Cervical Cancer Prevention and Treatment Needs among Hispanic Women Living on the US-Mexico Border

Abstract

Cervical cancer is the fourth most common type of female cancer and has a disproportionate impact on Hispanic women living on the US-Mexico border, especially those who are migrants or low-income. However, cervical cancer is primarily caused by the human papillomavirus (HPV), a sexually transmitted infection that can be successfully prevented and treated early with vaccination and screening. Several studies have explored factors affecting HPV prevention and cervical cancer screening among Hispanic women, but the experiences of Hispanic women who have had cervical cancer have rarely been studied. This paper will present the experiences of Hispanic women (N = 10) who survived cervical cancer, including barriers to care, services needed and received, self-care measures taken, and a series of recommendations for policy makers and the surrounding medical community to help prevent and treat this illness that, without proper treatment, can be fatal.

Plain Language Summary

Salient cervical cancer prevention and treatment needs among Hispanic women?

The purpose of this study is to reveal the personal experiences of Hispanic women living on the US-Mexico border who have survived cervical cancer in order to bring awareness to cervical cancer and HPV prevention and treatment needs on both individual and societal levels. The researchers used semistructured interviews that included a sociodemographic questionnaire and open-ended questions in order to gather information from participants. The researchers concluded that Hispanic cervical cancer survivors are a diverse population and have unique experiences and needs during and after treatment, contributing to their overall quality of life. This study has several policy and practice implications, including alternative treatment options, management of adverse effects, and more culturally competent healthcare professionals. The results of this study cannot be generalized beyond the specific study population.

Cervical cancer continues to be the fourth most common type of female cancer, with around 600,000 new diagnoses and 340,000 fatalities annually (Burmeister et al., 2022; Cascardi et al., 2022; Desai et al., 2022). The American Cancer Society (ACS, 2023) estimates that 13,960 people in the US alone will be diagnosed with cervical cancer, and about 3,410 will die from it. However, vaccination and regular screening methods that can detect abnormalities in the cervix before or when cancer develops have overall succeeded in bringing down worldwide mortalities by about 70-80%, with high-income countries like the United States benefitting from national policies like Medicaid expansion and the Affordable Care Act (ACS, 2023; Allahqoli et al., 2022; Desai et al., 2022; McDowell, 2023; Milio, 2022; Suk et al., 2022). Even more recently, HPV testing has been recommended as a stand-alone option for screening in women over 30 years old (Garg et al., 2020). Despite this, these more industrialized areas of the world still suffer from disparities within their own populations, with disproportionately low screening and vaccination rates among people of color, members of the LGBTQ+ community, and individuals with low income and who live in rural areas (ACS, 2023; Allahqoli et al., 2022; Desai et al., 2022; McDowell, 2023; Ramos-Pibernus et al., 2021).

Causes and Risk Factors of Cervical Cancer

High-risk types of the human papillomavirus, which is primarily a sexually transmitted disease, are correlated with almost all cases of cervical cancer (ACS, 2023; Burmeister et al., 2022; Cascardi et al., 2022; Desai et al., 2022; Milio, 2022; Monti et al., 2022). Factors that increase risk of HPV or cervical cancer include estrogen fluctuations (numerous causes), obesity, having multiple sexual partners (although infection can still occur in monogamous people), smoking, having had chlamydia, not being screened regularly, being HIV-positive, and family history of cervical cancer (ACS, 2023; Allahqoli et al., 2022; Amboree et al., 2023; Cascardi et al., 2022; Desai et al., 2022; Milio, 2022; Ramos-Pibernus et al., 2021).

Barriers to Screening and Vaccination

Research literature reveals a breadth of information regarding cervical cancer screening beliefs and behaviors (Calderón-Mora et al., 2020; Desai et al., 2022; Giuliano, 2023; Shokar et al., 2021; Silvera et al., 2023; Stenzel et al., 2022; Suk et al., 2022; Zeno et al., 2022). Many reasons why people do not get screened include lack of healthcare system literacy; lack of insurance; resource and logistic barriers including provider shortages and lack of capacity, communication, coordination, and facility access; fear of and a fatalistic attitude about cancer; linguistic, religious, and cultural barriers including perceived discrimination; feeling less susceptible; fearing that the test will be painful or uncomfortable; lack of confidence or knowledge about cervical cancer, HPV, and test availability; negative interactions with healthcare providers; and partner disapproval (Allahqoli et al., 2022; Desai et al., 2022; Makadzange et al., 2022; Ramos-Pibernus et al., 2021; Silvera et al., 2022; Stenzel et al., 2022; Suk et al., 2022; Zeno et al., 2022). The most common reason is lack of knowledge (Garg et al., 2020; Suk et al., 2022). In order to increase the number of people who get screened and the number of timely cervical cancer diagnoses, researchers suggest the expansion of surveillance systems; using reminder mechanisms; and developing community-based, culturally tailored intervention programs including health education campaigns and home visits (Bruni et al., 2022; Desai et al., 2022; Makadzange et al., 2022; Silvera et al., 2022; Suk et al., 2022; Zeno et al., 2022). They also recommend transitioning to using HPV-research-based screening (specifically DNA detection) rather than the Pap test because it is more cost-effective, can be self-collected, and allows high-grade persistent lesions to be identified earlier (ACS, 2023; Cascardi et al., 2022; Desai et al., 2022; Makadzange et al., 2022; Poniewierza & Panek, 2022; Ramos-Pibernus et al., 2021; Wood et al., 2018). Researchers encourage national/government funding of cervical cancer prevention programs (Poniewierza & Panek, 2022). Overall, the importance of making the elimination of cervical cancer an agenda is stressed (Bruni et al., 2022; Desai et al., 2022; Giuliano, 2023).

Several vaccines have been developed to protect against HPV infection types that cause 90% of cervical cancers (ACS, 2022, 2023; Desai et al., 2022; Giuliano, 2023). The most recent data reveals that the HPV vaccine has caused overall herd immunity and a 65% reduction in cervical cancer incidence rates for women ages 20-24 (McDowell, 2023). However, worldwide uptake of the vaccine is relatively low, especially among young adults (ACS, 2023; Desai et al., 2022; Thompson et al., 2018; World Health Organization, 2022). Some barriers that have been found to prevent individuals from getting vaccinated are lack of vaccine availability and coverage, persistent problems with cost, awareness, and access; lack of knowledge about the necessary vaccines; concern around the safety of the vaccine; and limited use of practices like reminder-recall systems that have been demonstrated to improve vaccine uptake (Calderón-Mora et al., 2020; Desai et al., 2022; Office of Infectious Disease and HIV/AIDS Policy, 2021; Wiyeh et al., 2019).

Hispanic Women and Cervical Cancer

HPV detection and vaccination are especially relevant and important for Hispanic women living in the US-Mexico border region because this population tends to experience much higher cervical cancer incidence and mortality rates than white women (Giuliano, 2023; Shokar et al., 2021; Silvera et al., 2023). For example, in El Paso, Texas, there are 10.1 cases of cervical cancer for every 100,000 females, which is much higher than the national average of 7.7 cases per 100,000 and places the city in the worst 25% of US counties for cervical cancer incidence rates (National Cancer Institute, 2021). The rate for Hispanic women in El Paso is 10.7 cases per 100,000, as compared to white women, with only 8.0 per 100,000. HPV screening rates have decreased for women overall in recent years, and women from racial and ethnic minority groups, especially Hispanic women, are less likely to receive adequate screening (Desai et al., 2022; McDowell, 2023; Suk et al., 2022). For El Paso in particular, where about 82% of the population identifies as Hispanic/Latino (United States Census Bureau, 2020), only about 30% of female patients between the ages of 15 and 64 who receive general health services at a federally qualified health center was screened for cervical cancer in 2021 (Health Resources & Services Administration, 2021). Additionally, studies have found that HPV vaccine rates are low among adult Hispanic women although over half have knowledge about its existence (about 5% of adult females vaccinated) (Calderón-Mora et al., 2020).

Factors that Increase Screening and Vaccination

Some factors that improve screening rates in Hispanic women include being recommended by a primary care physician or having had a well-woman visit in the last year; community outreach programs that are socially reinforced by Hispanic, bilingual promotoras de salud (lay health workers); print material in Spanish; use of culturally specific media and educational interventions that utilize role models; greater acculturation; believing that many other Hispanic women also get Pap tests and hearing positive stories from them; being able to collect the test sample oneself; spousal encouragement; intention to screen; and having health insurance (Calderón-Mora et al., 2020; Desai et al., 2022; Garg et al., 2020; Makadzange et al., 2022; Shokar et al., 2021; Suk et al., 2022; Wood et al., 2018; Zeno et al., 2022). Increasing demand for screening involves using reminder and recall systems, incentives, and both one-on-one and group education (Community Preventive Services Task Force, 2022). Increasing access requires reducing structural barriers (such as providing language translation and transportation services) and out-of-pocket costs.

Overall, the proportion of teenagers ages 13-15 who receive the recommended doses of the HPV vaccine is increasing, with 57.6% of Hispanic/Latinx adolescents having received all three vaccine doses (US Department of Health and Human Services, 2020). Strategies to increase vaccination rates for adolescents in general include using vaccine information systems, sending patient reminders, developing shorter dosing schedules, improving provider recommendation skills, and starting free federally funded vaccine programs in schools or opening school-based health centers (Poniewierza & Panek, 2022; Meisman et al., 2023; USDHHS, 2020). Culturally competent educational interventions would likely improve vaccination rates in racial/ethnic minority and other underserved populations as well (Calderón-Mora et al., 2020; Silvera et al., 2023). Finally, completion of the HPV vaccine series may be influenced by social determinants of health such as access to information, transportation for medical appointments, and medical care.

Treatment

Several treatment options for cervical cancer exist, including medical, surgical, and radiotherapy alternatives (ACS, 2023). Researchers have recently explored minimally invasive surgery (MIS) to treat early-stage cervical cancer due to its similarly low risk of death, quicker recovery time, and lower risk of complications compared to open surgery, although more data is needed to support this consensus (D’Oria et al., 2022). While cryotherapy, laser ablation, conization, hysterectomy, and chemo- and radiotherapy are the standards today, some studies have also explored innovative technologies such as immunotherapy, target therapy, and PARP inhibitors to treat cervical cancer (ACS, 2023; D’Oria et al., 2022; Milio, 2022; Poniewierza & Panek, 2022).

Study Aim and Research Questions

The goal of this study was to recruit N = 10 Hispanic women with a lived experience of cervical cancer and document their perspectives, their challenges, aspirations, and recommendations to improve access to screening and care in El Paso County through the use of the qualitative interview method. The study included two objectives: (1) Form an advisory committee of N = 8 key informants and decision makers to create awareness and highlight opportunities to present the project’s results and recommendations; and (2) document the experiences of N = 10 Hispanic women with a lived experience of cervical cancer in El Paso, Texas, as well as their health care and human service needs. This paper focuses on the second objective.

Our research questions included: (1) what are the barriers that Hispanic women with a lived experience of cervical cancer face in securing screenings and care in El Paso, Texas? And (2) what are the facilitators that help Hispanic women navigate their cervical cancer journey?

Methods and Materials

The Questionnaire and the Interview as Research Methods

Given the type of research questions and the phenomena we sought to study, we chose to use structured/semi-structured interviews including a sociodemographic (Table 1) questionnaire and other open-ended questions to collect information about participants’ experiences with cervical cancer. Interviews are a form of participatory mixed-method (qualitative and quantitative) research that allows the investigator to not only extract straightforward data about respondents but also explore trends and experiences, reveal themes, and build a holistic snapshot of individuals and the population they are a part of, all while allowing participants to answer using their own voice and express their own thoughts and feelings (DiCicco-Bloom & Crabtree, 2006; Jamshed, 2014). The investigators chose to incorporate elements of both sociodemographic, structured interviewing and participatory interviewing into one in-depth face-to-face interview that divulges a broader variety of information and creates a more “rich and comprehensive” study, in order to most effectively discover and thoroughly describe the unique barriers, facilitators, and healthcare and human service needs of our study population.

Table 1.

Sociodemographic Data.

Variable	N = 10	%
Age
30–40	1	10
40–50	3	30
50–60	3	30
60–70	3	30
Age when first diagnosed
20–30	3	30
30–40	2	20
40–50	5	50
Gender
Woman	10	100
Ethnicity
Hispanic a	10	100
Race
White b	7	70
Other	3	30
Marital status
Married	4	40
Divorced	2	20
Separated	2	20
Civil union	1	10
Widowed	1	10
Children
Two	3	30
Three	3	30
Four	4	40
Employment
Full-time	3	30
Part-time	3	30
Temporary	1	10
Unemployed	1	10
Retired	1	10
Occupation
Self-employ	2	20
Health worker	3	30
Housekeeping	1	10
SFBP c	1	10
Outreach d	1	10
Education completed
Elementary	2	20
High school	1	10
GED e	2	20
College	5	50
Annual income
< $10,000	5	50
$10,000–$25,000	2	20
$25,000–$50,000	3	30

a

One participant stated that she identifies as both Hispanic and Latina.

b

One participant stated that she identifies as both white and Native American.

c

School family-based partner (SFBP): Community agency who has a partnership with a local school and that works with students and their families.

d

Outreach: Social work in vulnerable communities to enhance health outcomes.

e

GED: General Educational Development

Surveying an intersectional marginalized population (Hispanic women, especially Hispanic migrant women with cervical cancer) can be more difficult due to a relative lack of published guidelines on how to conduct methodologically and ethically sound research with them (Castañeda & Smith, 2023). However, the investigators took measures to attain goals of conducting ethical research and benefitting participants by using the results of the study to inform healthcare providers and policymakers on alleviating barriers to cervical cancer prevention and care. Participants were also provided with a directory of local cervical oncology services. According to Castañeda and Smith (2023), research conducted with marginalized populations such as immigrants and the home free must adequately train research personnel, contain special considerations of sensitivity and respect, and acknowledge that the investigators are studying people who are not defined by their social condition.

Ethics Approval

An institutional review board approved this study as a cross-sectional study to document the perspectives, challenges, aspirations, and recommendations of Hispanic women with a lived experience of cervical cancer using the interview method to improve access to screening and care in El Paso County.

Before the actual interviews, the interviewers, including graduate research assistants and principal investigators, went through a training to prepare them to work with marginalized populations as well as a practice session to refine question wording and test audio recorder functionality. Interviews were held in person on the university campus and scheduled for a date and time that was convenient for the interviewee.

Questionnaire/Interview Design

The investigators designed the interview questions to explore the multifactorial challenges/barriers faced by Hispanic women survivors of cervical cancer to access early screenings and adequate care for cancer needs due to their disadvantaged background, underinsurance condition, and lack of health and mental health services. We wanted to both test this hypothesis and explore meaning and perceptions to gain a better understanding of these women’s unique experiences. The interview script was designed to avoid asking leading questions. The questionnaire was validated by IRB revision.

Sampling, Recruitment, and Engagement

A total of 10 adults (n = 10) participated in the study. Interviews were conducted between October 4 and November 11, 2022. The investigators used convenience and snowball sampling to recruit participants with the help of community-based partners and other organizations. The inclusion criteria consisted of people living in El Paso County who currently have or have a history of cervical cancer. The investigators originally recruited 19 participants, but only 10 enrolled, consented, and were interviewed. Participants received a stipend of $30 in the form of a gift card.

Interview Techniques, Transcription, and Analysis

All participants went over and signed an informed consent before starting the interview. Interviewers reminded participants that the data would be kept confidential to the best of their ability and that they could refuse to answer any question. For open-ended questions, participants were encouraged to share as much as possible/desired in response to each question rather than limiting them to a predetermined answer, except in the case of the multiple-choice questions that opened each interview. Interviewers asked clarifying questions throughout the interviews as needed and attempted to reduce any power relations by building rapport and remaining neutral but empathetic and attentive. They took notes of the participants’ answers as well as digitally recording the entire interview if consent was given. Only one of the 10 participants chose not to have her interview recorded. This participant gave the researchers permission to make note of her responses on paper and integrate them into the data analysis with the other recordings. Interviewees were given several opportunities to provide any additional information not offered by the scripted questions. The interviews each lasted between 15-30 minutes. Each interview was transcribed, then four researchers (two principal investigators and two graduate research assistants) used qualitative content analysis method (as described by Kuckartz, 2019) of coding each of the participants’ responses into thematic categories based on the main idea behind them, until data saturation was reached. The investigators developed categories in a concept-driven or deductive manner, meaning they were derived from the research questions and directly related to our interview guide.

Results

Participant Characteristics

Access to Healthcare and Insurance

Half of the interviewees had either used or needed medical, emotional, and/or mental healthcare in the 12 months prior to their interview. Many of them received those services from local clinics and federally qualified health centers, including a few university medical centers. Several of them had seen private practice physicians. They were able to receive a number of services, including general checkups, triglyceride checks, MRI scans, Pap tests, mammograms, psychotherapy, sonograms, blood tests, and other gynecological and oncological care. Only three of the interviewees had some form of insurance, including Medicaid/Obamacare. The other participants either received discounts based on their income or paid for services directly out-of-pocket with their own or their spouse’s income. One interviewee received services from free local health fairs hosted by the university.

Cancer History

Diagnosis

Almost all interviewees were in remission; only one participant was still in treatment at the time of her interview. Age at first diagnosis ranged from 24 to 48 years, with a mean age at first diagnosis of 37. Participants described their cancer as lasting from anywhere between two months and 10 years, with the mean duration being two years. Two interviewees said their cancer was diagnosed after they began to experience symptoms such as pain. One participant discovered she had cancer during a pregnancy check-up. Half of the interviewees were diagnosed using a Pap test or other screening method for cervical cancer. Two participants were diagnosed with a biopsy. All participants had cervical cancer, with a few also experiencing cancer in the stomach, eye, and uterus. Several of the interviewees mentioned first thinking of their children when they were diagnosed and how they would be taken care of if they were to die. They also mentioned it being an experience they would not wish upon anyone. One participant said she was very scared during her diagnosis because of her doctor’s lack of tact in delivering the news, and another impressed the importance of making it more clear to patients how serious cervical cancer is while also providing support and empathy. Some participants became depressed and panicked and believed they would die, while others found strength in their faith in God and were very confident that they would live.

Treatment and care

Interviewees experienced a number of challenges during their cancer treatment. Many of them mentioned pain and hormonal changes (for example, premature menopause and hot flashes) as well as the high cost of treatment. They also cited experiencing anxiety due to not receiving test results in a timely manner and a general lack of support, including from their spouses. One interviewee even experienced hospital malpractice. Another participant described continuing to struggle with maintaining a healthy diet to prevent the cancer from returning.

A few of the women participated in emotional therapy, support groups, and nutrition classes. One woman mentioned wanting to take advantage of support services but “I didn’t have time for any of that because I had to work for my children.” Most of them practiced self-care by eating healthier, getting adequate sleep, and starting an exercise routine. They also practiced resilience and maintaining a positive attitude. As one interviewee said, “You simply have to look in the mirror and say one more day, one more day, for my children and for me.” Other self-care activities that helped the participants in their trajectory of cancer included staying busy, following through with their medication regimen and treatment, as well as getting regular checkups and screening, limiting sun exposure, hobbies such as cooking and dancing, professional development, thoroughly cleaning and bandaging oneself after surgery, staying single, and practicing spirituality (having faith in God).

Health messages and communications

All of the women said they had heard information about the HPV vaccine. Interviewees were asked to give any advice they had regarding cervical cancer screening and general prevention for people of different ages, starting with young people less than 18 years old. They recommend that all young people under the age of 18 should be vaccinated (although some said that they previously thought the vaccine was only for girls), and that those who have a cervix and who are sexually active should be screened as well. They also suggest using condoms and limiting the number of sexual partners one has. Almost all of the participants mentioned that many young people believe they are “immune” from cervical cancer and HPV or that they won’t get it because they are young, but that they encourage them not to rule out that possibility. Some women also brought up the idea that many parents are against the HPV vaccine because it would “give their daughters permission to have sex”. However, the women interviewed in this study emphasize the importance of valuing children’s health over everything and of taking one’s health seriously no matter the age or sex.

Participants also suggested vaccination and regular screening, whether it be using a Pap smear or other method, for sexually active adults between the ages of 18 and 55, due to the difference that timely detection can make in treatment outcomes. They also recommend attending regular medical check-ups and focusing on one’s health in general. Several women mentioned the importance of doctors communicating with and correctly informing young people and people from certain populations: “Many times it’s a taboo because many of us who come from certain cultures, especially very traditional and conservative ones, hadn’t been told this before.” They list shame, lack of desire, and partner disapproval as common reasons why people may not receive cervical cancer screening and vaccination, and they encourage focusing on sending messages that will motivate these people. Some of the interviewees added other protective methods like minimizing the number of sexual partners. One participant emphasized getting surgery immediately upon diagnosis of cervical cancer, regardless of others’ opinions.

Many of the women advise parents and guardians to educate their children on risks of and other general information about HPV and cervical cancer, using reliable, evidence-based resources, and to get them vaccinated and screened as well. They expressed an overarching theme of supporting one’s children and one’s community. In the words of one participant, “If you love yourself, you love the community. It doesn’t matter if it’s someone you don’t know, you can talk about it.” She followed by talking about how important it is in the US-Mexico border region: “More than anything, we must educate our community. I know it’s not an easy task, but we have to start doing it, because here on the border, especially in El Paso… In our culture, many of us don’t want to talk about this.”

Finally, participants advised adults older than 56 years to educate their families and themselves about HPV and cervical cancer, even though they are no longer eligible for the vaccine or they may no longer be sexually active. The women do recommend continued screening for older people with a cervix because they can still be diagnosed with cervical cancer at that age.

Discussion

Several studies have explored the narratives and sociodemographic characteristics of cervical cancer survivors, but few have focused solely or specifically on Spanish-speaking individuals and the Hispanic population in general. Additionally, research on social determinants of health (SDOH) for HPV and cervical cancer in high-risk populations is limited (Chakravarthy et al., 2022; Maness & Thompson, 2019). This study is unique because it reveals the social determinants of health, distinctive experiences, and treatment needs of Hispanic women living in the US-Mexico border region.

Many interviewees brought up the long-term effects of different treatment modalities on physical and mental health and overall quality of life (QoL), including struggling with pain and menopausal symptoms. These results line up with a substantial literature demonstrating the adverse consequences of some of the most common treatments for cervical cancer, suggesting that many times medical professionals and cervical cancer patients may make treatment decisions based on short-term chances of success rather than considering long-term QoL outcomes (Hossain et al., 2015; Khalil et al., 2015; Lau et al., 2013; Millet, Moss, et al., 2022; Pfaendler et al., 2015). Despite being a mainstay in cervical cancer treatment, radiotherapy in particular poses the greatest risk of long-term bladder, bowel, sexual, menopausal, and psychosocial dysfunction; surgery and chemotherapy have mixed associations with high incidence of complications (Carter et al., 2013; Khalil et al., 2015; Mirabeau-Beale & Viswanathan, 2014; Mujahadatuljannah, 2019; Osann et al., 2014; Pfaendler et al., 2015). These treatment modalities often result in a QoL that is significantly less than among other gynecological cancer survivors and the general population (Ferrandina et al., 2012). However, medical/technological advancements allow greater confidence in today’s treatment modalities for cervical cancer, and some individuals are likely to value long-term QoL over short-term risk of failure, whereas providers are more conservative when it comes to risk of death and conversely are more likely to be tolerant of long-term complications (Pfaendler et al., 2015). Therefore, physicians should discuss short- and long-term advantages and disadvantages of all treatment options and provide supportive care not only throughout treatment but post-treatment as well so that patients are well-informed and therefore better able to manage disease sequelae in the future and determine the course of action they would like to take (Khalil et al., 2015; Lopes et al., 2020; Pfaendler et al., 2015; Vermeer et al., 2016). Kusy et al. (2013) have also applied innovative technologies in gene expression programming and neural networks to predict adverse effects of radical hysterectomy in cervical cancer patients, which could contribute to a better ability to weigh hysterectomy as an option when considering different treatment modalities.

In addition, the process of diagnosis was scary and anxiety provoking for many participants, which was only exacerbated by healthcare professionals’ mishandling of the situation. Research demonstrates that many cervical cancer patients could benefit from healthcare professionals delivering diagnoses with support, empathy, and helpful information (Millet, Moss, et al., 2022). This research results from the discovery that some health providers exhibit a lack of empathy and patience when explaining the screening process and dealing with sensitive procedures (Sethi et al., 2021). In addition to not communicating empathy, healthcare professionals have demonstrated a lack of capacity simply to understand the emotions of women in the first place (Srinath et al., 2023). Health professionals need training to ensure good communication and empathy for the care of women from different ethnic backgrounds to influence screening attendance and adherence as well as disease remission (Marlow et al., 2015).

Many of the women interviewed mentioned lack of social support after they were diagnosed and during treatment, which has been cited previously as a crucial barrier to QoL during and after experience with cancer (Khalil et al., 2015; Lopes et al., 2020; Shinan-Altman et al., 2022; Sun et al., 2021; Tejada et al., 2015; Yagmur & Duman, 2016). Research demonstrates that poor social support during cancer is correlated with significantly greater distress and feelings of abandonment as well as more maladaptive coping methods (Levkovich et al., 2022). Some of the women experienced a lack of support and interpersonal conflict with their spouses specifically that complicated their marriage relationship and their ability to deal with their cancer. Vermeer et al. (2016), Shinan-Altman et al. (2022), Millet, Moss, et al. (2022) and Levkovich et al. (2022) indicate that although many survivors of cervical cancer want their spouse to be both emotionally supportive and involved in their care, many patients and their partners experience psychosexual healthcare needs for information and care that often go unmet as well as communication difficulties and emotional issues such as distancing from one’s spouse, guilt, grief, and loneliness. They suggest that psychosexual support should go beyond physical sexual functioning and instrumental care and should consider couple-oriented education and interventions that help partners provide extra resources, sexual distress, relationship satisfaction, and partner perspective/posttraumatic symptoms in addition to simply providing practical information about sexuality after cervical cancer in a culturally competent manner. In order to remedy this need for more education, clinics and healthcare providers who provide medical and/or psychosocial support to cancer survivors should offer educational services or refer patients to the appropriate marriage/couples counselor. In addition, half of the participants in this study were either divorced, separated, or widowed, which raises concerns about the effect of marital status change on QoL (Khalil et al., 2015).

Many of the participants brought up the desire to seek support services such as psychotherapy or counseling and support groups but were unable due to limited funds or lack of time due to having to continue working to pay the bills. With half of the participants earning an annual income of less than $10,000 and about three quarters earning less than $25,000, financial hardship was a common theme throughout the interviews and posed a barrier to receiving adequate treatment. Because most of the participants also did not have health insurance at all or had a health insurance plan that did not cover their needs, many of them were forced to pay for everything out of pocket or seek limited government assistance for low-income individuals. This lack of health insurance was an added barrier that has not been explored in other studies with fully insured cervical cancer survivors (Khalil et al., 2015; Mujahadatuljannah, 2019). These results and other studies (Goding Sauer et al., 2020; Khalil et al., 2015; Shinan-Altman et al., 2022; Sun et al., 2021; Vermeer et al., 2016) reveal the importance of providing low-cost access to wraparound services as well as facilitating access to more extensive health insurance coverage, whether through employment benefits or government provision, not only for cervical cancer patients but for HPV screening as well (Johnson et al., 2020).

Research studies have also found that for women, educational determinants, including highest level of education completed and English language, are significantly associated with HPV vaccination (Garg et al., 2020; Thompson et al., 2018). Women most likely to have previous knowledge of HPV were those with a college degree (Hernandez et al., 2018). For many of the women in this study, having completed little formal education and particularly not speaking English provided barriers to proper prevention and care. Half of the participants had only completed a high school degree or less, and many of them struggled to access healthcare in clinics and hospitals that lacked linguistically competent healthcare professionals, translation services, and print material in Spanish.

Some participants found the cultural stigma regarding HPV and reproductive health to be a barrier as well. They expressed having felt guilt and self-blame for their situation and not having taken care of themselves as well as being afraid to talk about it (Millet, Moss, et al., 2022; Sun et al., 2021). The women discussed the misconceptions they previously and currently had about HPV and cervical cancer and stressed the importance of raising awareness instead of perpetuating misinformation. They urged young people and their parents, especially within Hispanic culture, to break the taboo surrounding sexual topics and encouraged them to prioritize their health above everything else. Many studies have explored cultures in which sexuality is considered a taboo topic that is too intimate or intimidating to broach, which hampered some participants from seeking help or taking care of themselves (Khalil et al., 2015; Shinan-Altman et al., 2022; Sun et al., 2021; Vermeer et al., 2016). Overall, it is necessary to take a social determinants of health approach in HPV-related disease and cancer prevention in order to achieve equity and eliminate disparities (Hernandez et al., 2018), especially for high-risk populations like Hispanic women living on the US-Mexico border and other ethnic/racial minorities.

Despite the challenges these women faced and the obstacles they had to overcome during and long after their treatment, they also demonstrated an incredible resilience and a concept that has been defined as post-traumatic growth (Millet, Moss, et al., 2022; Zhou et al., 2021). Research has characterized posttraumatic growth in survivors of gynecological cancers as a renewed appreciation for life, personal strength and empowerment, transformative cognitive shift, and spiritual change (Levkovich et al., 2022; Millet, Moss, et al., 2022). For example, spiritual well-being and keeping faith in God were found to be an important aspect of self-care for the women who participated in this study. Spirituality has been shown to contribute significantly to QoL (Garssen et al., 2015; Khalil et al., 2015). Most of the participants in our study were college-educated, which has also been shown to contribute significantly to QoL (Lopes et al., 2020; Mujahadatuljannah, 2019; Reese et al., 2017; Sun et al., 2021). All of the women were mothers and expressed that they gathered strength to fight their cancer for their children, who were incredibly important to them. Shinan-Altman et al. (2022), Huang et al. (2020) and Sun et al. (2021) also described that for many cervical cancer survivors, their children are their main source of hope. The participants in this study expressed a desire to stay busy and get back to a normal routine (or establish a new normal) as part of their self-care, which was a common theme in other studies (Millet, Moss, et al., 2022; Shinan-Altman et al., 2022). Participants also practiced self-care by developing an exercise routine and healthy diet, which is associated with positive physical and psychological health outcomes for cancer survivors and can result in improvements in fatigue and sexual functioning (Kaushik et al., 2021; Millet, McDermott, et al., 2022). Sun et al. (2021) reports that protective factors and benefit-finding experiences such as these (spirituality, finding strength, optimism, and hope through adversity, keeping active, etc.) can help to ameliorate endocrine and immune system function and overall QoL.

The interviewees agreed with research suggestions that health messages from people who have lived with cancer experiences are an important factor in improving knowledge about Pap and HPV tests and overall cancer prevention and recovery (Johnson et al., 2020; Millet, Moss, et al., 2022; Sun et al., 2021; Wiyeh et al., 2019). They believe that experiences can serve and teach others by using them as an example of the fact that cervical cancer can be both prevented and survived. Several of the women hoped that other people would see messages from people with lived experience and believe that it can happen to them too, because it happened to someone like them. For example, one participant mentioned the importance of showing members of the LGBTQ+ community that condom use is important for them too because it prevents STIs and not just pregnancy. Although it was “too late” for the interviewees to prevent cervical cancer for themselves, they believed it important for them to inform others on how to avoid their mistakes.

In summary, Hispanic cervical cancer survivors report a number of prevention and treatment needs that could be met by healthcare policy and practice changes. Healthcare professionals should discuss the advantages and disadvantages of all treatment options and allow the patient to exercise self-determination by choosing treatment for themselves. They can also deliver cancer diagnoses with more empathy and advice, as well as provide supportive care and couples therapy both during and after treatment. More low-cost access to wraparound services or health insurance coverage is needed for low-income Hispanic women. Hospitals and clinics can provide more culturally competent care by hiring staff members who speak Spanish and/or provide translation services and print material in Spanish. Overall, it is necessary to take a social determinants of health approach to make macro-level changes and prevent further cases of high-risk HPV and cervical.

Study Limitations

Participants’ responses are always influenced by the questions that are asked and the way those questions are worded, as well as by social conventions and expectations of approval or disapproval, because it is impossible to ensure complete anonymity. In addition, some meanings may have been lost or misinterpreted in translation. As such, the thoughts and ideas of participants in this study should be regarded as “subjective to change according to circumstance” (Alshenqeeti, 2014). The potential for subconscious bias and inconsistencies on the part of the interviewers and investigators also exists, particularly because transcripts were not returned to participants for review. In addition, because this study was conducted on a small scale (N = 10) and using a qualitative interview design, the results are subjective. They hold little external validity and cannot be generalized to all Hispanic women with a lived experience of cervical cancer, or even all Hispanic woman cervical cancer survivors in the US-Mexico border region. Lastly, because the participants were recruited in a nonrandom manner, our sample is potentially biased in a way that favors those who were simply more available or motivated. Future social science researchers could also use observation to augment the results of interviews by gaining the ability to compare participants’ external behavior with their internal beliefs.

Conclusion

Hispanic cervical cancer survivors are a diverse population and have unique experiences and needs during and post-treatment, contributing to their overall quality of life (QoL). Overall, Hispanic women with a lived experience of cervical cancer could benefit from alternative treatment options and management of adverse effects; empathetic, sensitive, and culturally competent medical professionals; social support; wraparound services including psychological and psychosexual education and counseling; financial assistance; and HPV awareness and prevention that focuses on breaking the cultural taboos surrounding sexual and reproductive health. The women interviewed for this study displayed strength, resilience, and posttraumatic growth in their adverse experiences with cervical cancer and provided an example for other Hispanic women and cancer survivors.