Participant eligibility and recruitment

This study was conducted as a qualitative investigation to assess factors that influence decision-making and behavior surrounding prenatal care and syphilis management among prenatal care providers and pregnant and postpartum persons in Kern County, CA. Kern County was selected because despite representing only 2.3% of CA state’s entire 2018 population, 17% of all congenital syphilis cases in CA were reported in Kern County [11]. A parallel study was conducted in East Baton Rouge, Louisiana and these findings have been published separately [12].

A relationship was established with all study partners and study participants prior to commencement. Participants were informed of the study aim: to learn about current prenatal care practices and beliefs in Kern County, a region of the US with high prevalence of congenital syphilis. Participants were informed of the study purpose: (1) to understand what interventions/programs could be developed and implemented to help pregnant women protect their own health and the health of their babies; and (2) to develop guidelines for prenatal care providers to effectively communicate with their patients at highest risk for syphilis infection and transmission so as to offer the best prevention and treatment services. Finally, participants were informed of the study goals: (1) to learn what women in communities with high prevalence of sexually transmitted infections do before pregnancy and during pregnancy to keep their babies healthy; and (2) to learn the professional practices of antenatal care providers, related to STI prevention and treatment, and where providers access information about STI prevention. No characteristics about the interviewer were reported.

All recruitment and data collection activities in the Kern County study setting were conducted by two bilingual (English-Spanish) masters level researchers from California State University, Bakersfield (hereafter referred to as field researchers) and the Principal Investigator (PI) of the study who was a faculty member at the University of California, San Diego School of Medicine (UCSD-SOM). Pregnant and postpartum persons were primarily recruited from a residential treatment program, a transitional sober living community, a domestic violence resource center, and from the general community of Spanish speaking individuals through use of flyers and posters in lobbies of respective recruitment sites. Some participants were recruited through snowball sampling, a nonrandom sampling technique whereby initial participants helped identify additional study participants. While this technique does not provide an equal opportunity for inclusion, we tried to avoid some of the biases inherent to snowball sampling by ensuring all participants (including both those purposefully selected by the research team, as well as those identified by existing participants) met a set of eligibility criteria. Eligibility criteria for pregnant and postpartum participants included: (1) 18 years and older; (2) receiving prenatal or early postnatal care in Kern County; (3) resident of Kern County for at least 6 months; (4) currently pregnant or delivered a child within the previous 12 months; (5) “high-risk”, i.e. had a history of syphilis infection, incarceration, current or previous substance use, and/or multiple sex partners; (6) have a means of being contacted; and (7) consent to study involvement. Approximately 10 women across all recruitment groups declined participation because they lacked the time or did not feel comfortable discussing sexual health in a group setting.

Participants were only interviewed one time so there was no follow up and thus, no attrition. A total of 5 focus-group-discussion (FGDs) were conducted with a total of 42 pregnant or recently pregnant persons. Pregnant and postpartum participants received a $25 gift card for their time. Prenatal care providers were recruited from the primary health systems in Kern County: Omni Family Health, Clinica Sierra Vista, and Kern Medical. Eligibility criteria for prenatal care providers included (1) current prenatal care provider in Kern County and active for ≥ 6 months; (2) ≥ 50% of their patient population is considered “high risk”; (3) have a means of being contacted; and (4) consent to study involvement. We were unable to contact many of the prenatal care participants we had hoped to recruit because they did not respond to our contact efforts, but there were no providers who refused to participate. A total of 8 in-depth-interviews (IDIs) were conducted with 8 prenatal care providers. Prenatal care providers received a $50 gift card for their time.

Data collection

All data were collected between September 2018 and January 2019. IDIs were conducted with prenatal care providers in person or on the telephone with a trained field researcher. IDIs were asked to share their age, gender/gender identify, medical profession, and years of practice. A semi-structured question guide was used and provided to interviewees to focus the discussion on the provider’s clinical knowledge of syphilis and management during pregnancy, and their opinions of structural determinants of their patients’ health-seeking behavior. The IDIs were audio recorded and later transcribed with participant consent. Each IDI lasted approximately 60 minutes. FGDs with pregnant and postpartum participants were conducted at the location from which the participants were recruited and were moderated by one field researcher while a second assisted with logistics of the group (e.g., managing latecomers). FGD participants were asked to if they identified as Hispanic, Latino/a or of Spanish origin; FGD participants were asked to describe their race and prompted to select from all that apply from the following: White, Black/African American, American Indian/Alaska Native, Asian, Pacific Islander, Other (Specify). A semi-structured question guide was used and provided to interviewees to focus the discussion on their knowledge and perceptions of sexually transmitted infections (overall) and syphilis (more specifically), their beliefs on trends of accessing prenatal care in Kern County, and what they thought were the biggest challenges in accessing and utilizing healthcare in their community. The FGDs were audio recorded and later transcribed with participant consent. One FGD was conducted in Spanish; during the transcription process, the audio recordings were first translated into English by MN and later went through a quality checking process by a Spanish speaking research assistant at UCSD who made corrections as needed. Each FGD lasted approximately 90 minutes. No one else other than the researcher and participants were present during interviews. Interview transcripts were not returned to participants, and participants did not provide feedback on the findings. No repeat interviews were carried out. Data was collected until saturation—or the point at which the retrieval of additional perspectives or information ceased—was met.

Qualitative thematic analysis

Interview transcripts were read, coded and analyzed by EC, CS and JW to establish inter-rater reliability and reproducibility. Reflexive thematic analysis and deductive methodology as described by Braun and Clarke was employed for qualitative data analysis to identify structural determinants of congenital syphilis vulnerability [13]. A coding system, informed by the Structural Competency Working Group and Reproductive Justice Frameworks, was developed to identify structural determinants of congenital syphilis vulnerability from interviews [14, 15]. A unique codebook was developed for analysis of IDIs with prenatal care providers and FGDs with pregnant and postpartum persons. We employed Dedoose® (SocioCultural Research Consultants, UCLA), a computer assisted qualitative data analysis software, to code interview transcripts which were then exported to Microsoft® Excel. Themes common to interviews with pregnant and postpartum persons included language barriers, transportation barriers, economic systems, judicial/carceral systems, immigration systems, gender-based sexual or domestic violence, insurance status, and health education systems. Themes common to interviews with prenatal care providers included clinical education and training in sexually transmitted infections, management of syphilis in pregnancy, and funding and availability of syphilis testing and treatment services. EC, CS, SC reviewed coded interviews separately to avoid bias; collective discussions were later held between EC, CS, SC, MPG, and JW to discuss and resolve coding differences and to assess relevance to clinical outcome. As candidate themes emerged from coded interviews, they were compared against the original dataset for internal and external validity.

Ethics

All research materials were developed in collaboration with the Centers for Disease Control and Prevention and March of Dimes. Research materials were approved by the Centers for Disease Control and Prevention Office of Management and Budget. Research materials were reviewed and approved by the University of California, San Diego Human Research Protections Program and the Tulane University Human Research Protection Program. Written consent was obtained from all participants. A copy of the consent form and a description of the study was provided to all participants. Contact information of the principal investigator and the approving institutional review boards was provided to participants to call with questions or concerns.

Patient-level structural barrier: Poverty

Burdens of poverty presented major barriers to patients seeking prenatal care. Co-pays and out-of-pocket payments deterred patients from seeking medical care. One interviewee explained, “I have been living out in the streets and I got cut off from the Department of Human Services…I didn’t really go to the doctor or I would get billed” (pregnant participant, residential rehabilitation program). Many women in our study expressed that they were unable to take time off from their job for a prenatal appointment because of a lack of paid leave. Unreliable means of transportation made it difficult to get to appointments, or interfered with other employment and family demands: “You don’t make it to the appointments because it’s going to take too long on the bus or you know you won’t make it back in time or you don’t have nobody to pick up the kids at school” (pregnant participant, transitional living community). Housing insecurity meant providers could not reliably contact patients, resulting in loss-to-follow up: “She was a homeless person in her 20s…by the time the test came back, she was nowhere to be found” (prenatal care provider); “You don’t always have a phone or know they are not going to make it back in” (medical investigator).

Patient-level structural barrier: Stigma

Stigma around drug use in pregnancy and fear of legal action led many patients to under-utilize prenatal care services. One interviewee from the transitional living community told us, “[Women] are afraid to go and seek medical attention because they are on drugs or because there might be abuse going on and they’re scared because [doctors] are mandated reporters. There are a lot of girls that don’t go because they are afraid to have their child taken from them” (postpartum participant, transitional living community). Interviews with prenatal providers revealed empathy toward this fear and a recognition of fault: “Health care providers are focused on the child primarily… If all we’re doing is running on the same treadmill of making sure the child is as safe as possible but not engaging with the mother, we’re not doing what we should be doing” (prenatal care provider).

Patient-level structural barrier: Citizenship status

Fear of deportation and hesitancy to share immigration details with medical providers was another major deterrent in seeking prenatal care. Pregnant persons without documentation were afraid of detainment at medical offices by Immigration and Customs Enforcement officials: “For people in this country without immigration papers, it’s difficult…Due to the negative political climate, oftentimes a person prefers to keep quiet before talking with the doctor” (Spanish-speaking pregnant participant, community). Prenatal providers attempted to quell these fears, but with minimal success: “I could tell them, ‘Oh, you shouldn’t be afraid. You can come to the clinic. Nobody’s going to catch you if you don’t have documentation.’…they still don’t believe it” (prenatal care provider).

Patient-level structural barrier: Lack of healthcare coverage

Pregnant and postpartum participants described a number of reasons for lack of healthcare coverage, including unemployment and unawareness of affordable healthcare coverage options: “When I got pregnant I didn’t [see a doctor]. I didn’t know I could get health insurance right away…I was young” (postpartum participant, domestic violence and sexual assault organization). Immigration status was another barrier to attaining healthcare coverage: “It’s much easier for someone born here to get MediCal, especially with a social security card and ID. Someone who was not born here has to jump through a lot of hoops to get MediCal” (postpartum participant, residential rehabilitation program). For many, incarceration and the correctional health system was their first presentation to primary care. A postpartum participant shared, “I’m grateful that I went to jail cause I got the medical attention that I needed. When I wasn’t in custody I applied for MediCal so I could get prenatal care, but it was very difficult” (postpartum participant, transitional living community).

Patient-level structural barrier: Low sexual health literacy

Major gaps in knowledge of sexually transmitted infections and poor awareness of the complications in pregnancy were apparent from interviews. The following are responses from pregnant and postpartum participants at a nonresidential rehabilitation program to the question, “How do STDs (sexually transmitted diseases) start?”:

“Someone’s dirty.”

“I know it’s sex but how does the person with the sex get it?”

“I think chlamydia is like dirty sex.”

“Woah! I thought that was syphilis.”

“Gonorrhea sounds gross.”

“The clap.”

“It sounds green.”

Lack of a standard and comprehensive sexual health curriculum led many participants to seek and depend on non-scientific information from internet sources, colloquial folk-tales, peer word-of-mouth, and community crisis pregnancy centers which persuade women to choose adoption or parenting instead of an abortion [16]. Prenatal care providers expressed concerns about the reliability, credibility and validity of the information around sexual health and pregnancy their patients received. Regarding crisis pregnancy centers specifically, prenatal care providers expressed concern that the non-medically licensed facilities operating under a faith-based organization were providing inaccurate and propagandic information: “[Crisis pregnancy centers] are trying to counteract anyone getting an abortion, but they’re women’s clinics run by churches. They hurry up and give you an ultrasound and say you’ll see your baby. You will want to get rid of your baby but they don’t talk about congenital syphilis there” (prenatal care provider). Stigma around sexually transmitted infections left many patients believing they were unworthy of treatment, or feared having its documentation in their chart for insurance and legal reasons: “In all honesty, it’s what they believe in themselves and their self-worth. If they believe that they’re not worthy of treatment, they stop themselves” (prenatal care provider).

Patient-level structural barrier: Gender inequality

Complex sexual relationships (i.e. transactional sex, gender based domestic violence, or multiple sexual partners) and gendered dynamics (giving men higher status than women) in medical settings left many pregnant persons with low decision making power to seek prenatal care. A medical investigator recalled how one patient was given strict curfews and protocols by her sex partner to follow: “I would see her frequently. The person that was controlling her would let her go to the particular place that I was at or her father’s home, and that was it. And she had an hour to be back or he’d come looking for her. And you try the best that you can. We got her linked up to some services for a while, and for whatever reason because she was pregnant with his kid, she ended up back in that situation again” (medical investigator).

Provider-level structural barrier: Limited guidance on clinical management of syphilis in pregnancy

While the Centers for Disease Control and the American College of Obstetricians and Gynecologists have set forth clear guidelines on the management of syphilis in pregnancy, there was low awareness of these guidelines among the prenatal care providers interviewed in this study. Lack of infrastructure to disseminate knowledge of and training for existing guidelines left many prenatal care providers feeling ill-equipped to manage syphilis in pregnancy: “I never received formal training on treatment. It was merely a conversation with Public Health” (prenatal care provider). As a result, a large number of prenatal providers referred patients with syphilis to the Kern County Department of Public Health and Medical Center. Overburdened, these medical centers often could not schedule appointments “for 3 or 4 months” after the referral (medical investigator), resulting in untimely prenatal care and low patient retainment. A public health official described disempowerment of providers: “The providers will be all, ‘This is a high-risk thing. We can’t do this. We’re going to send you to Kern Medical… They’re sending women over there because they’re thinking ‘Oh my god, I can’t—I can’t do this’” (medical investigator).

Provider-level structural barrier: Decay in public health infrastructure

A challenge characterizing the congenital syphilis epidemic included a lack of public health and preventive care infrastructure. A prenatal care provider described inadequate resource allocation to congenital syphilis prevention as “a shame, because I think it shouldn’t be conceived as an expense to get people treated. It’s an investment because these people are American citizens, born with a disability, and physically ill for the rest of their lives. I think there should be some money. They pick a couple of million dollars in this issue, and you can save BILLIONS of dollars in the future” (prenatal care provider). The high cost and burdensome storage requirements of Bicillin® was a major contributor to this resource shortage. Providers described a tendency to rely on County Health Departments to buy and store Bicillin®, rather than purchasing and storing within the clinic, for cost saving. A representative from the county Public Health Department told us, “One of the big barriers [to congenital syphilis prevention] is that we have Bicillin because we’re the Health Department. Doctors’ offices don’t often have it because it costs a lot and it has to be held at certain temps and they may not have room for it” (medical investigator).

Provider-level structural barrier: Inadequate support for managing patients’ social comorbidities

Prenatal care providers described the challenge of managing the complex medical and social comorbidities of their patients with syphilis. Providers estimated 50–80% of their patients with syphilis were lost to follow-up: “It was very difficult to have these women be committed or follow through. I would say less than 20 percent were actually compliant” (prenatal care provider). Comorbid alcohol and substance use, housing insecurity and competing priorities secondary to poverty (e.g. food insecurity, unstable housing, unreliable transportation, inconsistent income) were described as contributors to “non-compliance” with treatment and discontinuities in prenatal care.