer checked the work of each review pair for possible errors. If there was disagreement between the paired reviewers, the document advanced to the next review process during the title and abstract phases. The primary investigator checked the level of agreement between review pairs for the title and abstract phases, with the goal of 95% agreement. In the full text review, the excluded and included articles were checked by another pair of reviewers as a nal veri cation. The PRISMA diagram provides an overview of the inclusion and exclusion process (see Fig. 1).

Quality Assessment
The research team included the appropriate methods and content experts[51] to develop a clear, justi ed, and focused review question[52] with realistically de ned objectives[53] (Toye et al., 2014) for an expansive search strategy to identify relevant research.
[54] Then, four pairs of reviewers independently screened the articles applying the inclusion criteria and assessing the risk of bias. Discrepancies were solved by AHZ and JLM; and then reviewed by an external researcher. Each article included in the full text analysis was peer-reviewed (AHZ and JLM), and independently assessed (AHZ, JLM, and PAP) for methodological criteria with the 10-item Critical Appraisal Skills Programme (CASP) qualitative checklist.
[55] Consensus was required for inclusion of an article. Congruence between theory, methods, and analysis, researcher re exivity, and ethical protections were assessed with the JBI Critical Appraisal Checklist for Qualitative Research Studies.
[29] The checklists were applied to assess the minimum quality of study methods, adequacy of ethical protections, and trustworthiness[56] rather than to exclude interview data from papers as this could introduce bias. [57]

Data Extraction
The primary focus for the data extraction was the results and the conclusions sections of each article.
General data extracted from the articles, line-by-line, were assembled in an Excel spreadsheet, including study setting, aim, participants, study design, direct quotes, and key ndings. Then, the data were imported into Nvivo® to electronically recorded the codes, and the emergence of the themes from the coding.
[58] The level of coding was words, phrases, and sentences.

Data Synthesis
Following the recommendations of Sandelowski and Barroso[28], the data analysis was a circular rather than linear to permit the movement between the emergent themes from the ndings[59] with the creation of a taxonomy of ndings with sustained comparisons, concepts translated in vivo, and imported concepts.
[60]. The taxonomy is comprised of items that have different semantic relations, either within the same or between different categories in each domain.
In a staged process[61], two researchers (AH and JL) conducted an inductive analysis[62] followed by a deductive process with the results discussed and triangulated with two other authors (JE and SC), and checked by two additional researchers (PAP and KDC). The relationships, similarities, and dissonances were synthesized across studies. During this process, key concepts and conceptual themes were identi ed. Relevant ndings from one study were compared to the themes, metaphors, and concepts in the other studies. As recommended by King[63], the thematic analysis was not nalized until all the data were reviewed and the codes checked multiple times.

Trustworthiness
The protocol for this QRS was designed to maximize descriptive validity (factual accuracy of data), interpretive validity (validity referred to in descriptions of member checking), theoretical validity (credibility of researcher interpretations), and pragmatic validity (utility and transferability of knowledge). In this regard, several techniques were incorporated into the protocol such as the check and rechecks of the initial search results, maintenance of an audit trail, multiple researchers completing each article appraisal, expert peer review, team 'huddles' to discuss individual and comparative appraisals, and ongoing discussion and negotiation. [64][65][66][67] Ethics Ethics approval was not necessary as all the search was conducted in public databases. There were no human subjects in this study. However, the included studies were evaluated for ethical standards with the JBI Checklist. Each of these studies was approved by an ethics committee or institutional review board.

Results
Based on the search strategy protocols, a total of 4,198 potential articles were identi ed 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 in uencing 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 in uenced 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 di cult to manage. 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 HIVpositive women's lives.
Abbreviations: WLH = Women living with HIV 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 nd 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 identi ed 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-con dence as they engaged in their decision-making process. Generally, WLH wanted to make their own reproductive decisions despite the large number of barriers while recognizing they need more facilitators. The women frequently noted spiritual forces protected them, as well as planned their lives. As such, these women felt a strong duty to care for their babies that contributed to increased self-care. The risk of transmitting the infection to a fetus, or their partner, is their most pressing concern[6, 15], and they fear death because they do not want to abandon their children. [91] Spirituality can become an effective coping mechanism for WLH to provide meaning, guidance, support,

Conclusion
Reproductive decision-making is a process that WLH encounter with increasing frequency but limited assistance from family, friends, partners, and clinicians. Decisions regarding reproduction cannot be taken for granted or taken autonomously, instead they should be discussed within the context of a supportive health system. This complexity of the situation for WLH requires an integrated approach with comprehensive multidisciplinary counseling to address reproductive decisions and sexual health, including respecting their individual right to become a mother. The institutional, economic, and social barriers that interfere with discussions about reproduction and sexual health need to be to be addressed to prevent unplanned pregnancies, which represent a psychological and socioeconomical burden.
Furthermore, the attention of clinicians to these discussions is also vital to guiding policies and practices to improve care for WLH. They need to have the ability to speak with knowledgeable clinicians about the risks and responsibilities for planning a pregnancy in the same way as other women without the infection.
A human caring approach to clinical management focused on education and counseling, respect for personal preferences and individual situations, and person-centered care needs to be implemented for WLH. Similar to women without an HIV diagnosis, clinicians need to engage WLH in reproductive decision-making through family planning and discussing contraception options. In addition, clinicians need to be authentically present when caring for WLH, demonstrating compassion and understanding as they ty to minimize the stigma associated with sexual health. Moreover, empowerment strategies that lead to informed decision-making behaviors need to be implemented in clinical practice. Consequently, education and evidence-based clinical practice guidelines are required to deliver integrated, culturally competent, and comprehensive person-centered care to WLH.

Declarations
Ethics approval and consent to participate: An ethics approval was not necessary for this project. All the data obtained from a searched of databases. However, all the included studies were research appropriately approved by an ethics committee.
Consent for publication: This consent is not applicable.
Availability of data and material: The data used and/or analyzed during the current study are available from the corresponding author on reasonable request.
Competing interests: The authors declare that they have no competing interests.