Beyond Free Screening: Structural Barriers to Follow-Up Cervical Cancer Care Among Uninsured Hispanic Women in Minnesota,2020-2021

Project Design and Approach

The study’s community–academic research team included 1 postdoctoral fellow at a large university and 4 members of a nonprofit organization in Minnesota dedicated to supporting the Hispanic community by generating relevant research with the hope of influencing public policy. Among members of the team, 4 identified as female and 1 as male, 3 identified as Hispanic/Latino, 2 identified as non-Hispanic White, and all had college degrees. The team modeled the study after the social-ecological model, ²⁴ which provided a framework to structure the interview questions and examine how personal beliefs, social relationships, community environments, and institutional or policy contexts collectively shaped patients’ abilities to complete follow-up care after abnormal cervical cancer screening results.

The University of Minnesota Institutional Review Board reviewed the study and deemed the study exempt from formal review because the study was considered minimal risk with an adult population (STUDY00011342). The study protocols aligned with the principles of the Declaration of Helsinki. Study participants provided informed consent.

Project Advisory Board

The community–academic team selected 5 self-identified Hispanic women to form a project advisory board to advise the team and guide the research. Members came from rural and urban areas and included a Sage worker, a health promotion specialist, community health promoters and leaders, and a senior researcher. The board met 3 times to set study goals, review focus groups and interview questions, interpret preliminary results, and suggest dissemination plans.

Focus Group Participants

Sage provided a list of potential participants who met the study eligibility criteria: cisgender women who identified as Latina/Hispanic, were aged 40 to 64 years, were uninsured or underinsured, had income at ≤250% of the federal poverty level, and had been screened for cervical cancer through Sage during the past 10 years. Once authorized by Sage, the study team contacted potential participants by telephone using a standardized call script. The script introduced the study name, affiliated organizations, and objective and stressed the voluntary nature of participation. The team called approximately 80 women, and 23 women agreed to participate. Women who did not participate either did not answer repeated telephone calls or declined participation for personal reasons.

From fall 2020 through spring 2021, 23 Hispanic/Latina women participated in 1 of 5 focus groups, which were conducted virtually because of COVID-19 pandemic restrictions. Two groups included women from rural areas, 2 groups included women from urban areas, and 1 group included women from rural and urban areas. Two team members led discussions in Spanish that lasted approximately 90 minutes and followed a semi-structured interview guide, allowing flexibility for participants to share personal and secondhand experiences. The team continued data collection until thematic saturation was reached, defined as no new themes emerging across successive focus groups. Before interviews, participants completed a socio-demographic survey. Participants received a $20 cash card.

Key Informant Interviews

The community–academic team’s and project advisory board’s preliminary analysis of the focus group data revealed analytical gaps in findings; therefore, the project advisory board suggested collection of data from key informants involved in the delivery of Sage program services, including clinical care, patient navigation, and program administration, to address these gaps. Although the team did not collect formal demographic characteristics from the 7 key informants who participated, during conversations, all key informants self-identified as women, 5 identified as Latina/Hispanic, and 2 identified as non-Hispanic White or non-Hispanic Other. All key informants had experience in providing cervical cancer screening services, including as a clinic administrator, patient navigator, community outreach specialist, nurse practitioner, and family physician. Two team members who were trained in qualitative methods conducted the in-depth interviews online in the key informant’s preferred language using a semi-structured guide developed with the project advisory board. Interviews lasted from 20 to 45 minutes, which the team recorded for analyses.

Data Analyses

The community–academic team audio-recorded and transcribed verbatim the focus group sessions and key informant interviews in the original language (a technique proposed by Elderkin-Thompson and Waitzkin ²⁵ ). We used pseudonyms to preserve anonymity. We used Stata version 16.1 (StataCorp LLC) to summarize demographic survey data.

Three bilingual researchers (A.J., R.G., G.B.) independently reviewed transcripts and conducted inductive coding by using hand coding in Microsoft Word. The group used recurring ideas to inform development of a preliminary coding framework, which they piloted and refined through team discussions. The group (A.J., M.C.Z., R.G., G.B.) applied the finalized coding system to the full dataset and coded at least 1 transcript independently to cross-check the process. The team used consensus to resolve discrepancies. The team collaboratively agreed on final themes; thematic write-ups emphasized differences in responses and opinions across participants while maintaining confidentiality. The team achieved triangulation by integrating focus group data with key informant interviews across multiple levels of cervical cancer screening services.

Reliance on Community Clinics and Patient Navigators

Community health clinics offering Sage services increased cervical cancer screening uptake among Hispanic women in Minnesota by reducing screening barriers through affordable services, having bilingual staff or interpreter access, and having patient navigators. Participants commonly reported that initial screenings, such as Pap tests, were routinely conducted at community clinics where staff were familiar with Sage and the necessary paperwork (Table 2).

Many community clinic administrators reported having someone who was almost exclusively dedicated to overseeing Sage cases and noted that this person was crucial in preventing loss of follow-up among Hispanic patients. Study participants highlighted the dedicated person’s role in scheduling follow-ups, handling communication, and resolving billing issues. However, dependency on patient navigators often led to a heavy workload for patient navigators outside of working hours, which was usually not compensated, raising concerns about sustainability. As noted by a key informant (a patient navigator), “I’m already doing that practically on my own and without receiving any reward from the program, from Sage.” In the social-ecological model, these examples of support reflected community- and organizational-level influences, where clinic infrastructure and sustained interpersonal support shape individual follow-up behaviors.

Barriers to Scheduling and Attending Follow-Up Appointments at Clinics Outside of Community Clinics

Participants noted that Pap tests were performed at community clinics; however, if further testing (eg, colposcopy) was needed after receiving abnormal results, patients were often referred to centers outside of community clinics. Participants described a sharp decline in support once referred to hospitals or specialists outside of their community clinics, as these centers often lacked bilingual staff or knowledge of Sage services (Table 2). Specifically, many focus group participants emphasized their preference for direct communication from community clinics, something that outside centers did not provide. Printed communication, often in English, placed the burden of navigating the system on the patient, whereas direct communication removed these barriers, facilitated scheduling and translation, and allowed immediate answers to questions. A key informant said, “That’s why I often tell you that communicating with people verbally is much better than using a piece of paper, because if they don’t know how to read, they won’t tell you ‘I don’t know how to read,’ and the paper will end up in the trash.”

Participants from rural areas listed more barriers to follow-up care than participants from urban areas, including transportation challenges and limited awareness of Sage services, which compounded barriers to accessing care (Table 2). In the social-ecological model, these barriers operated at the community/organizational and societal/structural levels, because institutional communication practices and access constraints directly affect a patient’s ability to engage in follow-up care.

Negative Health Care Experiences That Deterred Further Care

Past negative experiences, particularly misuse of interpreters (or forgoing an interpreter out of ease for the health care provider), miscommunication of results, and perceived stigma when requesting Sage paperwork, shaped participants’ willingness to pursue follow-up care (Table 2). One focus group participant described requesting Sage paperwork at a hospital and being met with disdain by the front desk: “No, we don’t have those pages here.” Many also reported embarrassment or fear of discrimination, leading to delayed or avoided appointments despite abnormal results.

Intertwined in many participants’ stories were examples of perceived bias against individuals because of their use of Sage services or their socioeconomic status. Despite differences in level of knowledge about Sage services, all participants agreed that negative past experiences during health care appointments deterred them from seeking future care (Table 2). In the social-ecological model, these experiences aligned with relationship-level influences, where interpersonal interactions in health care settings shape individual trust and willingness to pursue further care.

Frustration and Apprehension Due to Billing Confusion

Participants expressed confusion and anxiety about medical bills despite Sage covering the costs of all screening and diagnostic services (Table 2). Some participants received medical bills as a result of incidental findings not covered by Sage, whereas others were mistakenly billed by health care facilities unfamiliar with Sage processes and coverage, the latter occurring mostly when patients were referred to centers outside of their community clinics. Participants noted feeling stressed and shocked after they received unexpected bills for services that they believed were fully covered, which generated fear about pursuing follow-up care. Many participants also shared stories of friends or family members who had experienced similar billing issues, reinforcing apprehension toward the health care system. As explained by a focus group participant after her friend received a bill resulting from a Sage-covered diagnostic test, “I can’t explain why she got the bill and now she fears using Sage services. . . . There must be many who do not dare enter this service that is totally free for you.” These experiences eroded trust in the program and discouraged future follow-up, creating a paradox where a “free” service still generated financial fear. In the social-ecological model, this confusion reflected societal/structural-level influences, as program implementation and billing practices translated into individual-level fear and disengagement from care.

Strengths and Limitations

This study had several strengths. First, we engaged Hispanic women from rural and urban areas of Minnesota, ensuring a diverse range of perspectives by age, education, and language ability. Second, the independence of our research team from Sage or the health systems providing Sage services fostered candid responses, and the inclusion of key informants offered multilevel insights into Sage operations. Third, conducting interviews in participants’ preferred language further strengthened data quality.

Our study also had several limitations. First, the sample size was small, which limited generalizability. Second, having virtual focus groups during the COVID-19 pandemic may have affected participation. Third, by focusing exclusively on Hispanic women in Sage, our findings may not extend to other populations or programs. Future studies should expand recruitment and consider in-person data collection to deepen engagement. Although the data were collected approximately 5 years ago, data captured experiences during a pivotal moment when the health care system was under strain from the COVID-19 pandemic and the Sage program was important. This timing provides insight into how systemic barriers persist even within a safety-net program during periods when access to care is fragile and patients experience reduced clinic availability, transportation barriers, financial instability, and racial and ethnic inequities.