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Table 2 Summary of included studies

From: Motherhood and decision-making among women living with HIV in developed countries: a systematic review with qualitative research synthesisMaternidad y toma de decisiones en mujeres que viven con el VIH en países desarrollados: una revisión sistemática con síntesis de investigación cualitativa

Sample/setting Methodology and methods Main findings
Alvarez-del Arco (2019) 20 WLH, between 18 and 45 years of age (Spain) Qualitative study, design not stated. Data collection: Interviews (open ended). Dates: May and July 2013. Participants resided in Spain but represented Eastern Europe (4), Latin America (6), Spain (9), and Sub-Saharan African (1) The findings were presented as three topics impact of HIV diagnosis, concept of motherhood, and dimensions of motherhood with four dimensions, including motherhood ideal, desire for procreation, the decision of motherhood, experience (or the lack of experience) of motherhood. The authors noted some dimensions 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 Chicago (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) 20 WLH heterosexual 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 and 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 with 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 WLH, ages 18 to 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 WLH, sexually active, ages 18 to 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 to 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, 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 helps WLH 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 to 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 to 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 to 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 to 45, living in New York (United States) Qualitative 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
Toupin et al. (2019) 42 heterosexual WLH, childbearing age (mean 35 years) living in Montreal (Canada) Qualitative study design not stated. Data collection: Semi-structured interviews. Dates: 2004 to 2005 Participants described as African (17), Haitian (12), and French Caucasian (13) The researchers explicated the themes for decision-making of WLH at each stage of motherhood, including during conception (deciding based on the open-mindedness of providers, during pregnancy (managing 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 States), > 18 years old, with at least one child living at home Grounded theory. Data collection: Interviews (in-depth). Dates: Unknown The core category was 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
  1. WLH women living with HIV