Patient-provider communication about pregnancy and HIV among female sex workers living with HIV in Santo Domingo, Dominican Republic

Pregnancy rates among women living with HIV have significantly increased over the last 10 years across geographic settings, giving increased salience to preconception conversations surrounding pregnancy [1, 2]. Conversations surrounding pregnancy care and counseling by a health provider can address the increased risks that women living with HIV and their infants face, therefore leading to improved health outcomes [3, 4, 5]. For women living with HIV who desire more children, preconception care and counseling provides an opportunity to promote planned pregnancies, dispel fears about pregnancy and HIV, educate women on prevention of mother to child transmission of HIV (MTCT) through ART adherence and retention in care, and help ensure safe outcomes for both mother and child [5, 6, 7, 8]. Further, for women who do not want to get pregnant, discussing pregnancy and family planning can prevent unwanted pregnancies and potential negative mental and physical health outcomes.

When conversations surrounding pregnancy do occur between women living with HIV and their health providers, they are frequently patient-initiated and occur after pregnancy [6, 8, 9]. Health care workers’ methods of communication and their attitudes have been seen to influence proactive communication and personal decisions surrounding pregnancy and fertility among women living with HIV [10, 11, 12]. If women living with HIV perceive negative attitudes, stigma or discrimination about childbearing from their health provider, they are more likely to have negative attitudes themselves and may avoid discussing fertility [12, 13]. In many settings, however, a majority of HIV-infected women of reproductive age have never discussed pregnancy and childbearing with their health providers, highlighting a clear gap in service provision [6, 7, 8].

Reasons for this gap and for the lack of pregnancy communication between health providers and women living with HIV can be seen from both the provider and patient perspective. From a patient perspective, women may be more concerned with competing priorities and more immediate concerns when seeing a health provider. Women may also feel stigmatized or judged due to their HIV infection or lack a sense of empowerment to discuss sexual health [13]. Even if women living with HIV feel that they can conceive with appropriate care, they may still feel societal stigma at having children, adding to difficulty in initiating the conversation [8]. Providers may be reluctant to discuss reproduction and fertility or may assume that women living with HIV do not want to become pregnant [13]. From a dual perspective, there may be lack of knowledge about pregnancy in HIV by either patient or provider, or a lack of defined provider roles if the patient is seeing multiple providers for care [13].

In addition to preconception communication surrounding pregnancy, challenges in communication have been seen to continue through care and treatment after pregnancy [14]. For example, patient-provider interactions during pregnancy related to ART initiation and adherence [12] have been found to include negative factors such as stigma and discrimination, a biomedically-focused conversation without addressing social factors [15] and power dynamics between patient-provider that affect a woman’s ability to ask questions [16].

Within the body of research focused on patient-provider communication for women living with HIV, there has been limited attention to marginalized populations, such as female sex workers (FSWs). Globally, many FSWs have children and have been pregnant [17, 18]. Similar to women living with HIV, FSWs face severe discrimination from health care workers and other barriers to care in different geographic settings [19, 20, 21, 22]. At the same time, FSWs are at greater risk for a number of health concerns including HIV, other STIs, gender-based violence [18, 23, 24] and complications associated with reproductive health, pregnancy and childbearing [25, 26].

The global burden HIV for FSWs is significant, with FSWs having approximately 13.5 greater odds of being HIV-infected than women in the general population in lower and middle-income countries [27]. Additionally, FSWs living with HIV are faced with multiple stigmatized identities. They are more likely to experience discrimination in health care settings, report feelings of social isolation once they learned their HIV sero-status, face refusal of medical care or fear of seeking services compared to FSWs not living with HIV [21]. Prior research has found that FSWs who desire children are more likely to have higher levels of HIV-related internalized stigma, a history of pregnancy loss and perceive that their partner has negative feeling about a pregnancy [28]. FSWs who become pregnant after HIV diagnosis are more likely to have ART interruption and have a more negative perception of their health provider [29]. Acknowledgement of the need for comprehensive and tailored prevention, care and treatment for this population is understood by the global community [22]. This paper aims to understand factors related to patient-provider communication about pregnancy among FSWs living with HIV in Santo Domingo, Dominican Republic (DR).

This study aimed to understand factors related to communication with health providers among female sex workers living with HIV in the DR. Results highlight that while pregnancy and childbearing are prevalent in these women’s lives, there are clear barriers to provider communication about pregnancy, as has been documented previously in other studies of women living with HIV [6, 8]. Many FSWs living with HIV who have been pregnant since diagnosis and who want more children have never spoken to a provider about pregnancy. Pregnancy, pregnancy desire, and having children are prevalent among these women. However, this population is at high risk for pregnancy and postpartum related health issues and therefore is most in need for constructive, non-judgmental conversations with their health provider.

Substance use (both current alcohol use and history of drug use) was a significant deterrent to provider communication about pregnancy. Substance use has also been associated with ART interruption, STI diagnosis and having detectable viral load for women living with HIV [30, 38]. Since substance use is also a stigmatized behavior, a population that is dealing with multiple stigmatized identities may avoid discussing pregnancy for fear of judgment. It is important to consider how substance use may further inhibit self-initiated or provider-initiated communication about pregnancy based on explicit and implicit biases among female sex workers living with HIV who are also substance users.

We also found that female sex workers living with HIV who had a more positive perception of their providers were significantly more likely to have spoken to a health provider about pregnancy, possibly because they felt that they will not be judged by their provider about their reproductive health decisions. Provider verbal and non-verbal attitudes have been seen to be influential on the desire to discuss pregnancy and personal decision-making surrounding pregnancy among women living with HIV [10, 11, 12, 39]. For these women who have multiple reproductive health concerns and who face multiple barriers to care, the need for non-discriminatory care and counseling from healthcare and HIV clinical providers is critical for both maternal and child health.

Lack of patient-provider communication about pregnancy has been seen among women living with HIV in other settings [6, 7, 8, 40], however FSWs may be at greater risk pregnancy related complications [25, 26]. The lack of patient-provider communication surrounding pregnancy in this study is concerning due to the high reported number of lifetime pregnancies, number of children and pregnancies that did not result in live births. These women were all of reproductive age when diagnosed with HIV and had seen a health provider at least once, highlighting missed opportunities for education and tailored care. Many FSWs living with HIV reported not using any contraceptive methods to prevent pregnancy in the last 6 months and reported not wanting more children, highlighting an unmet need for conversations surrounding family planning. Additionally, studies have found that female sex workers living with HIV who want children are more likely to have HIV-related internalized stigma and a history of pregnancy loss, [28] while those who have been pregnant after HIV diagnosis are more likely to have a negative perception of their health provider and have ART interruption [29].

We did not find a significant association between HIV or sex work internalized stigma and speaking to a provider about pregnancy in this study. Many female sex workers may not disclose their sex work to providers for fear of stigma or judgment, [19, 20, 21, 22] which may explain the lack of association with the sex work related internalized stigma scale. Other studies have also found influences between HIV related stigma and patient-provider communication [8, 13] and the desire for more children [29].

Patient-provider communication regarding reproductive health and pregnancy is essential on multiple levels- to reduce stigma, to tailor care, and to provide appropriate support for women living with HIV. While the majority of female sex workers living with HIV had spoken to a health care provider about pregnancy and HIV, it is of concern that numbers were lower among HIV-positive women who had been pregnant since HIV diagnosis, who wanted more children and who had negative perceptions of pregnancy and HIV. Further, the fact that most women felt that lack of access to treatment and care was a problem for sex workers and many have been afraid to seek services due to HIV or sex work- further research is needed to explore dynamics between female sex workers living with HIV and health providers.

Proper preconception conversations with providers can dispel anxiety, encourage adherence and ultimately improve maternal and child health as well as help avoid unwanted pregnancies and prevent unsafe abortion [5]. In a country that where there are strict legal barriers to safe abortion, [41] a history of high maternal and infant mortality rates [42] and a history of questionable maternity wards practices, [43] understanding barriers to patient-provider communication is even more salient for these women, who face multiple stigmatized identities.

There are several limitations that should be discussed with regard to this study. First this study is cross-sectional in nature and therefore only captures participant information at one point in time. There may be issues with self-report or recall bias for many questions and a level of social desirability bias for issues surrounding health care or behavior. Future studies should focus on nuances of patient-provider communications surrounding pregnancy among these women including whether conversations are patient or provider initiated or if these conversations occur pre or post conception. Qualitative studies would also be helpful to further understand the context and details of these conversations. With these limitations and gaps in mind, this study did highlight important factors related to patient-provider communication about pregnancy for a key population that is at high risk for unintended pregnancy, MTCT and health complications during pregnancy. Interventions with health providers are needed to ensure safe and respectful conversations surrounding family planning for a population that is in significant need of comprehensive reproductive health services.

Female sex workers living with HIV face a number of challenges and barriers to care for reproductive health. FSWs with a history or current substance use may be less likely to have conversations about HIV and pregnancy with their provider, but they are at greater risk for pregnancy complications. Non-judgmental provider-initiated conversations surrounding pregnancy and family planning are essential for a safe pregnancy outcomes. Health providers sensitized to these concerns can play a critical role in promoting the health and well-being of FSWs living with HIV and their families. Tailored services and interventions that address multiple levels of risk for FSWs living with HIV are crucial, as this population faces unique health concerns and barriers to care.