Gaps in the congenital syphilis prevention cascade: qualitative findings from Kern County, California | BMC Infectious Diseases

Five focus group discussions were conducted with 42 pregnant/postpartum women. Fifty percent of pregnant/postpartum women were aged between 20 and 29 years, and 43% were between 30 and 39 years, with 40% identifying as Hispanic or Latina. More than 90% of pregnant/postpartum women had an annual income less than $15,000 (Table 1).

Ten interviews were conducted with 4 male and 6 female providers, including obstetrician/gynecologists (Ob/Gyn), nurse practitioners, and maternal–fetal medicine specialists. All providers had been in their current (at the time of interview) position for at least 1 year. Four were deeply rooted in Kern county, reporting they had been in their current place of employment for more than a decade. Six providers were in a community or public clinic, 2 were in a single-specialty group practice and 2 were in a multi-specialty group practice (Table 2).

Pregnant/postpartum women’s perspectives on initiating and staying in prenatal care and getting tested and treated for syphilis

The pregnant/postpartum study participants shared a broad range of perspectives surrounding their experiences with accessing and using prenatal care services throughout Kern County. All were aware of the importance of starting and staying in prenatal care throughout pregnancy. At the same time, however, they all talked about the numerous barriers they experienced in their lives, all of which were perceived to increase likelihood of falling into gaps along the cascade of CS prevention. We organize the findings in this section according to barriers reported, as they pertained to: (1) Prenatal care access, (2) Social, economic and cultural factors, and (3) Substance use and co-occurring intimate partner violence and domestic violence (IPV/DV).

Prenatal care access

Focus group participants consistently shared narratives about how pregnant women in Kern County struggle with getting timely and appropriate access to prenatal care services. Key barriers mentioned included long waiting times to schedule appointments and/or see a provider, health insurance limitations, and geographic and transportation-related obstacles.

Long waiting times Many women said gaps in their timely entry to and retention in prenatal care were caused by difficulty with scheduling appointments. Specifically, women were frequently told they would have to wait weeks or months to get in to see a provider and those who did finally go to a clinic usually faced long-wait times between their arrival and the start of their appointment.

“I would say time frames. They wouldn’t be flexible with the scheduling, so it would be, like, what they offered and they wouldn’t really work with you on when you could go in.” – Participant from Focus Group #4

Health insurance limitation Participants attributed long wait times and related retention gaps to not having health insurance or having health insurance with restrictions, including not being accepted by a particular provider who is located close to their home. Others felt there was a limited number of prenatal care providers available or willing to see them.

“I didn’t get to actually see a doctor until two and a half months later [after I made an appointment call]. There were so many people [waiting to see the doctor] already. They are just backed up. Unless you have a private insurance, you’re not getting in any time soon.” – Participant from Focus Group #2

Geographic and transportation-related obstacles Kern County is geographically spread out and many women felt healthcare facilities were too far from their houses and/or workplaces to travel back and forth for frequent visits. Long-distance travel was not possible given the many other responsibilities (e.g., work, taking care of children and family members) participants were balancing. Several additional transportation-related obstacles were narrated, including lack of a personal vehicle, what was perceived to be an inefficient public transportation system in Kern County, and costs of transportation. Although some health centers offered services like ridesharing and bus access, these options were not always possible or available to those in more rural areas of the region. All of these geographic and transportation-related obstacles contributed to both retention and linkage gaps.

“Simply because of the transportation situation. You don’t make it to the appointments because it’s going to take too long on the bus or you won’t make it back in time to pick up the kids at school.” – Participant from Focus Group #3

Social, economic and cultural factors

Although women in our study placed importance on protecting their own health, and the health of their children including those in utero, most said it was difficult to prioritize everyone’s well-being when simultaneously faced with more pressing, day-to-day social, economic, and cultural challenges.

Unstable housing and homelessness Many participants said they were marginally housed or homeless during their pregnancy and described how this instability made attending prenatal care appointments difficult, particularly if they had to go to different locations for syphilis testing and results notification. Lacking constant housing also made it hard to maintain stable relationships, contributing to gaps in partner communication and notification.

“I was homeless, and when I found out I was pregnant, I didn’t go in right away to go see an Ob/Gyn. It actually happened, like, when I was 5 months…I didn’t do very well with going to appointments… I missed my appointments half the time.” – Participant from Focus Group #2

Economic instability Unemployment and having a low-income were also both presented by participants as obstacles to accessing and remaining in prenatal care. Both of these economic factors were associated with barriers mentioned previously (including lack of health insurance, inability to pay for transportation to clinics, medical fees) and linked with retention and linkage gaps.

Cultural barriers Language was a main component of culture and with the diversity of Kern County, language-related barriers, including limited literacy obstructed some participants’ communication with providers. These obstacles were described in relation to gaps in all stages of pregnant women’s access to and use of prenatal care experiences. Some of the Spanish-speaking participants, for instance, struggled to understand key components of the health advice they received from medical professionals.

“It was difficult because of the language. Almost the majority of pediatricians that I looked for do not speak my language. It was difficult to be able to understand the doctor, or with my baby’s pediatrician.” – Participant from Focus Group #5 Conducted in Spanish

Others failed to complete welfare service applications and critical medical documents.

“When they [pregnant women]’ve got to fill out a [welfare service] application, they can’t even read and write in Spanish. A lot of them. And it’s embarrassing and frustrating.” – Participant from Focus Group #3

One woman reflected on how her own use of health services was negatively impacted by limited cultural competence among staff at the Department of Human Services. She felt they lacked training on how to interact effectively with people from diverse backgrounds to deliver services that meet the social, cultural and linguistic needs of patients, including those with limited reading and writing skills, both in English and Spanish.

“They’ll give you information but it’s in English. How are you going to understand it? And you ask them “Is there a translation?” “No, we only have the information in English.” It’s embarrassing for people and it’s frustrating, especially when you’ve got somebody like that being rude.” – Participant from Focus Group #5 Conducted in Spanish

Substance use and co-occurring intimate partner/domestic violence

Participants shared that a small but concerning number of women they knew used substances during pregnancy. Use of alcohol and marijuana were mentioned in focus groups and participants believed methamphetamines were the most commonly used illicit drug in Kern County, given their high availability and relatively low cost. Participants also felt methamphetamine and other drug use were germane to conversations about CS because it was believed to be associated with risky sexual behaviors like unprotected sex, and multiple-, concurrent sexual partners, and correlated to increase in vulnerability for STIs including syphilis.

“A lot of people are shooting meth and going around and screwing everybody. If you are in a circle of people who uses drugs and have a very promiscuous lifestyle, being on drugs clouds your judgment. Just because you take care of yourself doesn’t mean everybody else does.” – Participant from Focus Group #1

Drug use was also perceived to be linked with mistrust in the health, criminal justice and social welfare systems, and experiences of IPV/DV. Participants said pregnant women using drugs were consistently afraid of being reported to or interacting with health providers who could report their drug use, police officers who could arrest pregnant women, and Child Protected Services (CPS) who could take their children away. These fears were all described as barriers to entering/remaining in prenatal care and significant obstacles to having any tests done that required collection of biological samples (e.g., blood, urine). Participants said pregnant women using drugs would commonly isolate themselves from others and skip prenatal appointments to avoid the risk of being detected, arrested, imprisoned or of losing their baby as a result of their substance use. Participants narrated how friends or relatives who used drugs during pregnancy had intentionally avoided prenatal care, leading some to give birth to babies with adverse health outcomes.

“My friend and two other girls, their babies were born with syphilis. My friend was drinking a lot of alcohol so she didn’t go to the doctor. They all thought they were going to get in trouble. They thought they would be reported. Due to that, there are 4 babies that are…going to be mentally disabled in their life because their moms were too scared to go to the doctor because they were on drugs or they had warrants out for their arrest.” – Participant from Focus Group #2

One participant narrated her own use of drugs during prior pregnancies and how it influenced her behavior during the recent pregnancy. She said she had become “paranoid” about going to prenatal care visits and having the requisite “pregnancy tests” completed as they posed the risk of her getting caught for drug use.

“I used drugs throughout a lot of my pregnancies…I was PARANOID about like giving up my current pee because of the drugs in it. So I was giving him [doctor] old pee [during] the entire pregnancy…It’s not hard to get prenatal care at all but the reason that a lot of us don’t do the prenatal care in the beginning is because we’re using drugs. I’ve done it with two of my kids. I didn’t get prenatal care with her until I was like seven months and then with my other one I had no prenatal care but, I had prenatal care with all my other ones. I would also falsify on SOME of the [urine] tests.” – Participant from Focus Group #3

Participants agreed that even when pregnant women who were using drugs were concerned with protecting their health through prenatal care, they were significantly more worried about the urine tests done during prenatal visits that could notify the provider of their drug use. Thus, this presented an obstacle to critical linkage steps in the CS prevention cascade.

Intimate partner violence and domestic violence (IPV/DV) was brought up in discussions as a perceived risk factor among women of reproductive age for both acquiring syphilis during pregnancy and transmitting it to their baby. Conversations on the links between STIs and IPV/DV, however, most heavily focused on increased vulnerability among women who used substances during pregnancy, particularly among young women who are under the age of 25 years. Participants believed women using drugs who had violent partners were afraid to seek “medical attention” for a few reasons. One, health providers are mandated reporters of IPV/DV and participants felt most abused women did not want their partner to be punished/arrested or have their children removed from the household.

“I’ve heard on so many occasions where girls that are pregnant and they are afraid. They’re afraid to go and seek medical attention because they are on drugs or there might be abuse going on. They’re scared because they [providers] are mandated reporters. I know that there are a lot, a lot of girls that just strictly because they are afraid to have their child taken from them or to face the reality of the situation. [Women are] afraid to go to the doctor.” – Participant from Focus Group #4

Second, abusive men were said to commonly control their pregnant female partner’s movement and this often included restricting them from going to appointments, including prenatal care visits. Third, women experiencing partner violence, whether in or out of the context of drug use, were said to be less likely to notify an abusive partner of potential syphilis exposure, out of fear of being blamed, hurt or punished in another way.

Participants spoke freely about how punitive approaches to substance use and IPV/DV deterred many pregnant women who used drugs from seeking all levels of prenatal care, as well as substance use treatment services. Explicitly addressing women’s concern regarding their drug use, treatment options, and scope of confidentiality was recommended by participants as a way to mitigate the pervasive fears that block many pregnant women who are using substances from accessing social, medical and prenatal care services.

“If there was something in forms, in line, saying, “Hey, you’re really not going to jail. We’re trying to help you.” The drug addicts out there who are pregnant or might be pregnant or have kids would be more open to going out there and getting HELP, instead of being scared to go get help for your child, and get it for you too.” – Participant from Focus Group #2

Providers’ perspectives on prenatal care and timely testing and treatment for syphilis

Each prenatal care provider interviewed was aware of the exponential increase in CS cases over the past few years in Kern County. It was their shared opinion that numerous factors contributed to the ongoing, uncontrolled epidemic. We organize findings from these interviews in three categories according to: (1) Providers’ perceptions of barriers complicating pregnant women’s ability to access syphilis screening and treatment; and (2) Inadequate prenatal care provider training on how to manage CS.

Providers’ perceptions of barriers complicating pregnant women’s ability to access syphilis screening and treatment

Providers identified a range of factors that reduced their patients’ ability to access, remain in and complete all recommended components of prenatal care, including all steps in the CS prevention cascade.

Housing instability and economic vulnerabilities Housing instability including homelessness was identified as a common challenge faced by pregnant women at high risk for CS. Providers narrated how their patients experiencing homelessness rarely received any prenatal care until the time of delivery and those who did come for prenatal care were hard to re-contact to arrange follow-up appointments. A common theme in interviews was a perceived urgency to focus on understanding how reproductive health services including prenatal care could be improved in a place like Kern County. Providers were concerned about their limited ability to access hard to reach, underserved pregnant women in the population who were geographically, culturally, and economically marginalized.

“She was a homeless person in her 20’s. She turned out to be having syphilis and gonorrhea. The test came back 2 days later after visit, and by then she was nowhere to be found. She didn’t respond. It happens often.” – Interview #1, Ob/Gyn

Stigma and shame surrounding social vulnerabilities Many providers observed how pregnant women using public assistance programs were more likely to experience gaps in the cascade of CS prevention. This was attributed to the geographic, socioeconomic and cultural factors mentioned from focus group findings. Additionally, providers believed lack of engagement in care was influenced by the strong and negative stigma surrounding the receipt of social welfare services, causing pregnant women to feel uncomfortable and embarrassed about seeking care from prenatal providers and revealing their use of social welfare benefits. They explained how issues surrounding their patients’ financial difficulties, as well as substance abuse often emerged during office visits and many pregnant women demonstrated feelings of shame surrounding these vulnerabilities.

“They were couch surfing. Some of them were at the homeless shelters. Working with homeless women or IV-using moms can be delicate because there’s so much shame around it, because you’ll see these moms wait until they’re 40 weeks to go in with zero prenatal care.” – Interview #5, Medical investigator

Distrust in medical system Another concern voiced by providers was that some pregnant women diagnosed with syphilis refused treatment, despite providers’ explanation about potential harms of untreated syphilis to a fetus.

“We follow them if they come in at the first visit, … then we let them know we’re still going to test you again in the second trimester or third trimester. This is the recommendations are not laws. We worked really hard on getting everyone on the same page including the women that are being tested… There are pregnant females that refuse to have treatment.” – Interview #4, Public health nurse

Providers suggested that reasons for avoiding syphilis treatment be investigated in future studies, both among both pregnant women and their male partners who were also reported to have refused testing and treatment. One provider narrated that there is a big linkage gap between positive syphilis test results and follow-up treatments due to miscommunication between medical providers and pregnant women arising from some pregnant women’s substance use and distrust in medical system.

Interviewer: After their last one [syphilis screening test], do they come back for a follow up for that [treatment, if tested positive for syphilis]?

Answer: That’s a BIG opportunity for improvement I think. Because the patients that we have that have syphilis, they’re not very compliant and they’re not willing to WAIT in an E.D. for treatment. And I think that’s a BIG issue. We always tell them to follow up with the Health Department and…if they need to come back here for treatment per recommendation from the Health Department, then of course we would treat them again. But sometimes the patients have psychiatric issues or have a problem with drug use. So they’re not thinking or acting very normally. They’ll come back and sometimes they can’t even…communicate to what they’re there for. So the communication–there’s a lot of miscommunication sometimes and opportunities are missed–. – Interview #8, Ob/Gyn

Substance use Similar to findings that emerged in the focus group discussions with pregnant/postpartum women, drug use was consistently brought up in the provider interviews as an issue intertwined with, and often worsening, other risk factors for CS, like transactional sex, incarceration, and poverty.

“Actual true sex workers…the reality is that a lot of them are pregnant and stay from place to place for drugs. It is NOT sex work in a traditional definition… They’re people that have a DRUG problem, and they’re people that their bodies become a commodity. The exchange for money or drugs or a place to stay. Those are the hardest ones to track because when you go from spot to spot, staying with this person because they have what you need and then you get kicked out, you know, or that person gets arrested or whatever you go to the next place.” – Interview #5, Medical investigator

Polydrug use (i.e., use of multiple types of illicit substances at one time) among pregnant patients was observed by numerous prenatal care providers who confirmed that methamphetamines were commonly used, in addition to opiates, alcohol, cigarettes, and marijuana.

“I would say there are co-occurring, multiple substances. If they weren’t opiates, they may have been smoking weed. Or methamphetamines. We can point to that mothers drop off from smoking and other substances. But there are folks continue to use that. What we’ve seen or heard about a lot is alcohol and meth.” – Interview #10, Public health nurse

Provider perspectives corroborated findings from focus groups, for instance that pregnant women using substances commonly avoided prenatal care visits to avoid tests that could reveal their drug use. Providers explained how difficult it was for them to ensure their patients received timely treatment and comprehensive prenatal care when their patients were facing such a large set of obstacles. They consistently referenced how the most at-risk pregnant patients in Kern County were lost at all stages in the cascade of CS prevention, beginning with those who did not appear for the first trimester visit, to those who were lost to follow-up and never presented for the third trimester testing.

Limited substance use disorder treatment facilities for pregnant women Protocols for managing pregnant women who tested positive for drug use, including weekly drug tests, supportive services to deal with withdrawal, helping patients adopt healthy life style choices through coaching and education were referenced during interviews. Several clinics in the region had drug treatment programs for pregnant women, including residential treatment services, but there weren’t enough resources to accommodate everyone in need.

“The pregnancy protocol [for substance misuse] would be that…they are meeting with our in-house physician once a month for our program… they’re on the treatment program and we would drug test them once a week until they gave birth.. They were being managed, and then they would we would be case-conferencing them, having an interdisciplinary team talking about their cases. Many people wanting to get into treatment, but not enough rooms… That’s one thing that we can—we can make happen for them.” – Interview #8, Ob/Gyn

While pregnancy could be leveraged as an opportunity to access drug treatment, one provider pointed out that few drug treatment facilities exist in the region, which they felt resulted in high levels of continued substance misuse among pregnant women and related maternal and congenital complications, with involvement of CPS as a last repercussion.

Inadequate prenatal care provider training on how to manage congenital syphilis

Although prenatal care providers said they received updated STI information from online guidelines provided by the CDC and the American College of Obstetricians and Gynecologists (ACOG), most felt their knowledge of how to effectively manage CS was inadequate. Almost all providers interviewed said they had not received formal training on CS since their medical residency, which for some was decades ago. This gap was felt to negatively impact providers’ ability to adequately mitigate the CS epidemic in the region and among their patients.

Given the critical importance of CS prevention, prenatal care providers expressed desire to receive focused, ongoing training on syphilis treatment guidelines for pregnant women, encompassing screening, testing, test interpretation, patient and partner notification, and the recommended follow-up treatment regimen in the clinic in which they practice.

“I wish I had more I have been sent to a class or sent to a conference. I think it [syphilis screening test and treatment] could have been briefed up for me.” – Interview #2, Nurse practitioner

“I read CDC STD guidelines. I’m going according to that, but I have no formal training [focused on syphilis-specific training after residency.” – Interview #8, Ob/Gyn

Gaps in partner notification, screening and treatment for syphilis

Persons diagnosed with an STI are encouraged to notify their sex partner(s) to tell them about potential exposure and refer them for evaluation and treatment. Nonetheless, obstacles to communicating this information were repeatedly brought up by both pregnant/postpartum women and prenatal care providers as a gap in the CS prevention cascade in Kern County (Fig. 1). Promotion of conversation about and testing for syphilis were felt to be difficult due to intense stigma surrounding STIs. Common words women used when talking about STIs were “dirty” and “unclean” and providers emphasized how extensive moral judgement was placed on women and men who acquire an STI.

Most pregnant and postpartum women suggested they made efforts to notify partners but shared how difficult it was to persuade their husband/sex partner to get screened for syphilis, for a variety of reasons, including stress and stigma surrounding STIs and testing.

“It took me a lot to convince my husband…I told him “I want you to go and get an exam” [He said] “But, why? I am healthy.” I told him “Because it is important.” He said “You can do it, but I am good. Mistrusting my husband and everything until after the test result was revealed. His test took about two weeks for it to come, and those two weeks were eternal.” – Participant from Focus Group #5 Conducted in Spanish

Prenatal care providers also suggested they took steps to encourage their pregnant patients to notify their sex partner(s) about potential syphilis exposure and urge them to undergo testing and treatment. However, it was common perception that partner tracing, testing and prevention education were the responsibility of the local health department. Providers believed public health investigators were better placed to communicate with and influence the behaviors of their pregnant patients’ sex partners, and that prenatal care providers had obstructed ability to be effective in this step of the prevention cascade. Providers often felt the most they could do was encourage their patients to tell their sexual partners and suggest they get tested.

I don’t know what the Public Health law is in that regard. I do know that people will refuse the treatment. I’ve heard in one of our meetings, where a woman was tested positive and acknowledged that her partner was positive. They both knew it, but they didn’t want to be involved in any long-term engagement with the provider. They just wanted to get back to their lives that they would deal with it themselves. Time and time again, they were well aware of it but they chose to take that risk.” – Interview #6, Public health nurse