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Maternal factors during pregnancy influencing maternal, fetal, and childhood outcomes

• Louis J. Muglia   ORCID: orcid.org/0000-0002-0301-8770 1 , 2 ,
• Katrien Benhalima 3 ,
• Stephen Tong 4 , 5 &
• Susan Ozanne 6  

BMC Medicine volume  20 , Article number:  418 ( 2022 ) Cite this article

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Enhancing pregnancy health is known to improve the mother’s and offspring’s life-long well-being. The maternal environment, encompassing genetic factors, impacts of social determinants, the nutritional/metabolic milieu, and infections and inflammation, have immediate consequences for the in utero development of the fetus and long-term programming into childhood and adulthood. Moreover, adverse pregnancy outcomes such as preterm birth or preeclampsia, often attributed to the maternal environmental factors listed above, have been associated with poor maternal cardiometabolic health after pregnancy. In this BMC Medicine article collection, we explore a broad spectrum of maternal characteristics across pregnancy and postnatal phenotypes, anticipating substantial cross-fertilization of new understanding and shared mechanisms around diverse outcomes. Advances in the ability to leverage ‘omics across different platforms (genome, transcriptome, proteome, metabolome, microbiome, lipidome), large high-dimensional population databases, and unique cohorts are generating exciting new insights: The first articles in this collection highlight the role of placental biomarkers of preterm birth, metabolic influences on fetal and childhood growth, and the impact of common pre-existing maternal disorders, obesity and smoking on pregnancy outcomes, and the child’s health. As the collection grows, we look forward to seeing the connections emerge across maternal, fetal, and childhood outcomes that will foster new insights and preventative strategies for women.

The extraordinary, foundational months of pregnancy are a time of emergence of a new life for the conceptus and remarkable physiological and psychological adaptation by the mother. The orchestration of mutual communication between the mother and fetus is the driver of long-term health. It is shaped primarily by the maternal environment, with its genetic, physiologic, nutritional, inflammatory/infection, and psychological components. It has been repeatedly recognized that the in utero environment programs the fetus for lifelong health—the Barker Hypothesis—and pregnancy complications such as preeclampsia and preterm birth impact maternal cardiovascular health [ 1 , 2 ].

This special collection of articles by BMC Medicine seeks to synthesize information related to maternal and offspring outcomes associated with in utero exposures across pregnancy phenotypes and complications. Among the most common maternal traits that impact multiple aspects of fetal outcomes are maternal undernutrition and, more often, maternal overnutrition/obesity, associated with complications from development in an obesogenic environment and influences of gestational diabetes mellitus. In addition, the mechanisms leading to abnormalities in gestational duration and an increased risk for adverse outcomes such as preterm birth are central research targets [ 3 ]. The growing opportunity to interrogate “big data” with artificial intelligence or machine learning tools will accelerate this research and help to determine pregnancy interventions that are both safe and effective [ 4 , 5 , 6 , 7 ].

The editors believe that providing novel insights on exposures and outcomes across pregnancy phenotypes will be mutually informative as many driving determinants are shared. In this editorial, we will highlight some initial contributions to this collection and the new information that has been revealed.

Towards better health of mother and child—novel insights and potential pathways for intervention

Revealing underlying mechanisms in preterm birth and potential links to polycystic ovary syndrome.

Adverse pregnancy outcomes are common and have generally been refractory to interventions designed to reduce their incidence. Of all obstetric complications, preterm birth towers above nearly all others as the most severe. Affecting 8–10% of all pregnancies, it is depressingly common and can leave the newborn with a lifelong legacy of health deficits [ 8 ]: from subtle decrements in developmental outcomes for those born “late preterm” to profound disabilities for those born “extremely preterm” (cerebral palsy, chronic lung conditions, major learning problems) [ 9 ].

Spontaneous idiopathic preterm birth has been among the greatest challenges. Until now, there are no generally effective therapeutic interventions, and predictive biomarkers, while beginning to emerge, are limited. The lack of mechanistic insight has resulted in preterm birth being a long-standing leading cause of infant mortality and mortality in children under 5 years of age [ 10 ]. However, research of the underlying mechanisms in preterm birth has been greatly accelerated by using hypothesis-free interrogation of large data sets across ‘omics platforms and medical record information using advanced bioinformatic strategies [ 4 , 5 , 6 , 7 ].

As part of this collection, Tiensuu and colleagues [ 11 ] present new data for a candidate biomarker for preterm birth that may also help unravel the underlying mechanisms and is a potential target for interventions. In this study, the investigators evaluated whether placental proteins associated with spontaneous preterm birth can be identified using proteomics. Intriguingly, protein and mRNA levels of alpha-1 antitrypsin (AAT)/SERPINA1 were found to be downregulated on both the maternal and fetal sides of the placenta. This finding served as a basis to investigate whether damaging genetic DNA variations in AAT were also associated with spontaneous preterm birth through whole exome sequencing—and indeed, they were. After revealing this association, the authors performed functional studies, indicating that the downregulation of AAT affects the actin cytoskeletal pathways and extracellular matrix organization.

Beyond identifying relevant biomarkers, there is a strong need for interventions to prevent adverse pregnancy outcomes. The Tiensuu study moves forward with one strong candidate for such an intervention. Moreover, their approach of utilizing multiple association strategies to provide further evidence for a particular finding can be applied across various disease phenotypes.

Major risk factors for preterm birth have long been elucidated [ 8 , 9 ], such as prior preterm birth, early rupture of membranes, or co-existing medical conditions such as polycystic ovary syndrome (PCOS), as reported by others in this special collection [ 12 ]. Rocha and colleagues address an interesting question: for those in their second pregnancy and birth preterm, do risk factors associated with their preterm birth differ depending on whether or not their first infant was born preterm?

To address this question, the authors examined a large retrospective dataset from Brazil representing 1.7 million births [ 13 ]. They focused on women who had a preterm birth in their second pregnancy and split them according to whether their first pregnancy was delivered at full term (> 37 weeks gestation, “incident preterm birth” cohort) or they previously had a preterm birth (< 37 weeks gestation, “recurrent preterm birth” cohort).

Interestingly, the incident but not the recurrent preterm birth cohort had significant associations with household overcrowding, variations in ethnicity (being black, mixed-race, or indigenous had raised risks), being a younger mother (14–19 years), and having had a prior cesarean section, with odds ratios ranging from 1.04 to 1.34. Both cohorts were associated with reduced prenatal visits with higher odds ratios in the incidence preterm birth cohort. Notably, many of these risk factors likely reflect socioeconomic deprivation, stress, low educational attainment, and smoking—established risk factors for preterm birth [ 8 ].

Surprisingly, in both cohorts, being single or a widow conferred a 10–15% reduced risk of preterm birth compared to those who were married or in a civil union. While interesting, this finding is difficult to explain, and we do not suggest encouraging women to be single is a promising public health strategy to reduce preterm birth rates.

In another contribution to this collection, Subramanian and colleagues [ 12 ] present data indicating a convincing link between preterm birth and PCOS, a condition affecting 10% of women. While defined by a varied constellation of signs and symptoms—cysts on the ovary, biochemical or clinical evidence of androgen excess, oligo/anovulation [ 14 ]—PCOS is, at its heart, a metabolic disorder [ 15 ]. As a chronic condition that never retreats, those affected incur the risk of developing metabolic-related conditions as they age, especially diabetes and obesity [ 15 ].

Given PCOS is the most common endocrine disorder among women of reproductive age, it will invariably intersect with many pregnancies. In their retrospective study, Subramanian et al. examined the link between a pre-specified set of serious obstetric complications, including preterm birth, fetal size, mode of birth and stillbirth, and PCOS based on just under 140,000 pregnancies in the UK, of which 27,586 were affected by PCOS. While the lift in preterm birth risk in women affected by PCOS was modest (an 11% relative rise on the adjusted odds ratio), it could be substantiated by further sub-analyses. These findings concur with a recent study in a Swedish population, indicating an apparent doubling in the risk of extreme preterm birth < 28 weeks gestation in women suffering from PCOS and, thus, an even larger effect size [ 16 ].

But how is the link between PCOS and preterm birth explained? The authors muse over potential causes such as a shared genetic polymorphism between preterm birth and PCOS or a dysregulated hypothalamic-pituitary-adrenal axis tipping off a biological cascade that ends in spontaneous preterm birth. However, as the team did not adjust for important pregnancy-induced complications strongly associated with both PCOS and preterm birth (such as gestational diabetes and hypertensive disorders), more likely, the presence of such complications led to the excess in preterm births. They also found PCOS associated with a modestly increased risk of a cesarean section but no apparent link with stillbirth. While this finding seems reassuring, the study was likely underpowered to explore this outcome.

Finally, there may be a fascinating biological message buried within their apparently plain finding that PCOS is not associated with the birth of babies that are either small or large for gestational age. It suggests placental function may be surprisingly resistant to the multiple metabolic perturbations occurring within the mother, which would be a reassuring finding.

The impact of environmental exposures—metabolic in utero environment, obesity, and smoking during pregnancy

In addition to adverse obstetric outcomes such as preterm birth and associated risk factors, obesity during pregnancy is of great concern. Obesity rates continue to increase across the globe in all age groups in the population, including women of childbearing age [ 17 ]. Consequently, in a growing number of countries, over half of the pregnant women are now either obese or overweight.

Obesity is associated with immediate detrimental consequences for the mother and baby, including increased risk of gestational diabetes, preeclampsia, and the need for a caesarian section [ 18 ]. In addition, it is established that children born to obese women are at increased risk of becoming obese and developing type 2 diabetes and cardiovascular diseases. Furthermore, evidence suggests that at least part of this transmission of poor cardio-metabolic health from mother to child is driven by non-genetic factors. Notably, the latter provides an opportunity for early intervention before disease pathology is established [ 19 ].

Currently, it is not known which children born to obese mothers will follow a higher-than-normal body mass index growth trajectory and become overweight and ultimately obese. In this article collection, Gomes and colleagues address this knowledge deficit using the mother-child cohort study Programming of Enhanced Adiposity Risk in Childhood–Early Screening (PEACHES), which comprised 1671 mothers with pre-conception obesity and without (controls) and their offspring. They identified a “high-risk” subpopulation of offspring born to obese mothers susceptible to early upper deviations from healthy weight gain trajectories present within the first few months of life and progressing to overweight/obesity by 5 years of age. Hence, they established a novel sequential prediction system to allow early-risk stratification and re-evaluation to prevent a “higher-than-normal BMI growth pattern” at a subclinical stage preceding overweight. Maternal smoking and excessive gestational weight gain were the strongest predictors of a higher-than-normal BMI growth pattern by 3 months of age. Importantly, they validated these findings in the independent Perinatal Prevention of Obesity (PEPO) cohort, comprising 11,730 mother-child pairs recruited around 6 years of age. These findings take us a step closer to developing cost-effective and personalized advice and measures, counteracting the risk of early excess weight gain and ultimately preventing childhood obesity.

Several articles in this collection have focused on the metabolic environment in utero and the impact of environmental exposures in pregnancy on the mother’s and offspring’s long-term metabolic health. For example, the large mother-offspring Asian cohort study Growing Up in Singapore Towards healthy Outcomes (GUSTO), consisting of 1247 women from Singapore, studied the changes of 480 lipid species in the plasma of women during pregnancy (antenatal vs postnatal) and their offspring during development (cord blood and 6-year-old child plasma) [ 20 ]. This study demonstrated that around 36% of the profiled lipids increased in circulation during pregnancy, with phosphatidylethanolamine levels changing the most compared to pre-pregnancy. Compared to the gestating mother, the cord blood showed a lower concentration of most lipids, and a higher concentration of lysophospholipids, suggesting the specific developmental needs of the growing fetus. Pre-pregnancy BMI was specifically associated with a decrease in the levels of phospholipids, sphingomyelin, and several triacylglycerol species in pregnancy, highlighting the importance of managing obesity before pregnancy. Notably, lipid species associated with the child’s BMI were very similar to those associated with the adult’s BMI. This overlapping effect of adiposity, as observed in 6-year-old children and postnatal mothers in this study, may be influenced by the similarities in the diet apart from other factors such as genetics and shared lifestyle. The findings of this study were validated in an independent Caucasian birth cohort and provide an important resource for future research targeting early nutritional interventions to benefit maternal and child metabolic health.

Also focusing on the influencing factors on metabolic health, a Swedish nationwide register-based study investigated the association between maternal smoking during pregnancy and type 1 diabetes in the offspring [ 21 ]. The cohort consisted of nearly three million children born between the years 1983 and 2014, with follow-up until 2020. In addition, a nested case-control study was performed comparing children with type 1 diabetes to their age-matched siblings. A total of 18,617 children developed type 1 diabetes. Interestingly, maternal smoking during pregnancy was associated with a 22% lower risk of offspring type 1 diabetes in the full cohort. Although these data suggest a protective effect of maternal smoking on the risk for offspring to develop type 1 diabetes, mechanistic studies are needed to elucidate the underlying pathways behind this link. Despite these findings, we emphasize that smoking during pregnancy should be strongly advised against since it has severe effects on fetal and childhood health [ 21 ].

For example, a longitudinal study by Howell and colleagues in this collection provides evidence that maternal smoking is also associated with shorter offspring telomere length [ 22 ]. Acting as a mitotic clock to the cell, these hexameric repeat sequences found at the ends of chromosomes shorten with cell division [ 23 ] and, as shown recently, as a consequence of oxidative damage. Therefore, they represent good biomarkers of cellular aging and also exposure to oxidative damage [ 23 ]. Accelerated aging has been suggested as one potential mechanism linking suboptimal in utero exposures to long-term health. However, most evidence has primarily come from studies of suboptimal in utero nutritional exposures [ 24 ].

Howell et al. demonstrated that maternal prenatal smoking predicted greater telomere shortening by measuring the telomere length in buccal cells in infants from 4 to 18 months of age. They also showed that the relationship between maternal prenatal smoking and offspring attention-deficit/hyperactivity disorder (ADHD) was modulated by telomere length. Paradoxically, ADHD was associated with less telomere attrition for children whose mothers smoked. It is not known if these differences in buccal cell telomere length are reflective of the differences in other cell types, such as those in the brain. However, if similar differences are also present in brain tissue, this finding could indicate delayed maturation of cortical cells, which could provide a mechanistic link to ADHD.

Conclusions

As demonstrated by the initial series of articles published in this collection, the ability to utilize now more refined technologies to elucidate the underlying mechanisms that drive adverse pregnancy outcomes, such as preterm birth and metabolic risks for both the mother and fetus, has revealed new insights and potential pathways for intervention. Moreover, a deeper understanding of how these diverse outcomes are influenced by maternal co-morbidities such as maternal PCOS or smoking status is emerging.

However, to have a real impact on public health, these robust, reliable data and their implications need to be implemented in physician practice and be used for therapy development for a historically under-explored and invested group—pregnant women.

It will be essential to figure out how these findings can be used to tackle challenges related to lifestyle factors such as maternal obesity or smoking that have been refractory to preventive strategies and interventions. As the recognition of these influencing factors on maternal, fetal, and childhood outcomes across the lifespan emerges, we are encouraged that it will ultimately benefit the mother’s and child’s health.

We have enjoyed learning from this initial set of articles and look forward to future contributions to this collection.

Availability of data and materials

All data discussed in this editorial are included in this published article.

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Acknowledgements

We thank Dr. Susanne Kröncke for her outstanding editorial support.

KB is the recipient of a “Fundamenteel Klinisch Navorserschap FWO Vlaanderen.”

None of the authors received funding for this editorial.

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Louis J. Muglia

Cincinnati Children’s Hospital Medical Center, Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA

University Hospital Gasthuisberg, KU Leuven, Leuven, Belgium

Katrien Benhalima

University of Melbourne, Melbourne, Australia

Stephen Tong

Mercy Perinatal, Heidelberg, Australia

University of Cambridge, Cambridge, UK

Susan Ozanne

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Correspondence to Louis J. Muglia .

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Muglia, L.J., Benhalima, K., Tong, S. et al. Maternal factors during pregnancy influencing maternal, fetal, and childhood outcomes. BMC Med 20 , 418 (2022). https://doi.org/10.1186/s12916-022-02632-6

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Volume 14 Supplement 3

Proceedings from the Global Forum on Bioethics in Research (GFBR)’s “Ethics of Research in Pregnancy” meeting

• Introduction
• Open access
• Published: 14 December 2017

Research with pregnant women: a call to action

• Margaret Olivia Little 1 &
• Marisha N. Wickremsinhe 1  

Reproductive Health volume  14 , Article number:  156 ( 2017 ) Cite this article

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Despite a global need for the use of medication during pregnancy, the medical research community lacks robust evidence for safety and efficacy of treatments and preventives often taken by pregnant women. Given the biological differences between pregnant women and the rest of the population, the need to gather data on the ways in which medications behave in the pregnant body is critical to the health of pregnant women and their offspring. Three ethical reasons are central to this need: 1. Pregnant women deserve access to effective treatment, 2. Pregnant women deserve access to safe treatment, and 3. Pregnant women deserve equitable access to trials carrying the prospect of direct benefit. In this paper, we introduce and frame this Supplement Issue, which presents important conference proceedings of the 2016 Global Forum on Bioethics in Research meeting held in Buenos Aires, Argentina, on the 3rd and 4th of November.

The need to pursue research with pregnant women

Globally, a significant proportion of pregnancies are complicated by serious medical illness requiring treatment [ 1 ]. Despite an assumption—or perhaps a wish—that pregnancy occurs only against a backdrop of “perfect health,” women often confront illness in the face of pregnancy or pregnancy in the face of illness. A multitude of examples come to mind: a pregnant woman contracts malaria, a woman with diabetes becomes pregnant, a woman with a persistent psychiatric illness that is well-controlled by medication wants to have a child, or perhaps a pregnant woman is diagnosed with HIV at her first antenatal care visit. In each of these cases, the necessity of medication use during pregnancy to treat or manage chronic disease or new infection is unquestionable.

In fact, a significant proportion of pregnant women take medication at some point during their pregnancy, if not throughout the course of their pregnancy. In the United States, as many as 70% of women took at least one prescription medication during pregnancy [ 2 ]. Certain disease states make this need vivid. For example, in the global context of HIV/AIDS, medication use during pregnancy is essential: approximately 1.5 million women living with HIV give birth across the world each year [ 3 ] and use antiretroviral medicines to manage their illness and prevent mother-to-child transmission of the infection.

To understand the significance of the burden of disease and subsequent use of medications during pregnancy, however, we must acknowledge that medications behave differently in the pregnant body [ 4 ]. Just as treating children as merely miniature adults in the context of medical science is irresponsible, so, too, is treating pregnant women as merely women with big bellies [ 1 ]. The pregnant body can act as a “wild card” when it comes to metabolizing medications—during pregnancy, certain medications dosed for non-pregnant adults can clear the body too quickly to offer therapeutic benefit [ 4 ]. Others may specifically target the developing fetus, causing harm, and fail to treat the pregnant woman’s illness at all.

But we lack robust evidence to assess the ways in which medications are metabolized by the pregnant body, the extent to which medications treat the woman’s health condition, and the degree to which medications affect the fetus. Indeed, pregnant women have been called the “last true therapeutic orphan” [ 5 ]. Against this backdrop, the reasons to pursue research with pregnant women are not just medical, they are ethical.

Three ethical reasons for pursuing research with pregnant women

There are three central ethical reasons to pursue research with pregnant women: 1. Pregnant women deserve access to effective treatment, 2. Pregnant women deserve access to safe treatment, and 3. Pregnant women deserve equitable access to treatment.

Firstly, pregnant women deserve access to effective treatments and preventives [ 6 ]. Failure to properly collect evidence in the clinical research setting leads to uncertainty in the clinical care setting. Without robust knowledge of medication efficacy in pregnancy, pregnant women and their providers are forced to make decisions on the basis of substandard data. In some cases, treatment regimens are determined by data collected from extensive registries following incidental exposure; in other cases, treatment regimens are determined by past anecdotal evidence. Treating without more complete evidence can lead to sub-therapeutic dosing of medications in pregnant women, wherein the disease progresses unchecked because the pregnant body metabolizes the compound too quickly. Clearly, pregnant women deserve medical care to effectively treat their medical conditions, and research is needed to ensure this.

Secondly, pregnant women and the offspring they carry deserve access to safe treatments and preventives [ 6 ]. The definitive case to exemplify the consequences of failing to conduct fetal safety research, well-known to most, is thalidomide. Improperly researched, thalidomide was used widely in pregnancy without knowledge of its detrimental effects on the fetus [ 7 ]. Without proper data, we not only risk failing to effectively treat the pregnant woman’s illness—we risk failing to protect the fetus from harm. At present, the lack of research in pregnancy results in a shift of risk from the controlled, highly regulated context of a research trial to the unmonitored, highly variable context of the clinic [ 8 ]. Such a transfer of risk ultimately jeopardizes fetal safety for a far greater proportion of pregnancies than does conducting necessary research in the context of a small and rigorously monitored safety trial.

Thirdly, pregnant women deserve equitable access to research trials that carry the “prospect of direct benefit”, i.e. later-stage trials that involve a potential for therapeutic benefit to participants. Depending on the disease state in question, such trials can be important sources of medical benefit, and sometimes—as in emergency situations—the only source. Yet pregnant women are often summarily excluded, without justification, from such research [ 6 ]. This exclusion prevents pregnant women and their offspring from accessing an intervention that may be critical for their health. Not only should we provide effective treatment to women, and not only should we adequately assesses fetal safety of medications; we should ensure as a matter of justice that pregnant women are offered equitable opportunity to participate in such trials [ 6 ].

The way forward

Research with pregnant women certainly carries special moral complexities. Such research, after all, involves two intertwined entities—the woman, who can consent to the risks of research, and the future offspring she carries, which cannot. The importance of establishing independent protections for that future offspring is a consensus issue [ 8 ]. The vast majority of research that can (and should) include pregnant women involves pregnancies that continue to term, and that hence would implicate a future child whose health, all agree, is important. That said, these protections, centered around the presence of the fetus, cannot displace the importance of the pregnant woman’s specific health needs. Women do not forfeit all rights of access to important medical benefit just because they are continuing a pregnancy [ 6 ]. Clearly, then, research with pregnant women requires both protecting the future child while respecting the pregnant woman as autonomous in her own right.

Increasingly, key organizations—including the Pan American Health Organization, Council for International Organizations of Medical Sciences, American College of Obstetrics and Gynecology, and the Office of Research on Women’s Health of the National Institutes of Health—have recognized the scientific and ethical importance of including pregnant women in clinical research [ 9 , 10 , 11 , 12 ]. These organizations encourage a paradigm shift from categorical exclusion to equitable inclusion in the research agenda, while also acknowledging that research with pregnant women poses unique ethical complexities because of risks and potential benefits to future offspring who cannot consent for themselves. They urge a shift in mindset from protecting pregnant women and their future offspring not from research, but through research.

We must motivate a collective move from the presumption of exclusion to the presumption of inclusion in the research agenda [ 4 ]. We should ask not “What is the risk of doing research with pregnant women?”, but “What is the risk of not doing this research?”. The current culture of exclusion, fed by misunderstandings and myths, remains a critical barrier to the equitable inclusion of pregnant women in research, not only to address the woman’s own health needs or to ensure the safety of the fetus, but as a matter of justice. Justice demands that we find the moral courage to commit to the very premise of clinical research itself: to seek robust evidence in the face of uncertainty, rather than forcing the public and their healthcare providers to guess.

Galvanizing the research community

In this Supplement Issue, we aim to help galvanize the research community to take up this critical issue and work toward the ethical inclusion of pregnant women in the research agenda. The articles in this Supplement are adapted from presentations given at the 2016 Global Forum on Bioethics in Research (GFBR) meeting, “Ethics of research in pregnancy”, which took place in Buenos Aires, Argentina, on the 3rd and 4th of November. The GFBR, supported by the Wellcome Trust, the Bill & Melinda Gates Foundation, the National Institutes of Health, and the UK Medical Research Council, hosts annual meetings on key bioethics topics.

The issue opens with two foundational pieces. The first outlines the global burden of disease in pregnancy, originally a background report for conference participants; the second explores the regulatory landscape of research with pregnant women. The issue then moves to series of eight case studies that exemplify ethical challenges of including pregnant women in research, drawing from a diversity of countries, disease states, and study designs. The first two focus on diabetes-related interventions. They are followed by two cases that concern the use of pre-exposure prophylaxis for HIV during pregnancy. The next three case studies look at issues specific to research on obstetric conditions, and the last is a case centered around one pregnant woman during the Ebola epidemic, highlighting the very real, very human costs of the exclusion of pregnant women from research. A longer form article then provides a deep dive, from the perspective of the Ethics Review Committee of the World Health Organization, into the systematic exclusion of pregnant women from clinical trials during the Ebola epidemic. The final article offers a brief summary of the 2016 GFBR conference.

Ultimately, we hope this Supplement Issue presents a “call to action”: we ask the international research community to ensure, as a matter of social justice, that pregnant women are responsibly, ethically, and equitably included in clinical research endeavors moving forward.

Abbreviations

Global Forum on Research in Bioethics

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Acknowledgements

The authors would like to acknowledge members of the PHASES and PREVENT grant teams, especially Annie Lyerly and Ruth Faden.

The authors are supported by two grants focused on research with pregnant women including the Pregnancy and HIV/AIDS: Seeking Equitable Study (PHASES) grant from the National Institutes of Health (R01 AI108368-01A1) and the Pregnancy Research Ethics for Vaccines, Epidemics, and New Technologies (PREVENT) grant from the Wellcome Trust (203,160/Z/16/Z). The publication cost of this article was funded by the Wellcome Trust.

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About this supplement

This article has been published as part of Reproductive Health Volume 14 Supplement 3, 2017: Proceedings from the Global Forum on Bioethics in Research (GFBR)‘s “Ethics of Research in Pregnancy” meeting. The full contents of the supplement are available online at https://reproductive-health-journal.biomedcentral.com/articles/supplements/volume-14-supplement-3 .

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Women’s experiences of social support during pregnancy: a qualitative systematic review

• Mona Al-Mutawtah 1 , 2 ,
• Emma Campbell 1 ,
• Hans-Peter Kubis 1 &
• Mihela Erjavec 1  

BMC Pregnancy and Childbirth volume  23 , Article number:  782 ( 2023 ) Cite this article

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Social support during pregnancy can alleviate emotional and physical pressures, improving the well-being of mother and child. Understanding women's lived experiences and perceptions of social support during pregnancy is imperative to better support women. This systematic review explores and synthesises the qualitative research on women's experiences of social support during pregnancy.

Databases PubMed, CINAHL, MEDLINE, APA PsycInfo and Scopus were searched with no year limit. Eligible studies included pregnant women or women who were up to one year postpartum and were assessed on their experiences of social support during pregnancy. The data were synthesised using the thematic synthesis approach.

Fourteen studies were included with data from 571 participating women across ten countries; two studies used focus groups, and 12 used interviews to collect their data. Four main themes were developed ('a variety of emotional support', 'tangible and intangible instrumental support', 'traditional rituals and spiritual support', and 'the all-encompassing natal home'), and six sub-themes ('female network connections', 'care and affection from the husband', 'dissatisfaction with relationships', 'financial support from the husband and family', 'practical support from family and friends', 'health information support').

Conclusions

This systematic review sheds light on women’s experiences of social support during pregnancy. The results indicate a broad variety of emotional support experienced and valued by pregnant women from different sources. Additionally, women expressed satisfaction and dissatisfaction with tangible and intangible support forms. It was also highlighted that spirituality played an essential role in reducing stress and offering coping mechanisms for some, whereas spirituality increased stress levels for others.

Peer Review reports

For some women, pregnancy is considered a time of joy, but it also involves many well-being, social, and physical changes (e.g., emotional, physiological, and relational changes). These changes during pregnancy can present many challenges [ 1 , 2 , 3 ]. For example, Yin et al. [ 4 ] conducted a systematic review to investigate the prevalence of antenatal depression during pregnancy across several continents. The results showed that the prevalence rates of any antenatal depression were 20.7%, and 15% of pregnant women experienced major antenatal depression, which is higher than general population 14.5% [ 5 ]. Other challenges reported in the existing literature are related to unplanned pregnancy, mood instability, physical health problems, financial problems, and a lack of social support during pregnancy [ 6 , 7 , 8 , 9 ]. For example, social support during pregnancy reportedly helps to alleviate the pressures of the pregnant women’s emotional and physical changes, and suggests to improve the mother and child’s well-being [ 10 , 11 , 12 ].

The conceptualisation of social support

There is a wide range of literature connected to social support from many perspectives and disciplines over many decades of research [ 13 , 14 , 15 , 16 ]. Social support has broadly been outlined as a complex, multi-dimensional concept that can be defined as assistance provided by a person’s social network and involves the provision of emotional and physical support [ 16 , 17 ]. However, from a traditional psychological perspective, Cohen and Wills [ 13 ] describe social support as support from social networks that can influence health through two pathways (direct effects and stress buffering). The direct-effect hypothesis suggests that social support can improve health regardless of whether the environment is stressful or not [ 18 ]. Further, it contributes to a sense of belonging and stability, resulting in improved self-esteem and reduced stress and mental health disorders [ 19 ]. Alternatively, the stress-buffering hypothesis posits that support may buffer against unhealthy reactions and provide the individual with access to additional resources that will enhance their capacity to cope with stressful events in two ways:

Perceived support can prevent a psychological or physiological stress reaction from arising when a potentially stressful event occurs. Consequently, perceived support may increase the perception that individuals can cope with negative events.

Perceived social support can intervene between the event of a stress reaction and the onset of a pathological process by reducing the stress reaction [ 19 , 20 ].

Social support during pregnancy

Kroelinger and Oths [ 21 ] explored the role of social support in wanted and unwanted pregnancies. The results indicated that unwanted pregnancies are strongly influenced by factors such as support from partners, the partner’s stability and status, and their feelings towards pregnancy. Therefore, Kroelinger and Oths highlights the potential role of a partner’s social support during pregnancy and shows how the lack of a partner’s support, particularly their emotional and practical support, can negatively affect women’s experiences by leading them to experience the pregnancy as unwanted. However, although, the relationship between a partner’s social support and whether a pregnancy is desirable seems simple, a person may decide that they want the pregnancy while it progresses based on certain discoveries, experiences, or events that are unrelated to the social support they receive from their partner. For example, parental social support can buffer the negative impacts of an unsupportive partner [ 22 ].

Likewise, Rini et al. [ 23 ] aimed to assess their experiences of the quality and quantity of social support they received from their partners, referred to as social support effectiveness (SSE). It focused on three functional types of social support: practical, emotional, and informational support. Greater SSE from partners predicted less anxiety during the second to third trimesters [ 23 ]. In addition, a recent systematic review of social support during pregnancy sought to investigate the relationship between social support and mental illness during pregnancy. A significant positive correlation between low social support and antenatal depression (14/15 papers), antenatal anxiety (6/8 papers), and self-harm (3/4 papers) was found [ 6 ]. Although these studies stressed that social support directly affects mental health, the pregnant women’s feelings, attitudes, perspectives, and past pregnancy experiences may mediate the relationship between a partner’s social support and the pregnant person’s anxiety [ 24 ]. This aligns with several studies that showed that those who perceive adequate social support during pregnancy are less likely to report stress, distress, or symptoms associated with anxiety and depression [ 25 , 26 , 27 ].

The above evidence demonstrates that social support may influence women’s experiences during pregnancy. However, more recent research has also incorporated contextual and situational factors associated with the COVID-19 pandemic. Since December 2019, the COVID-19 pandemic has affected almost all countries and territories and cases of COVID-19 increased exponentially worldwide [ 28 ]. Recent research by Meaney et al. [ 29 ] aimed to assess pregnant women’s perceptions and satisfaction with social support from an online survey conducted with 573 pregnant women during the pandemic from the US, Ireland, and the UK. The authors illustrated that a reduction in perceived social support that resulted from the lack of access to antenatal care during the COVID-19 pandemic increased negative feelings such as sadness, anxiety, and loneliness during pregnancy for these women. Although this kind of research can help healthcare providers determine strategies to help women during stressful times, further research is required to identify the types of social support (e.g., emotional, instrumental, etc.) that were most affected by the pandemic.

In conclusion, the existing literature affirms that social support during pregnancy plays a role in women’s well-being and physical health (amongst other areas). However, most of these studies primarily employed quantitative approaches [ 21 , 23 , 30 , 31 , 32 ]. This indicates that the existing studies would have been unable to capture any wider contextual factors which may also shape women’s experiences, the emotional aspects of social support, or experiential aspects of the topic [ 33 ]. Therefore, qualitative synthesis can provide an in-depth understanding of precious women’s experiences and perceptions of social support during pregnancy.

Overall aim

This systematic review sought to analyse and synthesise all available qualitative evidence about women’s experiences of social support during pregnancy.

Research question

According to Stern et al. [ 34 ] and Butler et al. [ 35 ], to formulate a good question, the four elements of the PICo (with a lowercase o) (as P referred to participants; I referred to phenomenon of interest; Co referred to context) mnemonic framework must be incorporated to identify the keywords to use in the review question. Table 1 outlines how the review research question was formulated using this framework.

Therefore, the research question developed via the PICo framework [ 35 ] was: How do women experience the social support provided to them during pregnancy?

Search strategy

An extensive literature search was conducted using five electronic databases: PubMed, CINAHL Plus with full text, MEDLINE, APA PsycInfo, and Scopus between May 2022- February 2023. Shea et al. [ 49 ] notes that at least two databases should be searched for systematic reviews and meta-analyses; however, utilising more databases can yield more comprehensive and accurate results.

In addition, the Boolean connectors AND and OR were utilised to combine the following MeSH and search terms: “qualitative research”, “qualitative”, “qualitative method”, “interview”, “focus group”, “social support”, “psychosocial support systems”, “emotional support”, “family support”, “practical support”, “information support”, “pregnancy”, “pregnant”. Furthermore, following Butler et al. [ 35 ], a manual screening of the reference lists of all included studies was performed to identify additional potential studies.

In addition, the Enhancing the Transparency of the Reported Comprehensive Qualitative Research Statement (ENTREQ), was used to increase transparency (see Additional file 1 ) [ 50 ].

Inclusion and exclusion criteria

The included studies met the following criteria:

Original qualitative studies published in English-language peer-reviewed journals with no year limit.

The participants were mainly adult women over 18, although two papers included two pregnant women aged 17 in their samples.

The participants were pregnant women or women who had given birth and were assessed on their experience of social support during pregnancy.

The participants were pregnant women that were not specifically recruited because of pre-existing health issues or mental illness, as these conditions may affect their social support experiences.

The exclusion criteria:

Pregnant under age 17.

Specific sub-groups of pregnant women (e.g., pregnant with HIV, diabetes, intellectual disabilities and visually impaired).

Social support in breastfeeding.

Unpublished and grey studies.

Theses and secondary research sources (e.g., reviews).

Data extraction

As part of the review process, researchers can extract descriptive data (e.g., details of setting or context) and outcome data (e.g., results or conclusions) from the selected studies [ 51 ]. The critical information needed to extract the context and participants are the study setting, country, population, and participant characteristics. The information needed to describe the research design and methods is the methods for data collection, analysis, and findings [ 50 , 51 ]. The information we included in Table 2 offers an overview of this data about the studies included in this review. A total of 14 international studies spanning 1990 to 2022 have been selected, from the United States ( n  = 5), Canada ( n  = 1), Bangladesh ( n  = 1), Indonesia ( n  = 1), Iran ( n  = 1), Pakistan ( n  = 1), India ( n  = 1), Zambia ( n  = 1), Nigeria ( n  = 1) and the UK ( n  = 1). In total, 571 adult women participated; two studies used focus groups and 12 used interviews to collect their data.

Quality appraisal

A quality assessment of the studies included was conducted using the Critical Appraisal Skills Programme for Qualitative Studies Checklist (CASP). The CASP tool is endorsed by both Cochrane and the World Health Organization for the qualitative synthesis of evidence [ 61 ]. According to Butler et al. [ 35 ], the scoring system for the answers to each question was Yes = 1, Can’t tell = 0.5, and No = 0 points; high-quality papers earned 9–10 points, moderate-quality papers, 7.5–9, and low-quality papers, less than 7.5. The first author (MA) was the first appraiser and a second independent reviewer (MP) evaluated five randomised studies to verify the robustness of the process [ 62 ]. Next, the results were compared, and the reviewers’ assessments were found to be similar across the sample studies. Table 2 summarises the results of the critical appraisal.

Data and thematic synthesis

Thematic synthesis, developed by Thomas and Harden [ 63 ], was used to generate new insights from the primary studies. This approach consists of three stages: coding the text, developing descriptive themes, and generating analytical themes. This method provides an explicit process for reducing qualitative data by utilising different reporting styles, such as thin descriptions and multiple quotations [ 62 , 64 ]. Each article’s results section was stored on a Word file and manually analysed using free line-by-line analysis. Then, these free codes were organised into related areas to construct descriptive themes, and, ultimately, these were developed into analytical themes [ 65 ]. The coding process was conducted inductively, and all of the preliminary codes and the descriptive and analytical themes were discussed and refined by the independent reviewer (EC), between July and September 2022. The themes were also further discussed under supervision for expert supervisory input, review, and iterative development (ME, PH, & EC). This process supported the quality of the theme generation. After this iterative process, four main themes and six sub-themes were developed from 126 codes.

Search outcome

A total of 1,597 articles were identified by the initial search. After 107 duplicates and 148 unsuitable studies were removed, 762 titles and abstracts were screened and a further 652 were excluded. The full text of 110 articles was retrieved and screened by the first author for eligibility and 99 articles did not meet the inclusion criteria. After reviewing the reference lists of the remaining studies, two additional studies that met the inclusion criteria were identified. One final study was found while writing the first draft that met the inclusion criteria. Thus, a total of 14 qualitative studies were reviewed with the research teams, who decided to include all 14 in this systematic review. The PRISMA Flow Diagram shows a detailed description of the study selection process (Fig.  1 ).

PRISMA diagram outlining the search process

Results of the thematic synthesis

The four main themes (see Fig.  2 ) generated through the thematic synthesis are “a variety of emotional support”, “tangible and intangible instrumental support”, “traditional rituals and spiritual support”, and “the all-encompassing natal home”. Each of the main themes and sub-themes is discussed below in more detail.

Analytical themes

A variety of emotional support

This main theme describes women’s experiences of emotional support during pregnancy. The data from the included papers illustrated that the participants experienced increased emotional support during pregnancy from their female networks and marital relationships [ 10 , 36 , 38 , 40 , 42 , 43 , 44 , 45 , 46 , 47 , 48 ]. For some, the experience of emotional support existed across a variety, including some women who reported dissatisfaction.

Female network connections

This sub-theme offers insight into a range of sources from which the women had previously gained emotional support during pregnancy. The participants highlighted that they gained emotional support through their connections with other females within their social networks [ 10 , 36 , 38 , 39 , 40 , 46 ]. Female emotional support could be afforded by family members (e.g., mothers, grandmothers, sisters, or sisters-in-law) or other female friends and neighbours. Pregnant women described emotional support as the act of women expressing care, sharing, and expressing feelings and supportive words, and listening to them. Some women also referenced how their mothers offered emotional support during the perinatal period and how they perceived this support as essential throughout their pregnancy.

“There are enough people around me to talk to and support, (but) mainly I would tell my mother about everything. She has been very supportive throughout” [ 46 ] .

“Sister-in-law told me: ‘Do not get afraid, nothing will happen,’ when I felt the pain, she told me, ‘Do not worry, nothing will happen’” [ 10 ] .

Moreover, some women mentioned that during the COVID-19 pandemic, when social restrictions were in place, receiving gifts from loved ones expressed love and care between the female relatives and friends and the pregnant women.

“Due to social restrictions, Kelly’s mother and sisters sent a stroller and a car seat to celebrate her pregnancy” [ 36 ] .

In addition to receiving gifts during Covid-19, some women revealed that connecting via social media with both pregnant and non-pregnant friends helped them to alleviate their stress and ensured that they were not alone during this challenging time.

“Cause like my husband was great support too, but to communicate with someone who is more in your shoes is helpful” [ 36 ] .

The above shows how the women’s connections with others offered a variety of emotional support both before and during the Covid-19 pandemic.

Care and affection from the husband/ partner

This sub-theme outlines a range of emotional support that the women experienced from their husband or partner during pregnancy. This was sometimes described as how their husband’s paid attention to them, encouraged them with supportive words, and allowed them space to discuss their concerns of the pregnancy [ 36 , 37 , 40 , 41 , 42 , 44 , 45 , 47 ].

“I feel lucky that I have somebody that’s willing to let me go take a bath and not be consumed in playing a video game or something. He was always listening to what I needed” [ 41 ] .

In addition, this shows that some husbands met women’s needs when they were patient during pregnancy, avoiding any conflict or arguments [ 43 ]. Meanwhile, husbands prevented their pregnant wives from having to do hard manual labour, such as working in a factory, as an expression of affection and care [ 45 ]. Care can also be exemplified through the husband taking care of their wives’ diets.

“My husband is so loving and caring; he takes care for my diet, he brings me ½ kg milk and fruits on daily basis” [ 44 ] .

Dissatisfaction with relationships

This sub-theme gives insights into the other end of the spectrum, showing how some women experienced a lack of emotional support during pregnancy (highlighted in 6 of the 14 studies included) [ 38 , 39 , 40 , 44 , 47 , 48 ]. For example, some women discussed how their husbands or partners were less caring and did not focus on their health or the health of their babies. There was also dissatisfaction when their husbands did not understand any emotional changes that they may have experienced.

“My husband does not ask me what the doctor said about me and baby’s condition; when I come back from the doctor’s clinic, he is careless” [ 44 ] .

Furthermore, women without close family and friends or who live far from them described themselves as lonely or helpless [ 38 , 39 , 44 , 47 ].

“I know almost no one here. I met a woman, but she moved, and now there’s no one” [ 38 ] .

Tangible and intangible instrumental support

This main theme illustrates a range of instrumental social support that the women experienced during pregnancy. As part of this theme, tangible support refers to material aids, e.g., the provision of money or goods and behavioural acts, such as helping with household chores [ 18 , 66 ]. Alternatively, intangible support describes directive guidance, such as information, advice, constructive feedback, and affirmation about the women’s health during pregnancy [ 67 ]. The first and second subthemes, “financial support from the husband and family” and “practical support from family and friends” relate to tangible support, and the third, “health information support”, to intangible support.

Financial support from the husband and family

This sub-theme describes how some of the participants appeared to be satisfied with their financial situation and the financial support they received from their husbands or families. However, this was not true of all women; some were dissatisfied with the financial support available to them. The source of financial support varied but included the participants’ husbands and parents and grandparents [ 10 , 37 , 40 , 42 , 44 , 48 ]. One of the participants expressed how her husband’s financial support uplifts her mood.

“I want him to buy baby items for the baby or he gives me money to buy. This makes me feel good because it shows that he is concerned about my situation” [ 37 ] .

Practical support from family and friends

For this sub-theme, the women’s husbands and in-laws were referred to as sources of practical help. Some women also mentioned their mothers and friends, although the participants rarely asked them for practical support [ 10 , 36 , 37 , 38 , 39 , 43 , 44 , 45 , 46 ]. Forms of practical support included helping with household chores, cooking, childcare, shopping, and taking the pregnant person to their antenatal appointments. Women perceived their husbands as providers of many aspects of practical support during pregnancy, particularly assisting with daily housework, taking them to natal clinics, and providing childcare for their children [ 10 , 37 , 45 , 46 ]. These tasks were also mentioned in connection to other family members, such as the women’s mothers, and friends.

“My husband used to help me with things I could not do. For example, carrying water for cows” [ 10 ] .

“When I was vomiting for the first few months, three different friends used to cook different dishes for me every day; they looked after me so well” [ 46 ].

Furthermore, some participants highlighted how their family and friends provided practical support during the COVID-19 pandemic. They talked about how their loved ones helped them with grocery shop and run errands.

“They’ll call and be like, ‘Do you need me to get you anything? I’m at the store, that way you don’t have to go out” [ 36 ].

Health information support

This sub-theme provides insight into how healthcare professionals were considered sources of information and advice, in addition to people such as mothers, friends, and pregnancy group members. This included positive feedback to normalise the pregnant person’s experience, information about the foetus’s health condition, nutrition advice and information about delivery [ 10 , 36 , 38 , 39 , 40 , 45 , 46 , 48 ].

Some participants never mentioned healthcare providers as routine sources of information support but occasionally referred to them when describing acute problems related to pregnancy, the health of the foetus, or delivery information [ 40 , 45 , 46 ]. Other women, especially mothers, were routine sources of information and advice.

“My mother had 11 children, out of which seven survive… therefore she gave all advice (during pregnancy). And I followed her advice” [ 46 ] .

During the Covid-19 pandemic, some pregnant women faced a lack of informational support from healthcare providers about the Covid-19 virus and lockdown regulations. This led them to rely upon their pregnancy group peers to discuss concerns online through social media. For example, Charvat et al. [ 36 ] referred to the following quotes by two participants:

“They don’t really tell me [anything]. And [my obstetrician] makes me feel comfortable as he tells me not to worry. He says I’m not high-risk, etc. But no, my OB doesn’t talk much about the actual virus.”

These examples give an overview of the different forms and sources of health information support in the context of the Covid-19 pandemic and beyond.

Traditional rituals and spiritual support

This main theme refers to any culturally specific support (i.e., to avoid certain types of foods or exercises and to go out at noon) or any cultural or traditional practices during pregnancy that centre the well-being of the mother and child [ 10 , 36 , 38 , 40 , 45 , 48 ]. The examples presented below will demonstrate how the women reported various forms of such support, including advice on movement and exercise, traditional foods, and avoiding evil spirits [ 10 , 38 ]. These forms of support usually came from grandmothers, mothers, sisters-in-law, and aunts, as some participants mentioned in Edmonds’s et al. [ 10 ] study:

“You cannot go out at noon, evening, dawn, and night. Evil spirits will catch you.” “She (sister-in-law) forbade me to move in a clumsy way. She told me to be careful about movement and timing of movement.”

Spiritual support, in the context of this review, refers to relying on the ‘higher spiritual being’ (as some participants called it God and others called it Allah) to protect and reduce stress and pain during pregnancy via prayers from the pregnant women and their husbands, mothers, and grandmothers. The concept of spiritual support signifies the religious dimension of a relationship with a preferred power (e.g., God, Allah, or Brahman) [ 48 ]. All pregnant women in the selected studies highlighted God as a form of spiritual support, mentioning trusting God, praying to God to reduce stress, and faith in God’s protection [ 10 , 36 , 38 , 40 , 45 , 48 ].

“Prayer and supplication to God help me calm down and reduce my stress” [ 48 ] .

Spiritual support was not only experienced by the pregnant women but was a shared relational experience among them, their husbands, and other close family members. During the Covid-19 pandemic, faith in God was a type of support that one participant mentioned.

“When asked how she feels about the information she has received from her doctors, Becka said, ‘Confused. Nothing set in stone… Yeah, the information I get is all over the place. And so, I mean, the best I can do is keep myself protected and hope to God that it keeps me protected’” [ 36 ] .

Moreover, some participants reported religious group support during their pregnancy, mainly through counselling and financial support. The religious group support gave these women a sense of security and gave them the strength to persevere through this difficult time. It also gave them a sense of purpose, knowing that they had a support system, and that God was in control.

The all-encompassing parental home

The final main theme refers to how the participants expressed their experiences of social support within their family homes. For example, the parental home is the home of the pregnant woman’s parents, which usually, as the participants revealed, was the setting in which all their needs were met during pregnancy. This theme was developed from three studies assessing social support in Pakistan, India, and Bangladesh [ 10 , 44 , 46 ]. Most of the women from these countries mentioned their parental home as an integral part of their lives and described their parental home as a place where they feel happy and relaxed and receive more care.

“My parents thought if I will be there [in-laws’ house], I will have to work, so I won’t be able to take rest also, that is why they [my parents] brought me here” [ 46 ] .

The review affirmed that during pregnancy, women tend to spend more time in their parental homes, as their families often look after them in terms of chores, cooking, and cleaning [ 10 ].

This review sought to analyse and synthesise all available qualitative evidence about women’s experiences of social support during pregnancy. The participants in the included studies described a broad variety of social support experiences, including emotional, instrumental, and informational support. Four main themes were generated: “a variety of emotional support”, “tangible and intangible instrumental support”, “traditional rituals and spiritual support”, and “the all-encompassing parental home”.

This review found that pregnant people received emotional support from a diverse range of people within their social networks, gaining helpful support in terms of coping mechanisms and the regulation of stress during pregnancy and the COVID pandemic [ 10 , 36 , 42 , 43 , 45 , 46 ]. These findings align with Rini et al. [ 23 ], who found that emotional and intimate support from the marital relationship and the husband supports adjustment during pregnancy and increases well-being. Kolker et al. [ 68 ] also found that emotional support was particularly critical during the pandemic, as many women experienced isolation and loneliness. The lack of physical connection with family and friends due to the pandemic caused many women to experience higher levels of stress, anxiety, and feelings of loneliness. Women’s emotions are regulated through social support and their relationships, which, in turn, may reduce emotional exhaustion during pregnancy due to the fear of childbirth or fears of having a child born with illness [ 69 , 70 ]. The importance of emotional support (e.g., listening and affectionate interactions) is evident and consistent with the findings of this review [ 10 , 36 , 41 ].

Conversely, this review also highlighted a lack of or dissatisfaction with the emotional support that some of the participants experienced [ 38 , 39 , 40 , 44 , 47 , 48 ]. Insufficient family support harmed pregnant women’s maternal behaviour and health. For example, Fernandez and Newby [ 71 ] used interviews to explore the extent to which pregnant women of Mexican descent in the United States were supported by their families and partners. Their results indicated an association between family support and the circumstances of the pregnancy. Women without cohabiting relationships with the baby’s father before becoming pregnant received less emotional support from their families, particularly their mothers. These women were, therefore, less likely to look forward to prenatal care, adopt a healthy behaviour (e.g., smoking), or be excited about giving birth to their babies.

This finding also highlights the importance of instrumental support, such as financial, informational, and practical support during pregnancy. As it revealed that a lack of financial support increased stress and dissatisfaction, while the provision of this support increased feelings of safety, emotional support, and being cared for and not alone [ 10 , 40 , 42 , 44 , 48 ]. Therefore, although instrumental (e.g., financial, or informational) support may be seen as merely practical support, these types of behaviours may make the woman feel that she is loved, cared for, and supported: that she matters [ 37 ]. Thus, the practical aspects of social support may not be considered separate categories of support but occasionally interacting forms of social support.

Dissatisfaction with the husband’s or partner’s practical support also was found as part of the thematic synthesis [ 43 , 44 ]. However, when considering the role of practical support, a gap in the literature appears regarding many cultural factors. For instance, many studies argue that culture should be considered when trying to understand perceived satisfaction or dissatisfaction with the support given [ 72 , 73 , 74 ]. For example, in Western cultures, fathers’ roles have evolved from being only breadwinners to partners who play an active role in all aspects of their children’s lives [ 41 ]. However, women in Middle Eastern cultures (Saudi Arabia and Iran) are assumed to be primarily responsible for traditionally feminine tasks and homemaking, including attending to children’s needs, cleaning, and cooking, whereas men are the key breadwinners and are responsible for traditionally masculine tasks, such as making money, and home repairs [ 75 , 76 ]. This is an important argument as cross-cultural differences or the impact of culture on pregnant women’s perceptions were not considered in most of the studies included in this review, which might be one of its critical limitations.

The included studies highlighted how important informational support was for women to understand or make sense of their health-related experiences and gather information during pregnancy. This included positive feedback to normalise their experience, information about the foetus’s health condition and nutrition advice. Gist-Mackey et al. [ 77 ] suggested that informational support has previously been determined vital during times of uncertainty and stress (such as pregnancy and COVID-19 pandemic), supporting other literature affirming that informational support can decrease stress, anxiety, and ambiguity among pregnant women [ 78 , 79 ].

The theme of traditional rituals and spiritual support was also generated as part of the thematic synthesis. This was considered to take several different forms, such as prayers and advice on traditional food and avoiding evil spirits [ 10 , 36 , 38 , 40 , 45 , 48 ]. The role of traditional cultural customs, values, and beliefs has been explored in the existing literature. For instance, Ayaz and Efe [ 80 ] described how some people in Turkey believe that, if the pregnant woman eats quince during pregnancy, the baby will be born with dimples. However, the overall results of this review indicated that some pregnant women perceived traditional rituals as a way to show concern and care [ 10 , 36 , 38 ]. Prayer was a form of spiritual support that the participants in the included studies relied on during pregnancy to reduce stress and seek protection [ 10 , 36 , 38 , 45 ]. However, the role of spirituality and varying spiritual beliefs regarding the experience of stress may also be culturally influenced and shaped. In the current literature, the stress-buffering impact of spirituality may be higher among people from more conservative, religious cultures (e.g., Iranians), compared with those who are less religious, less conservative cultures. For example, a study conducted in Iran found that spirituality can reduce stress, particularly stress related to pregnancy [ 81 ]. It is also important to acknowledge that the role of spiritual support may have not only positive effects; as Mann et al. [ 82 ] emphasise, spirituality was associated with increased perceived stress among pregnant Hispanic people living in the US. The most likely explanation lies in the phenomenon of reverse causation (women with higher levels of stress seek comfort in religion). Therefore, the impact of spirituality on perceived stress may also be affected by the culture, among other broad factors (i.e., social, cognitive, personal, emotional, situational, or demographic factors).

During pregnancy, the parental home appeared important, with visits to this home described as motivated by the desire to reduce the pregnant person’s workload [ 10 , 44 , 46 ]. The benefits of visiting the parental home were often related to the women being surrounded by their families, who offered social and practical support. The finding that pregnant women experienced yearning for their parental homes can be explained by the theory of the collectivism/ individualism dichotomy as this theme arose from three studies performed in collectivist cultures (India, Bangladesh, and Pakistan). The theory of the collectivism/individualism dichotomy argues that individualistic cultures prioritise the needs of individuals over the needs of the group as a whole. Collectivist cultures are characterised by strong emotional bonds and social relationships between society members, especially mothers, whereas individualistic cultures have weaker emotional bonds [ 76 , 83 ]. Individuals from more collectivistic backgrounds reported feeling less alone and experiencing more social support from their families than those from individualistic backgrounds [ 84 , 85 ]. Therefore, further studies on individualistic cultures are needed to confirm these findings. However, they are consistent, from a broad psychological perspective, with the stress-buffering model, which emphasises that social support may buffer stress and contribute to a sense of belonging and stability, resulting in improved self-esteem and reduced stress [ 28 , 86 , 87 , 88 ].

Strengths and limitations

This review is the first one to consider qualitative research on women’s experiences of social support during pregnancy, which may inform future research designs. Additionally, it examines women's experiences of social support from all over the world and takes a rigorous and systematic approach. It reveals how social support and other factors impact women's well-being during pregnancy and what types of support they value. This review also provides insight into pregnant experiences during COVID-19 and provides some preliminary findings derived from recent research. However, the failure to conduct a sufficiently exhaustive search for studies is a potential limitation of any review, including this one [ 89 ]. Also, the small number of studies in this review curtail the richness and depth of the analysis of individual subjective meanings, making the findings difficult to generalise. Although the generalisation of qualitative findings is not typically the aim of qualitative research, generalisation does allow the analysis to be transferred to other contexts and settings [ 33 ]. Moreover, most of the included papers were from low-income countries; thus, future studies are needed to examine women’s experiences in wealthy countries.

Implications

Healthcare providers (e.g., nurses, psychologists, or social workers) should raise awareness about the importance of providing pregnant women with the required social support (e.g., emotional, instrumental, and informational) through their social circles, including the husband, mother, father, and female networks. Healthcare providers should tailor social support interventions to meet individualised needs as women’s needs may differ. For example, Dennis et al. [ 90 ] found that women who participated in breastfeeding peer support interventions valued emotional support most and were less focused on education and informational support, although many social support interventions focus on informational and educational aspects [ 91 ]. Interventions are most effective when they are developed based on the needs of the target population [ 92 ]. It is therefore important for healthcare providers to not adopt a one-size-fits-all approach, but rather tailor their services and interventions in order to meet the specific and diverse needs of women within their communities, based on research and data analysis results. Moreover, healthcare providers need to screen pregnant women to know what they value in receiving support and assess their level of emotional and practical support during pregnancy. This screening should be followed by encouraging the inclusion of the key support people (friends, family members, and partners) throughout pregnancy [ 43 , 47 ]. Yawn et al. [ 93 ] concluded that 654 of 1,897 women had elevated screening scores indicative of depression. This is significant as it shows that many women needed additional help and resources for mental health issues. Mental health screenings can provide valuable information to help identify those needing extra support. Thus, by integrating formal mental health screening into a wider assessment and taking into account the factors highlighted in this study, health professionals could achieve a more person-centred, holistic, and effective provision.

Additionally, policymakers and other relevant stakeholders should consider a community-based social support program for pregnant women as a means of helping them cope with the challenges of pregnancy. By providing such programs, we can facilitate a more comprehensive approach to maternal care, acknowledging that emotional and social support is an essential component of the well-being of a pregnant woman.

This systematic review provides insight into women’s experiences of social support during pregnancy. The results indicate that pregnant women experienced and valued a wide variety of emotional support from different sources, including their female networks, husbands, families, and parents. Furthermore, women experienced a mixture of tangible and intangible support and reported satisfaction and dissatisfaction with these kinds of support. In addition, the review highlighted the role of spirituality and how this was sometimes perceived as reducing stress and offering a coping mechanism, whilst for others, spirituality increased the stress experience. Overall, the results of this review provide insight into a range of experiences associated with social support in pregnancy.

Availability of data and materials

The datasets used and/or analysed during the current study are available.

from the corresponding author on reasonable request.

Abbreviations

Social support effectiveness

Coronavirus disease 2019

United Kingdom

United States of America

Enhancing the Transparency of the Reported Comprehensive Qualitative Research Statement

Medical Subject Headings

Preferred Reporting Items for Systematic Reviews and Meta-Analyses

Critical Analysis Skills Programme

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Acknowledgements

Thank you to Matthew for helping with quality appraisal of five studies.

This study was supported by PhD funding to the first author awarded by Kuwait University.

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Al-Mutawtah, M., Campbell, E., Kubis, HP. et al. Women’s experiences of social support during pregnancy: a qualitative systematic review. BMC Pregnancy Childbirth 23 , 782 (2023). https://doi.org/10.1186/s12884-023-06089-0

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Certain pregnancy complications linked to increased risks for premature death

Certain pregnancy complications, including gestational diabetes and preeclampsia, a dangerous rise in blood pressure after 20 weeks of pregnancy, have been linked to increased risks for cardiovascular disease years later. Now, a review of more than 2 million women who gave birth in Sweden found that 30% of participants had at least one of five adverse outcomes during pregnancy, which were linked to increased risks for overall premature death and measured for up to 46 years after delivery. 

Through this review, the researchers assessed data from women who had one of five types of adverse pregnancy outcomes: a preterm birth, a baby born with a small birthweight, gestational diabetes, preeclampsia, or other complications related to high blood pressure during pregnancy. These outcomes were compared to the incidence of overall death, which occurred among 4% of participants. The adverse outcomes were associated with a 1.1-1.5-times increased risk for premature death.  Causes of death varied and included dying from cardiovascular disease, respiratory conditions, diabetes, and cancer. Through additional analyses, the researchers found that all five adverse pregnancy outcomes were associated with a 1.5-2.5-times increased likelihood for premature death from cardiovascular disease compared to participants who did not have one of the adverse pregnancy outcomes. The authors note the research underscores the importance of early interventions to offset risks for pregnancy complications and supports long-term strategies for disease prevention. 

The study published in  JAMA Internal Medicine and was partially supported by NHLBI.

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• Pregnancy complications impart higher death risk for decades
• Major adverse pregnancy outcomes raise long-term mortality risks for mothers
• Pregnancy complications increase risk for early death
• Complications in pregnancy linked to long-term health risks for women
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• After adverse pregnancy outcomes, mortality risk lingers for decades

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Benefits of Counseling During Pregnancy

Pregnant women who have anxiety before childbirth are at increased risk for mental health concerns after the baby is born. Anxiety during pregnancy is more common in areas where mental health resources are scarce. A recent study showed that counseling given by non-specialists could help.

The study enrolled more than 750 pregnant women in Pakistan. All the women had symptoms of anxiety but not depression at the start. About half received routine medical care. The rest received at least six counseling sessions designed to treat anxiety. The counselors had college-level degrees in psychology but no clinical experience. The sessions taught women to replace anxious thoughts with helpful thoughts and behaviors.

By six weeks after childbirth, only 9% of the women who received counseling had moderate-to-severe anxiety. This compares to 27% in the routine care group. And only 12% of women who got counseling had an episode of major depression. In contrast, 41% in the other group had a depressive episode.

“In low-resource settings, it can be challenging for women to access mental health care due to a global shortage of trained mental health specialists,” says Dr. Joshua A. Gordon, director of NIH’s National Institute of Mental Health. “This study shows that non-specialists could help to fill this gap, providing care to more women during this critical period.”

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• Published: 25 January 2024

Bridging the gap between pregnancy loss research and policy and practice: insights from a qualitative survey with knowledge users

• Marita Hennessy   ORCID: orcid.org/0000-0001-7742-8118 1 , 2 &
• Keelin O’Donoghue 1 , 2  

Health Research Policy and Systems volume  22 , Article number:  15 ( 2024 ) Cite this article

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The loss of a pregnancy or the death of baby around the time of their birth can have profound impacts on parents, families and staff involved. There is much opportunity to enhance the systematic uptake of evidence-based interventions to enhance service provision, lived experiences and outcomes. Challenges exist to translating pregnancy loss research evidence into policy and practice, however. Pregnancy loss remains a neglected area of research and resourcing and is steeped in stigma. While barriers and facilitators to the use of research evidence by decision-makers in public health and health services are well documented, we aimed to better understand the factors that influence the translation of pregnancy loss research into practice and policy.

We conducted a qualitative online survey of pregnancy loss research knowledge users in Ireland, identified through our clinical and academic networks, between January and March 2022. The survey comprised ten questions, with three closed questions, informed by the Knowledge Translation Planning Template©. Questions included who could benefit from pregnancy loss research, perceived barriers and facilitators to the use of research evidence and preferred knowledge translation strategies. We analysed data using reflexive thematic analysis.

We included data from 46 participants in our analysis, from which we generated two central themes. The first—‘End the silence; stigma and inequality around pregnancy loss to enhance awareness and understanding, public health and services and supports’—addresses issues related to the stigma, sensitivities and silence, lack of awareness and understanding, and lack of relevance or priority afforded to pregnancy loss. The second theme—‘Use a range of tailored, accessible approaches to engage a large, diverse range of knowledge users’—highlights the need to use relevant, accessible, and engaging information, resources or materials in knowledge translation efforts, and a variety of tailored approaches to suit different audiences, including materials, workshops/webinars, media, knowledge brokers and champions or opinion leaders.

Conclusions

Our analysis provides rich insights into the barriers and facilitators to knowledge translation in the field of pregnancy loss research. We identified key strategies that can be used to inform knowledge translation planning in Ireland, and which have international applicability.

Peer Review reports

Pregnancy loss, in the form of miscarriage, stillbirth or neonatal death, occurs in 20–25% of all pregnancies. It is estimated that at least 15% of clinically recognized pregnancies miscarry [ 1 ], including up to 3% of all pregnancies which end in second trimester miscarriage [ 2 ], while the risk of stillbirth is 3.5 per 1000 total births [ 3 ]. Pregnancies can also end in termination or abortion; impacting approximately 39 per 1000 women aged 15–49 years [ 4 ]. The loss of a pregnancy, or death of a baby around the time of birth, can have profound physical, psychological and economic impacts on individuals and society [ 1 , 5 ]. Despite many improvements in medical care, progress has been slow in reducing stillbirth rates [ 3 , 6 , 7 ]. Indeed recent research shows that stillbirth rates are increasing in some high-income countries, including Ireland [ 8 ], England and Wales [ 9 ] and Germany [ 10 ], and rates of miscarriage are also increasing in some countries [ 1 ]. The need for action to address issues relating to miscarriage and stillbirth has been highlighted internationally [ 11 , 12 ].

There is much opportunity to enhance the systematic uptake of evidence-based interventions in the field of pregnancy loss, and within maternity care more broadly [ 13 ]. For example, clinical practice guidelines are often not implemented fully in practice [ 14 , 15 , 16 , 17 ], despite the potential to reduce stillbirths and perinatal mortality [ 18 , 19 ]. Internationally, care experience surveys demonstrate that there are aspects of care which are sub-optimal and not aligned with evidence-informed care [ 20 , 21 , 22 ]. Public knowledge concerning the incidence, risk factors and causes of various forms of pregnancy loss is limited [ 23 , 24 , 25 , 26 ], with calls for the implementation of evidence-based interventions to enhance public awareness and knowledge [ 8 , 27 , 28 ]. The UK Stillbirth and Miscarriage Priority Setting Partnerships have also identified issues surrounding communication and awareness as research priorities [ 29 , 30 ]. Progress in enacting legislation and implementing change concerning pregnancy loss has been slow, occurring against a backdrop of cultural and religious influences on reproductive rights [ 31 ]. Stigma around pregnancy loss—including stillbirth [ 32 , 33 , 34 ], miscarriage and abortion [ 35 , 36 ]—is one of the main barriers in improving outcomes and care experiences and has been the subject of many calls for action [ 37 ].

It is frequently cited that it can take 17 years for research evidence to reach practice [ 38 ], and although contested, this gap persists [ 39 ]. Knowledge translation is a ‘dynamic and iterative process that includes synthesis, dissemination, exchange and ethically sound application of knowledge to improve health’ [ 40 ]. Dissemination aims to increase awareness, knowledge, perceptions or motivation (antecedents of behaviour change) by strategically communicating information to target knowledge users—individuals who are likely to use and benefit from research results to inform their decision making around practices, programmes or policies [ 41 ]. Ideally, dissemination precedes implementation, which aims to promote the enactment of specific behaviours [ 42 ]. It is most effective when it starts early, stimulates support, uses champions and brokers, considers contextual factors, is timely, relevant and accessible, and knows the players and processes [ 43 ]. Knowledge translation strategies—encompassing dissemination and/or implementation—can facilitate the uptake of evidence into policy and practice, targeting change at individual, institutional or policy levels. There has been a growing number of knowledge translation interventions, as well as frameworks, theories and models to guide the selection of knowledge translation strategies in recent decades [ 44 , 45 , 46 , 47 ]. However, the range of knowledge translation strategies related to pregnancy loss practice and policy improvements remains unknown.

Research to understand influences on the use of pregnancy loss research in policy and practice is limited and is needed to inform knowledge translation strategies. Influences on the use of research evidence by decision makers in public health and health services are well documented. Barriers include the lack of relevant research, perceptions of evidence and skills and opportunity to use it, the culture and competing demands surrounding decision making, as well as practical constraints such as time and cost [ 48 , 49 ]. Enablers include access to and improved dissemination of relevant research, as well as promoting collaboration between policymakers and research staff [ 48 ]. Such influences have not been studied, specifically in relation to pregnancy loss, with decision makers or indeed other types of knowledge users. To increase knowledge translation efforts, we first need to understand the barriers and facilitators to uptake/adoption of pregnancy loss research in practice and policy.

Through an involvement activity with knowledge users, we aimed to better understand the factors that influence the translation of pregnancy loss research into practice and policy. Our objectives were to: (1) understand barriers and facilitators to research use and (2) identify preferred knowledge translation strategies. We focus on a broad range of knowledge users who can use pregnancy research loss to inform decision making at micro (individual or clinical), meso (organizational) and macro (regional or national) levels. In our analysis we seek to explore any variation in perceived influences on knowledge translation and preferred knowledge translation strategies.

Throughout this article, we use terms such as ‘pregnancy loss’, ‘miscarriage’ and ‘parents/parent advocates/bereaved parents’; however, we recognize that people have different views on the appropriateness of such terminology [ 50 , 51 , 52 ], particularly when applying it across different types of pregnancy loss experiences.

We utilized a qualitative online survey (available in Additional file 1 ) to better understand the factors that influence how pregnancy loss research can, or indeed should, influence policy and practice from the perspectives of a variety of pregnancy loss research knowledge users, including health professionals (hospital- and community-based), parent advocates/bereaved parents, support group representatives, journalists/media representatives, academics/researchers, medical students and decision makers. We draw on the Standards for Reporting Qualitative Research [ 53 ] in reporting our involvement activity (see Additional file 2 ).

Theoretical framing

Our work is concerned with eliciting knowledge users’ perceptions of what works, or not, and is informed by social constructionism and theories and frameworks in knowledge translation [ 44 , 45 , 46 ]. We approached this activity through the lens of social constructionism, acknowledging that there can be multiple perspectives on issues, events and activities—in our case, knowledge translation and pregnancy loss where such knowledge is socially constructed, culturally and historically situated, and dominant perspectives can arise from political and power relations [ 54 ]. Supported by the Knowledge to Action Framework, we interpreted knowledge translation from the creation of knowledge to its application [ 44 ]. We also attended to constructs from the Integrated-Promoting Action on Research Implementation in Health Services (i-PARIHS) framework which proposes that successful implementation of an innovation is the result of the facilitation of an innovation with recipients (individual and collective) in their context (inner and outer) [ 45 , 46 ].

• Qualitative survey

We developed a qualitative survey, drawing on elements of the Knowledge Translation Planning Template© [ 55 ], to achieve our aim. Qualitative surveys give participants control regarding their research participation and are generally less burdensome than in-person interviews as participants can complete them at a time, and in a location, that suits them; they also negate the need for transcription [ 56 ]. The Knowledge Translation Planning Template © enables the planning of a knowledge translation strategy [ 55 ]. It incorporates various steps including the identification of knowledge users, main messages and knowledge translation goals and strategies. The lead author was trained in the use of this framework as part of the SickKids Knowledge Translation Professional Certificate™.

The survey included questions relating to: who could benefit from pregnancy loss research and reasons for this, perceived barriers and facilitators to the use of research evidence, whether pregnancy loss research is any easier or harder to get into policy/practice than other health topics, or indeed within the field itself, and preferred knowledge translation strategies for pregnancy loss research (see survey questions in Additional file 1 ). We also asked participants what information they would like to see in a website that we were developing for our group (The Pregnancy Loss Research Group) [ 57 ]. We invited any additional comments at the end. We administered the survey via Qualtrics software [ 58 ].

We did not force responses to any of the questions so that participants could move freely through the survey and respond (or not) to any questions. We included two closed questions to prompt participants’ thinking around knowledge user and knowledge translation strategies based on the Knowledge Translation Planning Template© (a further closed question focused on participant characteristics), and we provided prompts for each question, including encouraging participants to tell us as much as they could in their responses; these were attempts to mitigate the aforementioned limitations of qualitative surveys. We encouraged participants to think about their own views or needs and to reflect on how their colleagues, peers or others might respond to the survey questions also, as they formulated their responses. We piloted the survey with members of the Pregnancy Loss Research Group prior to administration; no changes were made.

Participants and recruitment

We invited, by email, a pre-determined selection of knowledge users that we frequently engage with individually and/or through various fora ( n  = 87) and members of the Pregnancy Loss Research Group ( n  = 30) to participate in the survey between January and March 2022, with reminders. The former included members of the RE:CURRENT Research Advisory Group [ 59 ] and Oversight Group for the National Standards for Bereavement Care Following Pregnancy Loss and Perinatal Death [ 60 ], and other health professionals, media representatives, decision-/policy-makers and parent advocates. The Irish Hospice Foundation [ 61 ], our project partners, also shared details of the survey with its staff members ( n  = 40) and members of the Irish Childhood Bereavement Network [ 62 ] Steering Group ( n  = 12). All knowledge users were provided with the same, standardized information about the activity. We kept the survey open until a range of knowledge users had participated and we felt that we had dataset richness and sufficiency to address our aims [ 56 ].

Data analysis

Data were downloaded from Qualtrics into Microsoft Excel and imported into NVivo for data management and analysis. We analysed the quantitative data descriptively in Excel, reporting frequencies for responses to closed questions. We analysed responses to open-ended questions following the six phases of reflexive thematic analysis advocated by Braun and Clarke to identify patterns of meaning within the data; this analytical approach is theoretically flexible [ 63 ]. We familiarized ourselves with the survey responses by reading and re-reading them. We then coded responses to each individual question, developing initial themes, before generating overall themes across the dataset. We reviewed these themes in terms of their relationship to our aims, each other and to the dataset. We did not code according to a predefined framework, but rather engaged in primarily inductive coding at semantic (surface meaning) and latent (underlying meaning) levels. Because the analysis was underpinned by social constructionism, we did not take the participants’ accounts as face value, instead adopting a critical lens to look beyond the data surface to interrogate and interpret their accounts. M.H. led the analysis, with ongoing discussions of codes and themes with K.O.D.

Ethical considerations

This was an involvement activity—facilitated via a qualitative survey—with key knowledge users that we frequently engage with to inform knowledge translation activities/efforts rather than a research activity per se; therefore, ethical approval was not required [ 64 ]. We provided all participants with information about the activity and what it would involve before they agreed to participate (see survey information sheet; Additional file 1 ).

Reflexive statement

M.H. is postdoctoral researcher, with expertise in public health, health services research, dissemination and implementation science, and qualitative research. She has been researching in the field of pregnancy loss since 2020. K.O.D. is a consultant obstetrician and maternal fetal medicine sub-specialist. She founded the Pregnancy Loss Research Group in 2012 and has been active clinically and academically in the field of pregnancy loss for almost 20 years. Both are committed to and actively engaged in efforts to close the research to practice gap and engaging knowledge users—including people with lived experience—in such efforts. We work and/or collaborate with the knowledge users invited to participate in this involvement activity, or have in the past.

We received 57 responses between 24 January and 15 March 2022, of which 46 (81%) were deemed eligible for inclusion in our analysis based on participants providing a response to at least one question (‘Which of the following best describes you’ excluded).

Participant characteristics

The majority of participants identified as ‘Health professional—hospital-based’ ( n  = 11, 24%), ‘Academics—medical/nursing/midwifery’ ( n  = 5, 11%) and ‘Researchers (including PhD students)’ ( n  = 5, 11%) (Table  1 ).

As highlighted above, some participants had more than one role or identity. When individual roles were considered, the majority of participants identified as ‘Health professional—hospital-based’ ( n  = 16, 35%), ‘Researcher (including PhD students)’ ( n  = 9, 20%), ‘Parent advocate/bereaved parent ( n  = 8, 17%)’, Academic—medical/nursing/midwifery ( n  = 7, 15%) and Health professional—community/primary care ( n  = 6, 13%) (see Table S1, Additional file 3 ).

Quantitative analysis: priority knowledge users and preferred knowledge translation strategies

Two closed questions were asked to provide similar response options across the data set and prompt participants’ thinking. Four particular categories of knowledge user that could benefit from knowing about pregnancy loss research were prioritized by 80% or more of all participants ( N  = 46): women/men with lived/living experience of pregnancy loss ( n  = 41, 89%), policy makers/government ( n  = 40, 87%), decision makers ( n  = 39, 85%), media ( n  = 39, 85%), members of the public ( n  = 39, 85%) and practitioners/service providers ( n  = 37, 80%) (Table  2 ).

A total of 33 participants (72%) responded to the question regarding how they would like pregnancy loss research to be shared with them. A wide range of knowledge translation strategies (from the pre-defined list of strategies from the Knowledge Translation Planning Template©) was endorsed; the most popular being: materials ( n  = 24, 73%), workshops, including webinars ( n  = 24, 73%), media ( n  = 22, 67%), knowledge brokers ( n  = 21, 64%), peer-reviewed publications, i.e. journal articles ( n  = 21, 64%), champions/opinion leaders ( n  = 20, 61%) and conferences ( n  = 20, 61%) (Table  3 ).

Qualitative analysis

We actively generated two themes from participants’ responses across the entire dataset: (1) end the silence; stigma and inequality around pregnancy loss to enhance awareness and understanding, public health and services and supports and (2) use a range of tailored, accessible approaches to engage a large, diverse range of knowledge users. These themes, and sub-themes, are presented in Table  4 . Participant identities accompany the illustrative quotes; however, to preserve anonymity, we have not included participants’ roles.

Theme 1 | End the silence, stigma and inequality around pregnancy loss to enhance awareness and understanding, public health and services and supports

Within this theme, three interlinked sub-themes around pregnancy loss and inherent challenges to reducing the knowledge to policy and practice gap are illuminated: stigma, sensitivities and silence, lack of awareness and knowledge, and perceived lack of relevance or priority afforded to the area.

Steeped in stigma, sensitivities and silence

Many highlighted how stigma surrounding pregnancy loss impacted on knowledge translation efforts: it is a ‘sensitive/taboo topic that can be difficult to discuss/incorporate into policy’ [P5]. The sensitive nature of pregnancy loss and societal struggles around grief and bereavement result in a lack of public and private discourse around these issues, by people with and without lived or living experience.

‘The public are steeped in ‘its private/shameful/woman’s business/embarrassing’. People with experience are vulnerable and don’t feel they have acceptance or permission to talk about it (should keep it quite)…… For many they may be avoidant to avoid their own experience of loss’ [P15] ‘In the broader public and in education (school/university)—an historic and deep routed culture of stigma and tabus whereby issues around female health, pregnancy, fertility etc. are not discussed or when they are the impact of bias (related to religion, cultural views, gender etc.) is deep’. [P14]

Some also highlighted reluctance amongst researchers to ask people about loss, being ‘too afraid of upsetting people’ [P15], and the resulting ‘unintended consequence here of silencing the bereaved’ [P28]. Many stated that they felt that pregnancy loss research was more difficult to get into policy and practice than other topics:

‘It’s an emotive topic. It makes people uncomfortable. It’s still a hidden grief and quiet taboo. As such I think it is harder to put the research into practice. It’s not always seen as a priority... It’s not always recognized the huge impact pregnancy loss has. The research may not be seen as important and may be pushed to the back of the line’ [P19].

A few noted that certain types of pregnancy loss may be easier to get into policy/practice, including later losses (e.g. stillbirth) and/or fatal fetal anomalies which, although ‘less common’ than miscarriages, can be perceived as ‘real losses’ or involve tragic or shocking aspects which will ‘grab media headlines but usually after women/couples have been mistreated or let down by systems’ [P5]. Earlier losses, such as miscarriages and molar and ectopic pregnancies, might not be perceived as important or ‘valid’, although ‘common’ or ‘not common enough or as real baby losses’ [P15]. One participant also noted how this can impact what research is conducted and/or whose voices are heard, contending that there is ‘not enough research on lived experience of parents, especially where baby has a life-limiting condition’ [P33]. This ties in with the stigma surrounding, and indeed within, pregnancy loss.

Lack of awareness and understanding

Participants perceived that there was a general lack of awareness and understanding of pregnancy loss amongst many knowledge users, who are ‘removed from clinical care and lived experience’ [P8]. This extends to the various types of pregnancy loss, and the impact on women and men who experience the loss of a pregnancy, as well as society more broadly, including ‘the economic impact of loss of productivity to society associated with loss’ [P2]. As such, participants felt that a broad range of knowledge users needed to be targeted and would benefit from knowing more about pregnancy loss research. If more people knew about the nature of pregnancy loss and its impacts (and were interested/invested), they believed that it would be easier to affect change in this area (including policy, practice, public and private discourses) for a variety of reasons, including that it would be harder to ignore the evidence, impacts and need. Many felt that raising awareness would reduce stigma and isolation, enhance knowledge and preventive efforts, challenge misconceptions around pregnancy loss and improve the provision and quality of care and supports—within families, communities, society, healthcare, policy and beyond.

‘For decision/policy makers, if they were more aware of the personal impact of pregnancy loss, it might lead to the development of more empathetic policies e.g. around leave for miscarriage, opening up the stillbirth registry, funding for bereavement supports etc. For media, knowledge of the latest research/best practice recommendations can lead to news/features to raise awareness of issues experienced by those who suffer loss and fuel an ongoing conversation to make this topic less taboo so that people feel less alone, that they know there is support etc. For groups like Feileacain [the Stillbirth and Neonatal Death Association of Ireland] etc, it’s important to know the research around standards of care etc. and what good practice looks like in order to advocate for those they represent. For those with lived experience, I think it’s important to know research around the physical and psychological impact of pregnancy loss so they understand what they are going through, and also research around best practice so that they can advocate for themselves and their babies for the best care possible. For members of the public, unless personally impacted, they may be less interested in research, but a basic awareness of the main research, how common pregnancy loss is etc. can lead to better understanding and compassion in society at large. This could also apply to private industry for better HR policies and support strategies in the workplace’ [P34]. ‘Awareness around pregnancy loss is needed for the general public. The general public don’t see it as an issue until it affects them personally… More research funding should be provided to this area to improve services, information and awareness. Decision maker and policy makers ned to understand the impact that pregnancy loss can have on HCPs [healthcare professionals] and couples’ [P6].

Some also spoke about how women and men with lived experience need to know what research is being done, how they can get involved and its benefits (for themselves directly, and/or others in the future); it can also make them ‘feel heard’, ‘help them cope’ [P9] and ‘validate their loss’ [P19].

Not seen as relevant, or a priority

For many, pregnancy loss was ‘a neglected area for many years now’ [P8] in practice and policy, despite its prevalence and wide-ranging impacts. It was perceived as an area that was not seen as relevant or a priority by various knowledge users, including members of the public, women during pregnancy who may ‘consider it upsetting or not relevant to them’ [P11], bereaved parents who may be overcome with grief, or policy makers, health professionals and others who may have little awareness of, or interest in, the area. Participants noted how the public may not see the topic as relevant to them, unless they experienced pregnancy loss themselves, and therefore do not engage with it. Other knowledge users may also not recognize the relevance of the topic and/or not have a good level of awareness or knowledge around it.

‘Harder, in part because the financial impacts/losses are not ‘palpable’ (i.e. the economic/financial impact on the services) and in part because of the cultural issues (mentioned before) around this which lead to a mentality whereby pregnancy loss is not seen as a priority or an issue of as much relevance as others. It is also seen mostly as a female problem and this is closely related to cultural issues around how aspects of female health are addressed/seen and/or prioritized. An overall lack of awareness on the magnitude of the problem and its impact and knock-on effect is one of the main reasons why this a challenging topic to include into policy/practice discussions’ [P14].

Within funding and healthcare, ‘big topics like cancer and cardiovascular disease [were seen to] tend to dominate’ [P12] making it more difficult to get pregnancy loss on the agenda, with priorities shifting based on temporal political and social agendas.

‘Reproductive justice, women’s health is topical at present. Trauma and loss may well get more recognition in future. Health is often driven by short term targets of numbers—deliveries, waiting lists. Metrics that reflect compassionate or quality of care only lately being used. The long-term outcome both psychologically and financial (litigation) are less connected in the funding system’ [P26].

Participants highlighted that time and resources were needed to disseminate knowledge and implement appropriate evidence-based care (including care pathways) and supports within healthcare provision and workplaces, but were limited. Pregnancy loss had to compete against other areas and ‘so many vying for funds. Time, nothing happens quickly and things can frazzle out and lose traction’ [P19]. Without the necessary resources, knowledge translation would ‘increase the burden on the services already in place’, [P28] and this participant also noted ‘research burn-out’ amongst people who were ‘constantly taking part in research projects but witnessing change and improvements so slowly’.

Lack of visibility in research funding, and fatal determinism—not seeing or believing that there are solutions to prevent pregnancy loss resulting in inaction (especially amongst the general public, media and policy/decision makers)—were also cited as knowledge translation barriers.

‘Pregnancy loss is an emotive topic and I think that is one which is also accompanied by a sense of inevitability or nihilism. It is a contradictory area of research because although it is well known, often experienced (in private in many cases), it is not widely understood. Members of the public and key Government decision makers may feel there is not much that can be done as they do not understand how these can be prevented, that people need support while experiencing pregnancy loss and also the crucial (for Government) economic impact pregnancy loss may have’ [P18].

Some participants mentioned that sexism/inequality and ‘our paltry approach to women’s health and reproductive health in general’ [P2] have made it difficult to translate pregnancy loss research into policy and practice: ‘It is also seen mostly as a female problem and this is closely related to cultural issues around how aspects of female health are addressed/seen and/or prioritized’ [P14].

Theme 2 | Use a range of tailored, accessible approaches to engage a large, diverse range of knowledge users

This second theme turns attention to the ways in which pregnancy loss research can be communicated, and indeed conducted, to enhance its translation into policy and practice. Participants emphasized the importance of accessible, engaging and relevant information, as well as the use of a variety of tailored approaches to meet the needs of a broad range of knowledge users.

Accessible, engaging and relevant information

The need for relevant, accessible and engaging information, resources or materials featured across all participants’ accounts. This related to ensuring that information is: tailored to the particular knowledge user or audience being targeted, including language and format (sensitive and culturally and linguistically appropriate); relevant and presented clearly and concisely; accessible in terms of people being able to easily find or access it (e.g. shared through multiple channels and/or channels that they use, including standard protocols and guidelines, training, support groups and social media); made relevant or relatable through the sharing of lived experiences or personal stories, and by showcasing positive impacts or outcomes.

‘The key component I think in using research evidence is to be told about it. Most of us want to do the right thing by the people we serve, whether in the business world, professionally in the health services, as family members/friends of the affected, or policy makers. Well researched and clear evidence with clear outcomes informs us as a society—but getting it out there in competition with so much else going on is a challenge’ [P28]. ‘Facts and figures that are easy to understand and relate to social, economic and environmental factors (among others). Real life stories and experiences can illustrate impact of whatever is trying to be conveyed. Imagery and graphics that can help people to see and understand complex information or vast amounts of it’ [P18]. ‘Dissemination in an accessible manner with plain English summaries, trusted sources disseminating the clinical significance of the research to healthcare practitioners to save them time in assessing the quality of the research. Development of pathways and guidelines for healthcare professionals so a national standard of structured care can be developed to ensure all healthcare practitioners follow the best practice’ [P38].

Participants discussed how research can be inaccessible on several levels—including characteristics of individuals, the research itself and structures in which knowledge is produced and shared. Examples of issues surrounding accessibility included: not knowing where to source and/or how to interpret and apply research, journal articles being behind paywalls, research written in a way that is not easily understood (use of jargon) and/or without being explicit about its significance (on a personal level, or clinically), and the inability to access up-to-date research or research relevant to a person’s needs, to inform decision making. Participants suggested that ensuring that research has been rigorously conducted, so that people can have confidence and/or trust in the findings, is important. A few also mentioned that it is important that knowledge users, particularly those with lived experience, are involved or engaged in the research process.

Variety of tailored approaches needed (to suit particular audiences)

Participant accounts demonstrated that tailored knowledge translation strategies are needed to suit particular knowledge user groups, including both the communication channel and the message/information being shared; ‘for each stakeholder group there needs to be a segregated approach to delivering the messages (sometimes the messages are the same but just told differently)’ [P18]. In general, participants felt that certain strategies were suited to certain audiences. For example, the public may engage more with media, materials, workshops, social media and/or online information; researchers, health professionals and policy makers may engage more with policy briefs, opinion leaders, conferences and/or peer-reviewed journals; those in primary care and hospitals settings may prefer pamphlets/leaflets. Many felt that use of a wide variety of strategies was needed to broaden engagement, and increase awareness and knowledge, as one size did not fit all and people needed to be pro-actively engaged in a variety of ways.

‘One area for consideration is the harnessing of culturally appropriate approaches for those who do not engage with the usual health messaging fora’ [P2]. ‘Regardless of what your role is, you learn in a way that is unique to you, so I think we need a good mix of materials and ways of teaching in order to capture the interest in the issue of all those involved… once you know it, you can use it’ [P28] ‘I think that media/social media/art-based strategies (e.g. movies, creative writing etc.) have the potential to normalize the topic for the masses… Research is important to come from the medical community e.g. consultants, conferences, workshops etc. to provide continued education and to ensure our providers are informed on a sensitive [topic]’ [P9]. ‘I think the human interest/personal approach works best for those with lived experience and media. Media articles, using social platforms like Instagram, collaborations with charities like [Charity Name] who are already engaged with patients/families, I think these are all good ways to reach people who would not be in the academic sphere, reading medical journals etc. You can see in the UK… how they [campaigns] use social media to get their message out. It’s user friendly, accessible, personal, but also sensitively done’ [P34].

A few also noted that it should be easier to get pregnancy loss research into policy/practice through champions—people with an interest and commitment within healthcare, advocacy organizations (including individuals with lived experience not necessarily affiliated to any organization) and policy/decision making—advocating for change. ‘Healthcare practitioners recognize its importance and are often compelled by the stories of their patients to aim to provide the best treatment’ [P38] and ‘parent advocates and support organisation have become more vocal to ensure that politicians are informed of the concern and asks of bereaved parents and published research evidence on pregnancy has been used to back up these asks and concerns’ [P41]. The benefits of ‘trusted sources disseminating the clinical significance of the research to healthcare practitioners to save them time in assessing the quality of the research’ [P38] was also highlighted.

We aimed to better understand the factors that influence how pregnancy loss research can, or indeed should, influence policy and clinical practice by seeking the views of knowledge users via a qualitative online survey. Participants highlighted specific challenges to translating knowledge regarding pregnancy loss into policy and practice, including stigma, sensitivities and silence, lack of awareness and knowledge, and perceived lack of relevance or priority. These are key issues to attend to and address as part of pregnancy loss knowledge translation activities, in particular knowledge translation for policy change. Lack of knowledge and awareness have been highlighted in previous research [ 23 , 24 , 25 , 26 ], as has stigma around various forms of pregnancy loss [ 32 , 33 , 34 , 35 , 36 , 37 ]. Of interest in our analysis was the perceived stigma within the field itself, with some forms of pregnancy loss being more ‘appropriate’ or easier to communicate around. This finding is also important due to ongoing differences and shifts within definitions of fetal viability which blur the lines between certain types of losses, e.g. second trimester miscarriage and stillbirth [ 65 ], and abortion, pregnancy loss, subjective fetal personhood [ 66 ] and curtailments to abortion care which also impact on miscarriage care, as well as stigma associated with terminology around ‘miscarriage’ and ‘abortion’ [ 51 , 67 ]. Appreciating how connected pregnancy loss experiences are will help to normalize and de-stigmatize all pregnancy endings that do not result in a live birth [ 51 , 67 ]. Furthermore, effective communication is an important part of shaping people’s experiences and views of pregnancy loss, and thus establishing the most appropriate language and framing to use in knowledge translation activities is vital [ 68 , 69 , 70 ]. As highlighted elsewhere, cultural, societal and religious barriers to knowledge translation prevail in the field [ 31 ].

In the second theme, strategies to enhance the translation of research evidence into policy and practice were highlighted, including making information accessible, engaging and relevant, as well as using a variety of tailored approaches to meet the needs of a broad range of knowledge users. These included materials, workshops/webinars, media, knowledge brokers and champions or opinion leaders. Tailoring interventions to identified barriers may enhance knowledge translation efforts. For example, a Cochrane review found that tailored interventions may improve professional practice compared with no intervention or guideline dissemination alone [ 71 ]. Specifically tailoring to knowledge users and the contexts within which they operate is important to enhance effectiveness [ 72 ]. Evidence is building around the potential impact of knowledge brokers [ 73 , 74 , 75 , 76 ] and champions [ 77 , 78 ] in knowledge translation efforts. Participants highlighted the potential of narratives and the sharing of lived experiences of pregnancy loss to enhance awareness and affect change in policy and practice. This is a potentially powerful knowledge translation strategy [ 79 , 80 ], with opportunities to develop our understanding of the effectiveness and mechanisms of action of this approach [ 81 ]; similar applies to arts-based strategies [ 82 , 83 ]. The knowledge translation strategies prioritized by knowledge users should be utilized, and evaluated, given that initiatives to improve research-policy engagement in general, while numerous, are poorly evidence informed [ 84 ], described and evaluated [ 85 ]. The latter can contribute to waste and harms—such as misused time and resources, reduced goodwill towards researchers and increased competition between initiatives [ 85 ]. Contextually sensitive strategies are needed, with guidance available on the selection and tailoring of strategies [ 86 , 87 ]. Particular attention should also be paid to strategies to support the use of evidence in policymaking and the implementation of evidence-based policies, drawing on models such as the Exploration, Preparation, Implementation and Sustainment (EPIS) framework [ 88 ] to enhance health policy’s role in dissemination and implementation. The selection of knowledge translation strategies should consider both implementation and sustainability of evidence-based interventions to ensure use and benefit from these, and continue to do so [ 89 ].

Allied to international, and indeed national, calls to address issues relating to miscarriage and stillbirth [ 11 , 12 ], there is also an opportunity to harness the political attention that pregnancy loss is slowly garnering. For example, many countries, including Ireland, are examining supports (including statutory leave) for people who experience pregnancy loss in the workplace particularly following the introduction of paid bereavement leave for couples who experience miscarriage in New Zealand [ 90 ], and the United States is grappling with the fall out from the overturning of the constitutional right to abortion care [ 91 ], amongst other issues. These are ‘windows of opportunity’ which we can capitalize on in our knowledge translation efforts. Our analysis provides insights to maximize these opportunities, which requires an understanding of the context within which activities or decision making takes place, including societal structures and policy-/decision-making environment [ 92 ]. This is an important component of knowledge translation models and frameworks [ 44 , 45 , 46 , 47 ], which should be used to inform the conduct and evaluation of activities. Knowledge translation is a highly relational process [ 93 ]. While published evidence to support best practices is limited [ 94 , 95 ], meaningfully involving knowledge users, particularly people with lived experience, in both the production and translation of knowledge—through integrated knowledge translation and related approaches (e.g. co-production)—is essential [ 94 , 96 , 97 ].

Strengths and limitations

Strengths of our work include the inclusion of a diverse range of knowledge users; often research tends to focus on policy/decision makers. This current work involved knowledge users that we engage with in our work at the Pregnancy Loss Research Group, across all types of pregnancy loss; future endeavours could include a broader range of knowledge users, including those internationally. Within the survey we asked knowledge users about barriers and facilitators to the use of research evidence and preferred knowledge translation strategies for pregnancy loss research in general, investigating differences by knowledge user type and intention (practice or policy levels) in our analysis. Further work may be needed to develop knowledge translation plans, with refined knowledge translation strategies, for specific interventions.

While qualitative surveys can be limited by ‘thin responses’, we developed our survey following guidance to mitigate this [ 98 , 99 ] and had sufficient richness to address our aims. Furthermore, we included data from 46 participants which is a good sample size for a qualitative survey [ 56 ]. We provide detailed description of our methodology and illustrative quotes throughout this article to support rigour and to aid reader interpretation of our analysis and its transferability [ 100 ].

Our analysis provides rich insights into the influences on knowledge translation in the field of pregnancy loss. The stigma, sensitivities and silence, lack of awareness and understanding, and lack of relevance or priority afforded to pregnancy loss must be addressed as part of efforts to affect change in practice and policy. Relevant, accessible and engaging information, resources or materials, and tailored approaches that meet the needs of different types of knowledge users are needed, and must be co-created with them. We identified strategies that can be used to inform knowledge translation planning for pregnancy loss research in Ireland, and which have international applicability.

Availability of data and materials

Knowledge users who participated in this involvement activity did not give written consent for their data (beyond anonymized quotes) to be shared publicly. Supporting data is not therefore available, due to the sensitive nature of the activity; however, we provide illustrative quotes throughout this article to support rigour.

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Acknowledgements

We wish to thank all of the knowledge users who shared their views with us; and the Irish Hospice Foundation who is our civic society partner on the PLATFORM project, in particular Dr Amanda Roberts, Bereavement Development Officer.

This work was funded by the Irish Research Council through its New Foundations Awards and in partnership with the Irish Hospice Foundation as civil society partner [NF/2021/27123063]. The funders had no role in the design of the involvement activity and collection, analysis and interpretation of data and in writing the manuscript.

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Conceptualisation was performed by M.H. and K.O.D. Data curation was performed by M.H. Formal analysis was performed by M.H. and K.O.D. Funding acquisition was carried out by K.O.D. and M.H. Investigation was performed by M.H. Methodology was created by M.H. and K.O.D. Project administration was carried out by M.H. Writing—original draft was performed by M.H. Writing—review and editing was performed by M.H. and K.O.D. All authors read and approved the final manuscript.

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Supplementary Information

Additional file 1..

Survey tool

Additional file 2.

Standards for reporting qualitative research checklist

Additional file 3: Table S1.

Participant roles: individual roles

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Hennessy, M., O’Donoghue, K. Bridging the gap between pregnancy loss research and policy and practice: insights from a qualitative survey with knowledge users. Health Res Policy Sys 22 , 15 (2024). https://doi.org/10.1186/s12961-024-01103-z

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DOI : https://doi.org/10.1186/s12961-024-01103-z

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A new look at cancer treatments during pregnancy

by University of Washington School of Medicine

For an OB-GYN, one of the worst-case scenarios runs like this: A woman comes in, overjoyed that she is finally pregnant after years of fertility treatments. Then a month later, she finds out she has cancer—news that is devastating for the patient and difficult for the doctor because options, both practically and politically, can be limited.

It's this scenario that starts the commentary penned by UW Medicine OB-GYNs Drs. Alisa Kachikis and Linda Eckert in support of research published April 17 in JAMA Network Open .

Researchers from the University of Paris and Sorbonne University analyzed pregnancy and neonatal outcomes of 3,558 patients who received chemotherapy during pregnancy, including 91 who were treated with drugs called immune checkpoint inhibitors .

Immune checkpoint inhibitors block proteins from binding with their partner proteins in the body. In the treatment of cancer, the inhibitors allow T cells from the immune system to find and destroy cancer cells , according to the National Cancer Institute.

In the 91 cases that received immune checkpoint inhibitors, almost 60% did not report an adverse outcome for the mother or the fetus.

The data analysis study was not an endorsement for using cancer therapeutics on pregnant patients, authors of the commentary said. In fact, the authors warn against using the drugs, if possible, during pregnancy, while acknowledging that immune checkpoint inhibitors were better tolerated than first thought.

"I think this study isn't designed to give a simple answer," said Eckert. "It's designed to say that, if the use of immune checkpoint inhibitors for cancer treatment is one of the options, at least there is a little bit of data now available."

The researchers were particularly interested in the safety of immune checkpoint inhibitors because they have been shown to be effective against a number of cancers, and their use in treating pregnant patients is expected to rise.

In their accompanying commentary, the authors noted that the fact that the study was conducted and published is a step in the right direction.

The lack of "data on the use of critically important therapeutic agents in pregnant individuals is not new," they wrote. "Partially a result of the devastating legacy of thalidomide use in pregnancy, decisions to limit medication exposures of pregnant individuals and to exclude them from clinical trials as vulnerable population has contributed to the dearth of data on use of many medications in pregnancy."

Kachikis and Eckert stressed that more research and funding are needed, specifically in treatments that might help women remain pregnant while fighting cancers and other diseases.

This policy came to the forefront when the COVID-19 pandemic hit in 2020. When the vaccine arrived for the general population in 2021, pregnant individuals had not yet been included in clinical trials to establish the vaccines' safety. Many pregnant individuals received the COVID-19 vaccines with almost no information about their safety. Many pregnant women refused the shots. Later, research determined the vaccines were safe.

The French researchers gleaned the information in their report by reviewing 3,500 patient cases for 45 distinct adverse pregnancy, fetal and neonatal outcomes. They scrutinized the outcomes after immune checkpoint inhibitors and other cancer-fighting drugs were taken. The data came from the World Health Organization's international database.

"Reproductive health research has historically been underfunded," Kachikis said. "And yet we still have to discuss treatment options with our patients, with or without this data."

For clinicians in states that ban abortions, even discussion of the impact of cancer treatment on the fetus may be illegal.

"What is a pregnant person with cancer to do if she needs information and her obstetrician cannot have a discussion about the impact of the cancer treatment on the pregnancy, because it might suggest the need to terminate a pregnancy?" Eckert asked.

"In some states, we can't even discuss these options," Kachikis added.

The study's limitations include not also investigating long-term outcomes after birth. However, Eckert said, "the data, though limited, is reassuring. And information does offer a little bit of hope."

Paul Gougis et al, Immune Checkpoint Inhibitor Use During Pregnancy and Outcomes in Pregnant Individuals and Newborns, JAMA Network Open (2024). DOI: 10.1001/jamanetworkopen.2024.5625

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About Teen Pregnancy

The US teen birth rate (births per 1,000 females aged 15 to 19 years) has been declining since 1991.  Teen birth rates continued to decline from 17.4 per 1,000 females in 2018 to 16.7 per 1,000 females in 2019.  This is another record low for US teens and a decrease of 4% from 2018. 1,2  Birth rates fell 7% for females aged 15 to 17 years and 4% for females aged 18 to 19 years. 2

Although reasons for the declines are not totally clear, evidence suggests these declines are due to more teens abstaining from sexual activity, and more teens who are sexually active using birth control than in previous years. 3, 4

Still, the US teen birth rate is substantially higher than in other western industrialized nations, 5 and racial/ethnic and geographic disparities in teen birth rates persist. 1,2

Disparities in Teen Birth Rates

Teen birth rates declined from 2018 to 2019 for several racial groups and for Hispanics. 1,2  Among 15- to 19-year-olds, teen birth rates decreased:

• 5.2% for Hispanic females.
• 5.8% for non-Hispanic White females.
• 1.9% for non-Hispanic Black females.

Rates for non-Hispanic American Indian/Alaska Natives (AI/AN), non-Hispanic Asians, and non-Hispanic Native Hawaiian, and other Pacific Islander teenagers were unchanged.

In 2019, the birth rates for Hispanic teens (25.3) and non-Hispanic Black teens (25.8) were more than two times higher than the rate for non-Hispanic White teens (11.4). The birth rate of American Indian/Alaska Native teens (29.2) was highest among all race/ethnicities. 1  

Birth Rates for Females Aged 15 to 19 Years, by Race and Hispanic Origin of Mother: United States, 2018 and 2019

Geographic differences in teen birth rates persist, both within and across states. Although among states with low overall teen birth rates, some counties have high teen birth rates. 6

Social determinants of health, such as low education and low income levels of a teen’s family, may contribute to high teen birth rates. 7 Teens in certain settings are at higher risk of teen pregnancy and birth than other groups. For example, young women living in foster care are more than twice as likely to become pregnant than young women not in foster care. 8

To improve the life opportunities of adolescents facing significant health disparities and to have the greatest effect on overall US teen birth rates, CDC uses data to inform and direct interventions and resources to areas with the greatest need.

The Importance of Prevention

Teen pregnancy and childbearing are associated with increased social and economic costs through immediate and long-term effects on teen parents and their children.

• Pregnancy and birth are significant contributors to high school dropout rates among girls. Only about 50% of teen mothers receive a high school diploma by 22 years of age, whereas approximately 90% of women who do not give birth during adolescence graduate from high school. 10
• The children of teenage mothers are more likely to have lower school achievement and to drop out of high school, have more health problems, be incarcerated at some time during adolescence, give birth as a teenager, and face unemployment as a young adult. 11
• On a positive note, between 1991 and 2015, the teen birth rate dropped 64%, which resulted in $4.4 billion in public savings in 2015 alone. 12

Evidence-based teen pregnancy prevention programs have been identified by the US Department of Health and Human Services (HHS) Teen Pregnancy Prevention Evidence Review , which used a systematic process for reviewing evaluation studies against a rigorous standard. The Evidence Review covers a variety of diverse programs, including sexuality education programs, youth development programs, abstinence education programs, clinic-based programs, and programs specifically designed for diverse populations and settings.  In addition to evidence-based prevention programs, teens need access to youth-friendly reproductive health services and support from parents and other trusted adults, who can play an important role in helping teens make healthy choices about relationships, sex, and birth control.  Efforts at the community level that address social and economic factors associated with teen pregnancy also play a critical role in addressing racial/ethnic and geographical disparities observed in teen births in the United States.

• Martin JA, Hamilton BE, Osterman MJK, Driscoll AK. Births: final data for 2019. Natl Vital Stat Rep . 2021;70(2):1–50.
• Martin JA, Hamilton BE, Osterman MJK, Driscoll AK. Births: final data for 2018. Natl Vital Stat Rep . 2019;68(13):1–47.
• Santelli J, Lindberg L, Finer L, Singh S. Explaining recent declines in adolescent pregnancy in the United States: the contribution of abstinence and improved contraceptive use. Am J Public Health . 2007;97(1):150–6.
• Lindberg LD, Santelli JS, Desai S. Understanding the decline in adolescent fertility in the United States, 2007–2012. J Adolesc Health . 2016:1–7.
• Sedgh G, Finer LB, Bankole A, Eilers MA, Singh S. Adolescent pregnancy, birth, and abortion rates across countries: levels and recent trends. J Adolesc Health . 2015;56(2):223–30.
• Romero L, Pazol K, Warner L, et al. Reduced disparities in birth rates among teens aged 15 to 19 Years—United States, 2006–2007 and 2013–2014. MMWR Morbid and Mortal Wkly Rep . 2016;65(16):409–414.
• Penman-Aguilar A, Carter M, Snead M, Kourtis A. Socioeconomic disadvantage as a social determinant of teen childbearing in the US Public Health Rep . 2013;128(suppl 1):5–22.
• Boonstra HD. Teen pregnancy among women in foster care: a primer. Guttmacher Policy Review . 2011; 14(2).
• National Campaign to Prevent Teen and Unplanned Pregnancy,  Counting It Up: The Public Costs of Teen Childbearing 2013 . Accessed March 31, 2016.
• Perper K, Peterson K, Manlove J. Diploma Attainment Among Teen Mothers. Child Trends, Fact Sheet Publication #2010-01: Washington, DC: Child Trends; 2010.
• Hoffman SD. Kids Having Kids : Economic Costs and Social Consequences of Teen Pregnancy . Washington, DC: The Urban Institute Press; 2008.
• Power to Decide.  Progress Pays Off . Accessed January 10, 2019.
• STDs and Adolescents and Young Adults
• CDC Contraceptive Guidance for Health Care Providers
• Adolescent and School Health

Exit Notification / Disclaimer Policy

• The Centers for Disease Control and Prevention (CDC) cannot attest to the accuracy of a non-federal website.
• Linking to a non-federal website does not constitute an endorsement by CDC or any of its employees of the sponsors or the information and products presented on the website.
• You will be subject to the destination website's privacy policy when you follow the link.
• CDC is not responsible for Section 508 compliance (accessibility) on other federal or private website.

• Introduction
• Conclusions
• Article Information

SMARTT indicates Surveillance Monitoring for ART Toxicities.

a Only pregnancies and mothers who were still in the study on December 1, 2017 (when the Women’s Health Study [WHS] opened), were included in the count.

b Data on hypertension (a clinical covariate of interest) were collected starting in 2015.

c Vaccination data were collected beginning November 14, 2018. Mothers enrolled before November 14, 2018, could still have vaccination data if there was delay between the enrollment visit and when the study staff actually abstracted the information or if the mother was co-enrolled in AMP Up and had medical record abstracted data available.

eFigure. Prevalence of Vaccine Uptake in Pregnancy Among Persons Living With HIV in SMARTT, by Selected Maternal Characteristics (2015-2019)

eTable 1. Distribution of Characteristics by Inclusion in Study Population

eTable 2. Characteristics of Eligible Pregnancies by Type of Vaccination

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Berhie S , Kacanek D , Lee J, et al. Routine Vaccination During Pregnancy Among People Living With HIV in the United States. JAMA Netw Open. 2024;7(5):e249531. doi:10.1001/jamanetworkopen.2024.9531

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Routine Vaccination During Pregnancy Among People Living With HIV in the United States

• 1 Division of Maternal-Fetal Medicine, Department of Obstetrics and Gynecology, Northwestern University Feinberg School of Medicine, Chicago, Illinois
• 2 Division of Maternal-Fetal Medicine, Department of Obstetrics and Gynecology, Brigham and Women’s Hospital, Boston, Massachusetts
• 3 Center for Biostatistics in AIDS Research, Department of Biostatistics, Harvard T.H. Chan School of Public Health, Boston, Massachusetts
• 4 Division of Infectious Diseases, Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, Illinois
• 5 Departments of Internal Medicine and Pediatrics, Massachusetts General Hospital, Boston, Massachusetts
• 6 Department of Immunology and Infectious Diseases, Harvard T.H. Chan School of Public Health, Boston, Massachusetts
• 7 Department of Epidemiology, Harvard T.H. Chan School of Public Health, Boston, Massachusetts
• 8 American University of Integrative Sciences, St Michael, Barbados

Question   What is the prevalence of routine vaccination among pregnant people living with HIV?

Findings   In this cohort study of 310 pregnancies among 278 people living with HIV, less than one-third of participants received recommended vaccines in pregnancy: influenza and tetanus, diphtheria, and pertussis. Lower numerical rates of vaccination were observed among multiparous participants and those with perinatally acquired HIV, but the differences did not reach statistical significance.

Meaning   Given the importance of antenatal vaccination for maternal-child health, the data in this study suggest that pregnant people living with HIV have urgent need for clinical and public health interventions to improve vaccine receipt.

Importance   Pregnancy represents a window of opportunity for vaccination due to established maternal and fetal benefits of vaccination. Little is known about receipt of routinely recommended vaccines in pregnancy, specifically tetanus, diphtheria, plus acellular pertussis (Tdap) and influenza, among pregnant people living with HIV (PLHIV).

Objective   To estimate prevalence of vaccination receipt among pregnant people with HIV (PLHIV) and identify demographic and clinical characteristics associated with vaccination.

Design, Setting, and Participants   This multicenter cohort study included women participating in Women’s Health Study (WHS) of the Surveillance Monitoring for ART Toxicities (SMARTT) Study of the Pediatric HIV/AIDS Cohort Study. The network has been enrolling pregnant PLHIV at 22 US sites since 2007. Participants for this study enrolled between December 2017 and July 2019. Data analysis was conducted from October 2021 to March 2022.

Exposure   Data on vaccination in pregnancy were collected through medical record abstraction.

Main Outcomes and Measures   Vaccination receipt was defined as Tdap vaccination received at less than 36 weeks’ gestation and influenza vaccination at any gestational age, based on current guidelines. Log-binomial and modified Poisson regression models with generalized estimating equations were fit to identify factors associated with successful receipt of (1) Tdap, (2) influenza, and (3) both vaccinations.

Results   A total of 310 pregnancies among 278 people participating in the WHS were included (mean [SD] age, 29.5 [6.1] years; 220 [71%] Black, 77 [25%] Hispanic, and 77 [25%] race and ethnicity other than Black; 64 [21%] with perinatally acquired HIV). Less than one-third of pregnancies were vaccinated as recommended (Tdap, 32.6% [95% CI, 27.4%-38.1%]; influenza, 31.6% [95% CI, 26.5%-37.1%]; both, 22.6% [95% CI, 18.0%-27.6%]). People living with perinatally acquired HIV, those who did not identify as Black, or those who were multiparous had adjusted risk ratios (aRRs) less than 1, while older PLHIV had aRRs greater than 1, but these differences did not reach statistical significance (perinatally acquired HIV: adjusted risk ratio [aRR], 0.46; 95% CI, 0.21-1.02; race other than Black: aRR, 0.53; 95% CI, 0.26-1.08; multiparous: aRR, 0.59; 95% CI, 0.35-1.00; age 24-29 years: aRR, 2.03; 95% CI, 0.92-4.48).

Conclusions and Relevance   In this diverse, multicenter cohort of pregnant PLHIV, receipt of recommended vaccinations was low. Identifying and addressing barriers to vaccination receipt is urgently needed for pregnant people with HIV.

Vaccinations are a critical component of routine prenatal care. Three vaccines are currently recommended in pregnancy by the American College of Obstetricians and Gynecologists (ACOG) and the US Centers for Disease Control and Prevention (CDC): the combined tetanus, diphtheria, and acellular pertussis (Tdap); influenza; and COVID-19 vaccines. 1 - 3 Pregnant people are at increased risk of influenza-related morbidity and mortality, which has motivated the recommendation for antenatal influenza vaccination with the secondary benefit of neonatal protection. 1 , 4 - 6 Additionally, after 27 weeks’ gestation there is fetal benefit with maternal Tdap vaccination, regardless of the recency of prior maternal Tdap vaccination. 2 The antenatal Tdap vaccine acts as a protective bridge to the neonate’s first dose of the pertussis vaccine at 2 months of life. 6 Lastly, severe outcomes have been observed among pregnant people who acquire SARS-CoV-2 infection, 7 - 10 and with demonstrated safety and efficacy of COVID-19 vaccinations, vaccination during pregnancy is recommended for all individuals. 11 - 17

Despite extensive and conclusive data on the safety and efficacy of influenza and Tdap vaccines during pregnancy, vaccination in the United States is not universal. 18 A nationwide survey of pregnant people conducted between 2019 and 2020 found only 69.2% of pregnant persons reported receiving an influenza vaccination and 56.6% received Tdap. Of this cohort, only 40.3% received both recommended vaccines during pregnancy. 19 Retrospective data from an academic medical center in Chicago found higher, but still suboptimal, rates of vaccine uptake in pregnancy, at 70% for influenza and 87% for Tdap. 20 Data on COVID-19 vaccination also suggest low receipt in pregnancy; as of July 2021, only 21.8% of pregnant people identified in the CDC vaccine safety database received 1 or more doses of a COVID-19 vaccine during pregnancy. 21 , 22

Vaccination recommendations for pregnant people living with HIV (PLHIV) mirror those for pregnant people without HIV, with some augmentation (ie, consideration of hepatitis A, hepatitis B, pneumococcal, and meningococcal vaccination, if indicated) due to their immunocompromised status. However, there are few studies on antenatal vaccination for PLHIV. One study from Atlanta assessed vaccination in pregnancy and found that PLHIV were less likely to be vaccinated against either influenza (4.8% vs 10.3%) or the influenza/Tdap combination (39.7% vs 43.3%) compared with peers without HIV. 23 Data on other vaccinations among PLHIV are limited but suggest receipt of other vaccines, such as the human papillomavirus (HPV) vaccine, which is recommended to be administered post partum, is similarly low. 24 Influenza vaccination rates for the general population of people living with HIV is also suboptimal, with data from a large health system in California from 2013 to 2018 revealing influenza vaccination uptake at 65% to 69% for PLHIV. 25 Given the paucity of data on the topic of routine vaccination in PLHIV, our objective was to estimate the prevalence of and identify factors associated with receiving influenza and/or Tdap vaccinations among pregnant PLHIV participating in a large multisite prospective cohort in the United States.

The Surveillance Monitoring for ART Toxicities (SMARTT) study, conducted by the Pediatric HIV/AIDS Cohort Study (PHACS) network, has been enrolling pregnant PLHIV at 22 US sites since 2007. The SMARTT study is designed to evaluate the safety of antiretroviral medications taken during pregnancy by PLHIV by evaluating pregnancy outcomes and the health of their children, who are living with perinatal HIV exposure but uninfected. Between December 1, 2017, and July 31, 2019, SMARTT PLHIV who were either pregnant or had an enrolled child younger than 5 years of age were invited to participate in the Women’s Health Study (WHS), a nested substudy within SMARTT that examined the health of pregnant and nonpregnant PLHIV. The WHS consisted of expanded data collection on pregnancies and maternal health. While new data collection in the WHS took place between 2017 and 2019, the design of the study allowed for earlier medical record abstraction on all pregnancies of PLHIV enrolled in SMARTT. The institutional review board at each site reviewed and approved the study. Participants provided written informed consent prior to their participation in SMARTT. This report follows the STROBE reporting guidelines for observational studies.

The study population for this analysis was derived from participants in the WHS ( Figure ). The analysis for this study began in October 2021 and was completed in March 2022. Eligibility was restricted to people with available vaccination data in pregnancy and who delivered on or after March 15, 2015, through February 28, 2020. The primary outcome was vaccination receipt during pregnancy, which was assessed through medical record data abstraction; vaccination case report forms that were retuned without indication of vaccination were considered nonvaccination. The following vaccination outcomes were considered: Tdap at 27 weeks of gestation or greater, influenza vaccine received at any time during pregnancy, and both Tdap and influenza vaccines with appropriate timing. ACOG recommends receiving Tdap prior to 36 weeks’ gestation, but as this may not always be clinically feasible and there may still be fetal benefit with later administration, for this analysis, any individual with Tdap receipt between 27 weeks’ gestation and delivery was considered to have received Tdap. 2 Due to the long influenza season and accordingly wide availability of influenza vaccination at most clinical sites (typically from September to May), we considered all individuals to be eligible for influenza vaccination during pregnancy, as pregnancy periods of all individuals who experienced a live birth would have overlapped with this time. Receipt of the COVID-19 vaccine was not analyzed as vaccine data for this analysis were collected through February 2020.

Variables of interest included demographic characteristics, including age at conception, year of conception, self-identified race (American Indian, Asian, Black, Native Hawaiian or Other Pacific Islander, White, and and unknown), ethnicity (Hispanic or Latinx, non-Hispanic or -Latinx), highest education level, annual household income, and clinical characteristics, including mode of HIV acquisition (perinatally acquired HIV vs non–perinatally acquired HIV), timing of prenatal care initiation (first trimester vs second or third trimester), parity, comorbidities (presence of asthma, diabetes, or chronic hypertension), and any substance use during pregnancy. Race was categorized as Black, race other than Black, or unknown given that 71% of the study population was Black. Substance use was defined as use of tobacco, alcohol, cannabis, sedatives, methamphetamine, cocaine, heroin, MDMA, ketamine, opium, methadone, inhalants, or hallucinogens.

For each vaccine outcome, the proportions of pregnancies with vaccination receipt and exact 95% CIs under a binomial distribution were estimated. Distributions of the demographic and clinical characteristics were summarized with proportions for categorical variables and means for continuous variables. Characteristics of eligible pregnancies are reported overall and for each of the 3 vaccination outcomes.

Univariable and multivariable log-binomial regression models were fit for each of the vaccine outcomes with generalized estimating equations (GEEs) to account for correlation between multiple pregnancies per participant. An exchangeable correlation structure was assumed for univariable models. For multivariable models, modified Poisson regression was used with an independent correlation structure, a simpler structure, to assure model convergence. Three types of multivariable models were fit: model 1 included only demographic characteristics, model 2 included only clinical characteristics, and model 3 included all demographic and clinical characteristics. The quasi-likelihood under the independence model criterion (QIC) statistics were compared across the 3 models to assess model fit. 26 Model 3’s QIC demonstrated best fit and is presented in the results as the adjusted estimates. All statistical tests were 2-sided and conducted with an α of less than .05. All analyses were performed using SAS software, version 9.4 (SAS Institute).

Of 3718 pregnancies from 2609 PLHIV enrolled in SMARTT, 673 PLHIV participated in the WHS substudy, contributing 814 pregnancies. Within this group, 310 pregnancies (among 278 PLHIV) met eligibility criteria for this analysis ( Figure ). eTable 1 in Supplement 1 describes the study population in contrast to those who did not meet eligibility criteria. Participants with unknown characteristics have been excluded from the percentage calculation for the respective characteristic. Pregnancies included were more frequently of people who were high school graduates (238 of 310 [79%] vs 346 of 504 [70%]), nulliparous (86 [28%] vs 68 [17%]), were living with perinatally acquired HIV (64 [21%] vs 62 [12%]), and had lower frequency of comorbidities (79 [27%] vs 114 [33%]) in contrast to those excluded.

Characteristics of the 310 pregnancies of 278 individuals are summarized in Table 1 . Among all pregnancies, the mean (SD) age at conception was 29.5 (6.1) years. Overall, 220 patients (71%) were Black; 77 (25%) were Hispanic, and 77 (25%) identified as a race other than Black; 238 (77%) were experienced by those with at least a high school education. A total of 64 pregnancies (21%) were experienced by participants with perinatally-acquired HIV, 217 (70%) were experienced by individuals who were multiparous, and 215 (69%) were experienced by individuals who had initiated prenatal care by the end of the first trimester of pregnancy. eTable 2 in Supplement 1 describes characteristics of the sample by the type of vaccine received.

Tdap vaccine was administered in 32.6% (95% CI, 27.4%-38.1%) of the pregnancies, influenza in 31.6% (95% CI, 26.5%-37.1%), and both vaccines in 22.6% (95% CI, 18.0%-27.6%). Vaccination was less frequent in pregnancies of individuals who were younger, multiparous, had low income, or had perinatally acquired HIV (eFigure in Supplement 1 ).

In univariable regression analyses, the proportion of pregnancies of multiparous PLHIV with influenza vaccine receipt was lower than that among nulliparous PLHIV ( Table 2 ), and this difference persisted in the multivariable model (adjusted risk ratio [aRR], 0.57; 95% CI, 0.39-0.83). Other clinical or demographic factors were not significantly associated with receipt of the influenza vaccine.

After adjusting for maternal and clinical characteristics, pregnancy calendar year was associated with Tdap vaccination; the aRR of Tdap vaccination was 1.88 (95% CI, 1.14-3.13) in 2016 to 2017 compared with pregnancies in 2014 to 2015. Our data also suggested pregnancies of PLHIV with perinatally acquired HIV had lower Tdap vaccination compared with those with non–perinatally acquired HIV, but the difference was not statistically significant (aRR, 0.57; 95% CI, 0.31-1.03). Furthermore, pregnancies of multiparous PLHIV had an aRR of less than 1 for Tdap vaccination, but the results were not statistically significant (aRR, 0.71; 95% CI, 0.47-1.07) ( Table 3 ).

Finally, in evaluating receipt of both influenza and Tdap vaccines, pregnancies of multiparous PLHIV had an aRR less than 1 relative to pregnancies of nulliparous PLHIV for both vaccines, but the results were not statistically significant (aRR, 0.59; 95% CI, 0.35-1.00) ( Table 4 ). Pregnancies of PLHIV with perinatally acquired HIV had aRRs less than 1 for receiving both vaccines (aRR, 0.46; 95% CI, 0.21-1.02), as did pregnancies of individuals who did not identify as Black (aRR, 0.53; 95% CI, 0.26-1.08). In contrast, pregnancies of individuals with older age had aRRs greater than 1 for receiving both vaccines; however, confidence intervals were wide (eg, age 24-29 years: aRR, 2.03; 95% CI, 0.92-4.48) ( Table 4 ).

This study is among few of which we are aware to describe the prevalence and correlates of Tdap and influenza vaccination in pregnancy for PLHIV. In this cohort, receipt of Tdap and influenza vaccines in pregnancy was low, with fewer than one-third receiving either vaccination and fewer than one-quarter receiving both vaccines, based on medical records. The relative risk of receiving Tdap or both vaccines was also lower in pregnancies of PLHIV who acquired HIV perinatally than among those acquiring HIV later in life. Additionally, pregnancies of multiparous PLHIV had lower relative risk of receiving the influenza vaccine in pregnancy compared with nulliparous PLHIV, whereas pregnancies of older PLHIV had a greater relative risk of receiving both vaccinations. There were also temporal changes in vaccine receipt seen with higher rates in the latter part of the cohort timeline.

Our results demonstrate low receipt of routine vaccinations in a cohort of pregnant PLHIV. Vaccine uptake in the general population of pregnant people is below public health goals, with reports of vaccination from the CDC’s nationwide survey from 2019 to 2020 showing that 61.2% of pregnant people reported receiving influenza vaccination, 56.6% received Tdap, and 40.3% received both. 27 The Tdap vaccination has been recommended as standard of care for every pregnant individual by the CDC’s Advisory Committee on Immunization Practices expanded since 2013. 28 Data from a single institution demonstrated a temporal finding in Tdap vaccination rates: vaccination uptake increased over time, with an increase from 47.4% to 86.1% between 2011 and 2015. 20 However, our findings suggest an increase between 2014 and 2015 (15.8%) to 2016 and 2017 (40.6%) but then suggests a potential plateau from 2017 onward, as the 2018 and 2019 uptake was stable at 43.9%. Additionally, in this same study by DiTosto et al, 20 it was hypothesized that the 2013 recommendation for Tdap vaccination in pregnancy may have increased influenza vaccine uptake, as receipt of the influenza vaccine went from 61.2% to 72.0% between 2011 and 2015 in the general pregnant population. A trend toward similar findings was seen in our data, although further work is required.

Like previous studies, we found nulliparity to be associated with higher probability of influenza vaccine receipt, whereas the association of parity with vaccination was less pronounced for Tdap. 20 , 29 This difference may be explained by the perceived difference between the Tdap and influenza vaccines. Tdap is counseled as a vaccine for fetal and neonatal benefit while influenza is counseled as a vaccine to prevent maternal as well as neonatal morbidity and mortality. Individuals who are pregnant for the first time may be more hesitant to take on the personal risk of influenza illness than those who have been through a pregnancy. It is important to note that vaccination in pregnancy is not only important for the maternal-fetal dyad, but a person’s decision to decline recommended vaccinations in pregnancy is a predictor for poor childhood vaccine uptake. 30

In this diverse cohort, the aRRs for receipt of both vaccines were less than 1 among individuals who did not identify as Black (compared with those who were Black), although findings did not achieve statistical significance. This finding contrasts with other studies that observed lower receipt of vaccination during and outside of pregnancy among people identifying as Black. 31 Additionally, lower vaccination receipt has been documented among people who are Black and/or low-income, who may be less likely to be offered, trust, or accept vaccines such as HPV, influenza, pneumococcal, and COVID-19 compared with individuals who are White or have higher income. 32 - 36 A rigorous, multipronged approach to understand the role of social determinants of health with regard to vaccination and address them through policy change and programmatic intervention is urgently needed. 37

We found that people with perinatally acquired HIV had lower rates of vaccination in pregnancy compared with those who acquired HIV later in life. This finding fits with other data comparing clinical outcomes between these 2 groups. People with perinatally acquired HIV have distinct challenges in the setting of pregnancy and have complex psychosocial, socioeconomic, and medical concerns. 38 - 42

Pregnancy is a period of enhanced health care access and engagement, serving as a critical window of opportunity for preventive health interventions such as vaccination. Additionally, pregnant people are at increased risk of morbidity and mortality from infections such as influenza. 18 Thus, counseling about and receiving antenatal vaccinations are of utmost importance for all pregnant people, especially those with immunocompromising comorbidities like HIV. While some data suggest lower vaccination immunogenicity in PLHIV without optimal control and more advanced disease, no risks have been revealed and vaccination continues to be the standard of care in this population. 43 - 45 Evidence-based interventions to improve vaccine receipt exist in pediatric and adolescent care, where vaccinations are an integral part of routine care. Successful interventions incorporate a multipronged approach in efforts to improve vaccine uptake. Novel interventions, such as reminder text messages to parents, web-based informational sites, and placing prepopulated orders in clinic records to limit health care professional error, have demonstrated improved outcomes. 46 , 47 In the adult population, a randomized clinical trial demonstrated that in a group of predominantly racial and ethnic minority participants, a pneumococcal vaccination video and brochure was associated with increased vaccination rates compared with being shown an informational video alone. This dual information approach was also associated with more documented physician-patient discussion about the vaccine. 48 However, little such work has extended to pregnant PLHIV.

Our findings build upon prior published literature that demonstrate that people have suboptimal receipt of recommended vaccines in pregnancy and show that pregnant PLHIV are even less likely to receive these recommended vaccinations relative to historical general population estimates. Individuals in this population may also have not been offered a vaccine. Future studies utilizing self-reporting methods and comparing survey research methods with chart abstractions would be beneficial for better comparing our results with those of other studies. Alternatively, it could be that the lower prevalence of vaccination receipt we observed was due to lack of trust in the health care system, which can influence health care utilization for PLHIV. PLHIV are often from communities that have been systematically disenfranchised, exploited, and marginalized and as a result may face barriers to accessing high-quality health care, or have experienced discrimination or been mistreated in other ways during medical encounters, which could increase skepticism of health care systems. 49 , 50 Future research on interventions and innovation in counseling and information dissemination is needed among pregnant PLHIV to better understand the reasons for and circumstances surrounding suboptimal receipt of vaccines during pregnancy. Understanding the perspectives of pregnant people with and without HIV regarding vaccination during pregnancy is crucial and can inform successful clinical and social interventions to improve vaccination during pregnancy. Our team is conducting ongoing qualitative work on this issue, aiming to identify targeted programming and interventions capable of improving routine vaccination in pregnancy. Such work also needs to address how strategies that are developed for well-established vaccinations can be rapidly adapted to novel vaccinations, particularly for vulnerable populations. Future work should also consider clinician- and health system–based barriers to receiving recommended vaccinations during pregnancy.

One strength of our study is that this is the largest assessment of routine vaccination for pregnant PLHIV to date and includes data from a well-characterized, nationally representative cohort. Our diverse population is also a strength, as pregnant people from underrepresented communities are often not included in research.

However, there are limitations to note. Although participants were enrolled prospectively, the data on vaccination receipt do not offer additional insight beyond whether and when the vaccine was administered; data obtained via medical record abstraction do not detail the reasons for lack of vaccination. Such reasons may include inadequate clinician recommendation for vaccination, participant refusal of vaccination, or barriers to health care access that preclude vaccination. Retrospective data review of medical records may also underestimate vaccination, such as when patients received vaccination in an outside medical system. Despite SMARTT being one of the largest studies of its kind in the United States, our sample size is limited due to the subset of pregnancies with data collection on vaccination, thus restricting power to detect difference by covariates of interest. Additionally, the confidence intervals estimated for the outcomes may be affected by correlation between repeat pregnancies. 51 Furthermore, the participants who enrolled in the SMARTT cohort may not represent the HIV community with respect to vaccination, as they may feel more comfort and integration with the health care system and potentially have higher vaccination rates compared with those who chose not to participate in SMARTT. Future work should corroborate these results in larger and ongoing cohorts.

Understanding barriers to and perspectives on routine vaccination for pregnant PLHIV is of vital importance to improve the health outcomes of pregnant people and their infants. Our data demonstrate suboptimal receipt of antenatal vaccines with evidence-based benefit in a cohort of pregnant PLHIV. Clinicians, researchers, and public health systems must identify and evaluate the impact of innovative and impactful strategies, including improved patient-facing messaging, as the current approach is unsuccessful at achieving the clinical and public health goals of widespread antenatal vaccination.

Accepted for Publication: February 28, 2024.

Published: May 2, 2024. doi:10.1001/jamanetworkopen.2024.9531

Open Access: This is an open access article distributed under the terms of the CC-BY License . © 2024 Berhie S et al. JAMA Network Open .

Corresponding Author: Saba Berhie, MD, Division of Maternal-Fetal Medicine, Department of Obstetrics and Gynecology, Brigham and Women’s Hospital, 75 Francis St, Boston, MA 02115 ( [email protected] ).

Author Contributions: Dr Kacanek and Ms Lee had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: Berhie, Kacanek, Lee, Powis, Salomon, Yee.

Acquisition, analysis, or interpretation of data: Berhie, Kacanek, Lee, Jao, Salomon, Siddiqui, Yee.

Drafting of the manuscript: Berhie, Yee.

Critical review of the manuscript for important intellectual content: Kacanek, Lee, Jao, Powis, Salomon, Siddiqui, Yee.

Statistical analysis: Kacanek, Lee.

Obtained funding: Berhie, Kacanek, Yee.

Administrative, technical, or material support: Berhie, Salomon, Siddiqui, Yee.

Supervision: Powis, Yee.

Conflict of Interest Disclosures: Dr Kacanek reported receiving grants from the National Institutes of Health (NIH) during the conduct of the study and outside the submitted work. Dr Powis reported receiving grants from National Institute of Child Health and Human Development during the conduct of the study as well as receiving grants from the National Institute of Child Health and Human Development and National Institute of Allergy and Infectious Diseases outside the submitted work. Dr Yee reported grants from NIH during the conduct of the study and outside the submitted work. No other disclosures were reported.

Funding/Support: The study was supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development; Office of the Director, National Institutes of Health; National Institute of Dental and Craniofacial Research; National Institute of Allergy and Infectious Diseases; National Institute of Neurological Disorders and Stroke; National Institute on Deafness and Other Communication Disorders; National Institute of Mental Health; National Institute on Drug Abuse; National Cancer Institute; National Institute on Alcohol Abuse and Alcoholism; and National Heart, Lung, and Blood Institute through cooperative agreements with the Harvard T.H. Chan School of Public Health (grant No. HD052102; principal investigator: George R Seage III; program director: Liz Salomon) and the Tulane University School of Medicine (grant No. HD052104; principal investigator: Russell Van Dyke; co–principal investigator: Ellen Chadwick; project director: Patrick Davis), and through Harvard T.H. Chan School of Public Health for the Pediatric HIV/AIDS Cohort Study 2020 (grant No. P01HD103133; multiple principal investigators: Ellen Chadwick, Sonia Hernandez-Diaz, Jennifer Jao, and Paige Williams; program director: Liz Salomon). Data management services were provided by Frontier Science (data management center director: Suzanne Siminski), and regulatory services and logistical support were provided by Westat, Inc (Project Directors: Julie Davidson, Tracy Wolbach).

Role of the Funder/Sponsor: The funders had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Group Information: Nonauthor members of the Pediatric HIV/AIDS Cohort Study (PHACS) appear in Supplement 2 .

Disclaimer: The conclusions and opinions expressed in this article are those of the authors and do not necessarily reflect those of the National Institutes of Health or US Department of Health and Human Services.

Data Sharing Statement: See Supplement 3 .

Additional Contributions: We thank the women for their participation in PHACS, and the individuals and institutions involved in the conduct of PHACS.

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