Abstract
Background
Cancer is a leading cause of morbidity and morality among Hispanics, the fastest growing population group in South Carolina (SC). The Partnership for Cancer Prevention (PCP) was established to build partnerships and community capacity to address cervical cancer early detection and control among the growing Latina population in SC. In this paper we report on the initial PCP community-based participatory research (CBPR) project.
Methods
PCP members engaged in a multi-method, participatory research project to assess cervical cancer related resources and needs among Latinas and healthcare providers. To explore attitudes and behaviors related to women's health in general and more specifically, female cancer, PCP members conducted 8 focus group sessions with 38 Spanish-speaking women. To assess the availability and perceived importance of culturally and linguistically appropriate services, PCP members conducted a survey of providers (n=46) and support personnel (n=30) at 14 clinical sites that provide cancer screening services.
Results
Health care access issues were Latinas' main concerns. For information and assistance in accessing and navigating the health care system, they relied on informal social networks and community outreach workers. Latina participants voiced misunderstandings about cancer risk and most appeared to lack a prevention orientation. Practitioners’ concerns included the assessment and documentation of patients' language preference and ability, provision of language assistance for limited-English-proficient (LEP) patients, and bilingual staff.
Conclusions
Building on the findings of this participatory research initiative, PCP members identified the following action strategies to promote cervical cancer screening among Latinas in SC: culturally appropriate cervical cancer awareness messages and outreach strategies geared towards increasing participation in cervical cancer screening and follow-up; maintenance of active community partnerships for health promotion, cancer risk reduction, and improved access to care; and increasing the capacity of the health care systems in SC to address Hispanic health concerns.
Keywords: Latino, cervical cancer, cultural competency
Introduction and Background
Cancer is a leading cause of morbidity and mortality among US Hispanicsi. [1] At both the national and regional levels, Hispanic women experience higher incidence of cervical cancer compared to Blacks and non-Hispanic whites.[1, 2] In 2005, the age adjusted invasive cervical cancer incidence rates for Hispanics in the South Atlantic US was 11.5 per 100,000 compared to 10.0 per 100,000 for Blacks and 8.1 per 100,000 for non-Hispanic whites.[2] The death rate from cervical cancer is 50% higher among Hispanic women than among non-Hispanic white women.[1] Underutilization of screening services and poor adherence to diagnostic follow-up are believed to contribute to the increased mortality among Hispanic women.[3] In addition, the majority of South Carolina ‘s Latinos are Mexican immigrants (62%),[4] a sub-population with a high prevalence of human papilloma virus (HPV) infections associated with an increased risk of cervical cancer.[5] Most of the current population data on cervical cancer among US Latinos is reflective of the populations in large metropolitan areas and border areas with historically high concentrations of Hispanics. However, the higher rates of cervical cancer in the South Atlantic region may be predictive of expected rates in South Carolina [6–8], where access to health care among burgeoning Hispanic communities of primarily recent immigrants is compounded by the very limited number of Spanish-speaking health professionals in the region.
The Hispanic population is the largest and fastest-growing minority group in the South Carolina (SC) and the nation.[9] Beginning in the 1990s, the rapid expansion of Hispanic immigration to six states in the Southeast (Arkansas, Alabama, Georgia, North Carolina, South Carolina, and Tennessee) greatly exceeded national rates. Between 1990 and 2005, in average increase in the Hispanic population in these states was 447%, compared to the national average of 85%.[10] During this period, the SC Hispanic population grew 342%. This growth was comprised primarily of new immigrants from Mexico and Central America with limited-English-proficiency (LEP), low levels of formal education in their country of origin, and very little knowledge of the US healthcare system.[11–13] In SC, this rapid influx of Hispanics posed significant challenges within the health sector, particularly given the limited data, resources, and capacity to provide culturally and linguistically appropriate services.
In response, over the past decade several collaborative initiatives developed to address issues of access to health care in general, and more specifically the provision of cervical cancer prevention and control services among SC Latinas. In this paper we provide a brief history and background of the Partnership for Cancer Prevention (PCP); describe the community-based participatory research (CBPR) approach we adopted and implemented; present the findings; and discuss the implications for healthcare providers, public health practitioners, and policy-makers in SC and other states facing similar challenges in addressing cervical cancer among Latinas.
History and Context
By 2000, the increasing awareness of the magnitude of the recent influx of Hispanics in SC was confirmed through census data.[14] At the urging of community leaders, the Governor charged the SC Commission for Minority Affairs (CMA) to facilitate discussions with the local Latino community to identify ways to better meet the needs of this growing population. The CMA established a Hispanic/Latino Ad Hoc Committee with the charge of identifying barriers to service delivery among LEP Hispanics in five key areas: 1) Education, 2) Health, 3) Public Safety, 4) Human Rights, and 5) Immigration, Transportation, and Fraud.[15] The Health subcommittee activities involved the mobilization of over 50 individuals from state-wide health care agencies and community-based organizations. The group engaged in discussions and participatory processes over a six-month period, with the aim of identifying and prioritizing the current SC Hispanic health issues, problems and concerns. The group identified five top priority issues: language and communication barriers; lack of cultural competency on the part of both providers and those seeking services; access to care barriers (e.g., cost, insurance, transportation); lack of data for health planning and surveillance; and immigration and social issues (e.g., lack of documentation; discrimination).[15] In the resulting report to the Governor, the Health subcommittee noted that these priority issues cut across the wide range of potential health and illness concerns among the SC Latino population, such as diabetes, hypertension, cancer, heart disease, prenatal care, occupational health and communicable diseases.[15] There was clear consensus that these overarching systemic issues must be addressed in order to ensure the provision of culturally and linguistically appropriate, quality healthcare.
After completing the Hispanic Health component of the CMA report to the Governor, participants remained motivated and empowered to maintain the momentum generated from the assessment of Hispanic health needs and resources, priority-setting, and formulation of policy recommendations, and decided not to disband, but to regroup and form a permanent entity. The result was the formation of the South Carolina Hispanic/Latino Health Coalition (heretofore referred to as the Coalition), with the express mission of advocating for access to quality healthcare for Latinos. In 2002, the Coalition became the first federally-recognized non-profit 501c3 organization in the state to focus exclusively on Hispanic health issues. Coalition membership was open to agencies, community organizations, and individual health and social service professionals and community volunteers who shared a common interest in improving the health of Hispanics in SC through collaboration and partnerships.
Implementing a Community Based Participatory Research Initiative
With the establishment of the Coalition, the groundwork was laid for the first formal community partnership initiative to address Hispanic health issues. The SC Breast and Cervical Cancer Early Detection Program/Best Chance Network (BCN), a Coalition member, had identified the need to increase the involvement of uninsured age- and income-eligible Latinas in their free breast and cervical cancer screening program. To this end, BCN invited other Coalition members to participate in the strategic planning process for renewal of a grant from the Centers for Disease Control and Prevention. A new BCN priority was to increase the percentage of women screened who had not received a Pap smear in 5 or more years.
Concurrently, Redes en Acción: National Hispanic/Latino Cancer Research Network, funded through the National Cancer Institute, issued a call for proposals focusing on Hispanic cancer-related issues. The initiative was driven by the national focus on the elimination of racial/ethnic health disparities and concomitant acknowledgement by leading behavioral and social scientists that successful interventions involve communities as partners in the design, implementation, and evaluation of interventions.[16] The Coalition's mission was to improve access to quality health care for Hispanics; BCN had programs and services that it wanted to make available to Latinas and University of South Carolina (USC) researchers were interested in developing effective and sustainable interventions to eliminate health disparities. The confluence of these various initiatives set the stage for the development of the Partnership for Cancer Prevention (PCP), a collaborative CBPR proposal involving the Coalition, BCN, and USC, funded through a Redes en Acción grant.[17]
CBPR is an action-oriented approach to the conduct of research[18] in which community representation is based on both structural (e.g. geographic, physical, organizational) and functional (e.g. social groups based on language, race, ethnicity, faith) communities of interest [19] In CBPR, community participation has direct influence on the development, planning and implementation of the research.[20] Effective CBPR initiatives are characterized by engagement of members of the various communities of interest in the research processes, that include identifying and prioritizing the research questions, having ownership of the information gathered, disseminating the results to their own constituencies, and continuing to benefit from the research experience after the funding period ends.[21] Potential benefits to both researchers and communities of interest include increased effectiveness through engagement of community wisdom in planning and implementing research; enhanced community trust; and improved sustainability through the transfer of skills and resources to community individuals and institutions.[22–24] Rather than entering the community with a predefined research agenda and timeline, the role of the academic researcher in CBPR is to be a willing research partner, open to building long-term relationships based on mutual trust and respect [22].
In the case of the PCP, we had initiated steps to building trust and relationships through our collective engagement in developing and sustaining the newly formed Coalition, a response to community and stakeholder-identified needs and priorities. The inclusive and participatory nature of the project, which included members of the SC Latino community, health care providers, public health professionals, Latino outreach workers, and academic researchers, was in line with CBPR principles. Through the Coalition, the PCP brought together local representatives from the American Cancer Society, Cancer Information Service, Clemson University, Hispanic Assistance and Bilingual Access Project (HABLA), Palmetto Health-Cancer Health Initiative, Palmetto Health District, SC Department of Health and Environmental Control, SC Hispanic Outreach, and USC. We made a deliberate effort to share roles and responsibilities throughout the project, working together to ensure optimal and comfortable levels of involvement of all participants in the research process. To this end, we involved community and organizational partners in the assessment activities, elaboration of research instruments (e.g. focus group discussion guides; surveys), translation of forms and protocols, recruitment of study participants, data collection and interpretation, and dissemination of the findings. The academic partners took the responsibility for project coordination and administrative support, technical assistance on research design and instrument development, oversight of data management and analysis, and reporting to the funders.
The PCP research activities reported in this paper occurred between October 2001 and March 2003. During this period, the PCP met regularly at different community locations. In the preliminary phases, group activities focused on getting to know each other, exploring existing resources, and identifying ways services and programs intersected, overlapped, or diverged. As our collective trust and familiarity increased, we engaged in brainstorming about the issue of Latinas' access to cervical cancer screening and control services, shared data and experiences, and identified additional partners whom we invited to join the PCP. One exercise involved envisioning the paths Latinas might take to access local cancer prevention services. These participatory exercises helped us identify our own knowledge gaps related to availability of existing resources and increased our awareness of the need to better understand the practices and experiences of the majority of Latinas in SC, primarily newly arrived, LEP immigrants.
Our next step was the collective identification of the two-fold aims of the PCP research: to further our understanding of Latina’s attitudes and behaviors around cervical cancer prevention and early detection; and to determine the extent to which local cervical cancer prevention programs were able to provide culturally and linguistically appropriate services. The dual focus of the project required different data collection methods (i.e., focus groups and surveys) with very different populations (i.e., community-dwelling Latina immigrants and healthcare providers and support personnel).The USC Institutional Review Board approved all research protocols prior to the initiation of data collection. In the following sections we describe the research design, implementation, and findings from both parts of the PCP research initiative.
Exploring Latinas' Attitudes and Behaviors: Design and Methods
To answer our questions about Latinas' attitudes and behaviors around cervical cancer prevention and detection, we conducted focus groups in two different regions of the state (Midlands and Upstate). PCP members from our community of interest (e.g. Latina community organizers and representatives from Hispanic Outreach) were integral to the success of the planning and implementation of the focus groups. These Latina PCP members were responsible for identifying and recruiting participants, identifying a suitable community location, arranging transportation for participants, providing assistance before and during the focus group sessions, and participating in the analysis of the resulting qualitative data. Because this was an exploratory study, inclusion criteria were quite broad (e.g. Spanish-speaking, women 18 years or older that self-identify as Hispanic or Latino).
In both the Midlands and Upstate we recruited participants for two groups (N=4), and held two focus group sessions with each group, for a total of 8 focus group sessions. The decision to conduct two sessions with each group was a response to concerns raised by PCP members, who recognized the cultural inappropriateness of addressing potentially sensitive issues with Latinas with whom we had not developed a level of rapport and trust. Therefore, in the first session we began by exploring the broader issues of health care access; knowledge of health care services; barriers to services; and awareness of cancer and perceptions about personal risks for cancer. In the second session (usually a week later), we addressed more sensitive issues including cervical cancer, family planning, prevention of sexually transmitted diseases, and communication about women's health issues with a partner or spouse.
When participants arrived at the site, PCP members greeted them, provided refreshments, and assisted in completing informed consent and demographic forms. Trained bilingual PCP members facilitated the audio-taped focus groups in Spanish and also served as note-takers. Each focus group lasted approximately 2 hours. At the conclusion of the first session, participants were compensated with a $10 gift-card and the conclusion of the second session participants received a $15 gift card and Spanish educational material on breast and cervical cancer. Bilingual professionals from a PCP member organization transcribed the tapes in Spanish. PCP member organizations that provided research support for recruitment and transcription received compensation from grant funds.
We invited PCP members who were fluent in Spanish to participate in the qualitative analysis of the transcript data, a process facilitated by one of the academic partners, an experienced qualitative researcher. A few participants had some prior experience in qualitative methods, but others had none. Each member of the analysis team read the transcripts individually, looking for salient themes, particularly in relation to the women’s knowledge of cervical cancer, cultural myths and beliefs in regards to cancer risks, personal experiences and perceptions of screening and treatment; and awareness of personal cervical cancer risks. We then met collectively to compare our individual findings and identify those salient themes for which there was mutual consensus.
Exploring Latinas' Attitudes and Behaviors: Findings
The sample consisted of 38 Latina residents, with a mean age of 31.85±12.31 years. The majority were married (73%), born outside the US (93%) mostly in Mexico, had less than a high school education (61%) and had total family incomes below $1,100 per month (68%). Over half of the women (58.6%) had received a Pap smear in the last year; 33% of the participants received a Pap smear more than one year ago, and 8% had never received a Pap smear.
Very few of the women had any ideas regarding cervical cancer etiology or treatment. These women also echoed attitudes noted in other research such as fatalistic beliefs about cancer (“If they tell me I have it, I’ll die”). They demonstrated very little knowledge about cancer risks, identifying tubal ligation, oral contraceptives, and untreated vaginal infections as potential cervical cancer risks. Other identified causes of cancer included environmental contaminants (electric magnetic fields, sun exposure, nuclear waste), heredity and cigarettes. Most participants had some degree of familiarity with the Pap test procedure, but there was no evidence that they fully understood the purpose of the test. Women reported initiating cervical cancer screening upon marriage; most concurred screening should be repeated every 6 months to 1 year. The main reasons for having a pap test was “peace of mind” and caring for oneself for the sake of the family. Barriers to cervical cancer screening included fear of the “unknown,” “unsterilized instruments” “HIV,” “pain” and embarrassment of being “seen or touched down there.” Inability to choose, communicate with, or relate to their health care providers (“you get who you get”) contributed to stress, anxiety, and decreased utilization of cervical cancer screening services.
The most common reason for seeking formal health care among these women was for prenatal health care services. Many women had only had a Pap test because they had become pregnant; most reported not actively seeking family planning services or other preventive reproductive health care services prior to marriage or pregnancy. Not surprisingly, these Latinas did not understand the US health care system, with its eligibility and insurance criteria and different types of providers and settings. Other than prenatal care, preventive care was not a priority health care need among these women. If they sought care it was for acute illnesses or emergencies. In addition to language and communication barriers, significant barriers to health care included costs, lack of child care or transportation, and no source of primary care.
A commonly voiced expectation was the identification of family members (e.g. mothers, specifically, but also sisters, grandmothers, aunts, and others) as individuals these Latinas trusted, confided in, and from whom they sought advice and health information. Although participants reported having consulted their mothers and other family members regarding many issues, there were certain health issues, such as sexuality, family planning, and life-threatening illness (e.g., cancer) that were rarely addressed within these intimate family and social networks. These Latinas cited “doctors” as a good source of information for advice regarding cancer. However, they seldom went to the doctor, and if and when they did, did not actively ask questions or request information or referrals for preventive services. Shame, embarrassment, language barriers, and fear of “bad news” all contributed to this behavior. Although they indicated doctors would be a good source of advice, they preferred bilingual/bicultural outreach workers with whom they could communicate better and on the same level. These were primarily bilingual/bicultural program staff with strong community ties and established relationships with “gatekeepers” within the formal health system. However, the most common source of health information was lay contacts such as friends, family, neighbors, or trusted sources (e.g. church, work-site). These informal contacts provided assistance in making phone calls, scheduling appointments, providing transportation and informal interpreter services.
Access to Cultural and Linguistically Appropriate Services: Design and Methods
Our second research aim was to assess the cultural and linguistic appropriateness of the existing services providing cervical cancer screening to Latinas, and the level of knowledge and experiences of health practitioners and support personnel in contact with Latina clients through these cancer screening services. To this end, we developed two surveys, one for practitioners and the other for support personnel. To facilitate this process, PCP academic researchers created a compendium of cultural competency assessments, based primarily on the work of Goode[25] and Tirado [26] which was shared with other members. Collectively, we then identified and selected items for each survey. We designed the practitioner survey for those who provide direct patient services (e.g., nurses, physicians, social workers, health educators, and nutritionists) and the support personnel survey for administrative and clinical support staff (e.g. nursing and medical assistants, receptionists, clerical staff).
PCP members representing the state health department, BCN and a community cancer screening program volunteered to conduct the survey in their clinical sites and recruited 14 breast and cervical cancer screening providers in Fairfield, Lexington, Newberry, and Richland counties to participate. Each organizational member was responsible for obtaining approval for and coordinating data collection for their respective provider sites. To facilitate data collection and minimize breach of confidentiality, the surveys were anonymous, but color coded by site. Respondents who completed and returned the anonymous surveys were assumed to consent to participation in the research. PCP representatives from each of the participating sites took responsibility for oversight of the research process. This included providing clinic staff with a brief description of the PCP research project, explanation of the voluntary nature of participation in the survey, and instructions for completing the paper and pencil survey, placing it in a sealed envelope, and returning it to a designated location. At each site, a PCP representative gathered the surveys and forwarded them to project staff. Each site that participated in the survey received Spanish language educational materials on breast and cervical cancer and cultural competency resources provided by the Cancer Information Service, a PCP member.
Survey respondents were asked to assess availability and importance of language services and resources, perceptions of Latina clients’ service needs, Latina client profile, and respondent characteristics. Respondents were presented with a list of services and resources, including: eight items on bilingual staffing (e.g., nurses, doctors, health educators, social workers, nutritionists, administrators, receptionists and clerical staff), six items on Spanish language resources (i.e., interpreters, clinic forms, signs & notices, educational materials, 24 hour hotline, printed material) and three items on documentation of language preference, English language proficiency and literacy level on clinic records. For each service/resource listed respondents reported how often it was provided at their clinic, from 1 = never to 5 = always, and how important they thought it was, from 1=Unimportant to 5=Very Important. Seven open-ended items asked respondents about their perception of the health and social problems facing Latinas, why Latinas come to their clinic, changes they thought were needed at the to improve care and cultural competency for Latinas at the personal and organizational level. Respondents provided information on the number of Latina clients served per month, percent female, age, and immigrant status. Respondents provided personal demographic information on gender, race, education, Spanish language capacity and past participation in cultural competency training.
All data received from participating sites were entered, managed and analyzed using the Statistical Package for the Social Sciences (SPSS), Version 16 (Chicago, Ill). Means and standard deviations were calculated and simple descriptive and univariate statistics were first examined followed by bi-variate analyses to assess differences between providers and staff on key variables of interest. Levene’s two-tailed t-test for unequal variances was used to account for the heterogeneous variances observed in the sample. [27] Cronbach’s alpha coefficients for Likert-type scales were calculated. Scores ranged from 0.713 to 0.963 indicating very good reliability.
Access to Cultural and Linguistically Appropriate Services: Findings
We distributed 152 surveys to 4 county health departments, 1 community cancer screening program for the indigent and 9 private family practice providers with current BCN contracts with the SC Department of Health and Environmental Control. We received 76 completed surveys (50% response rate), 60% were completed by practitioners and the remaining 40% were completed by support personnel (Table 2). The majority (78.3%) of practitioner respondents were nurses. The sample was composed of participants from county health departments (47%), private providers linked to BCN (42%) and a community health center (11%). Respondents were primarily female (96%) and Caucasian (78%). The low level of linguistic competency of the sample was indicated by the fact that 70% reported being uncomfortable communicating with Latina clients in Spanish.
Table 2.
Characterisitcs of Survey Respondents
| Characteristic | Percent (%) |
|---|---|
| Provider Type | |
| Clinical Service Provider | 60.0 |
| Medical Doctor (8.7%) | |
| Nurse (78.3%) | |
| Social Worker (6.5%) | |
| Health Educator (2.2%) | |
| Other (4.3%) | |
| Administrative & Support Staff | 40.0 |
| Setting | |
| Best Chance Network Sites | 42.0 |
| County Health Departments | 47.0 |
| Community Health Centers | 11.0 |
| Gender (% Female) | 96.0 |
| Race | |
| White | 78.1 |
| Black | 23.3 |
| Other | 1.4 |
| Education | |
| High School Diploma | 8.5 |
| Associates Degree | 26.8 |
| Bachelors Degree | 29.6 |
| Graduate/Professional Degree | 35.2 |
| Language | |
| Speak Spanish | 32.4 |
| Write Spanish | 18.3 |
| Read Spanish | 23.9 |
| Comfort w/ Spanish communication | |
| Very Comfortable | 2.9 |
| Comfortable | 15.7 |
| Somewhat Comfortable | 11.4 |
| Somewhat Uncomfortable | 30.0 |
| Very Uncomfortable | 40.0 |
| Training on Serving Latinos | |
| Never | 47.9 |
| Yes, more than 1 year ago | 18.7 |
| Yes, in the past year | 33.4 |
Table 3 presents provider and staff reports on the availability of language resources and services at their clinics and their perceived importance of these resource and services. There were no significant differences between providers and staff on their perception of the availability of language resources and services. Both providers and staff perceive that language support services were provided most often followed by documentation of language and literacy. Respondents reported that bilingual staff was mostly “not at all” available. With respect to the value or importance of language resources and services, providers rated language support services as significantly more important than staff (t=−2.72, d.f.=37, p<.05). The primary concern of providers and staff was addressing the language needs of Hispanic clients, including a need for Spanish educational materials, forms and signage, and access to on-site interpreters (Table 4). Although there was a general concern about the availability of language assistance services, there was less recognition of other aspects of cultural competency. In general, responses suggested a lack of awareness about the local Hispanic community. For example, nearly 50% of the respondents were not able to answer questions regarding the country of origin or immigration status of the local Hispanic community or of the Hispanic clients at their agencies; 47.9% reported not having received any formal training specifically focused on serving Latina clients. The majority (55%) reported having daily or weekly contact with Hispanic clients. However, less than 25% were “often” or “always” satisfied with their ability to provide culturally and linguistically appropriate services. The most common reasons attributed to clinic attendance by Hispanic clients were related to cost; 35% (n=24) identified “sliding fees for payment” or “free medical care” as the reason that Latinas came to their clinics. The most pressing health problems among Hispanic clients were reproductive health issues including pregnancy (22%) and sexually transmitted infections (18%); obesity was also commonly reported (20%). With regard to social issues, language barriers (68%), financial concerns such as “poverty,” cost of healthcare services, being uninsured (41%) and transportation (30%) were most common.
Table 3.
Comparison of provider perceptions of importance and availability of language resources and services
| How Often Provideda | How Importantb | |||
|---|---|---|---|---|
| Providers (N=46) | Staff (N=28) | Providers (N=46) | Staff (N=28) | |
|
|
||||
| Resources and Services | ||||
| Bilingual Staff | 1.66 ± 0.49 | 1.66 ± 0.88 | 3.84 ± 0.67 | 3.69 ± 1.08 |
| Document Language & Literacy | 2.38 ± 0.98 | 2.32 ± 1.24 | 4.10 ± 0.56 | 3.85 ± 1.05 |
| Language Support Services | 3.18 ± 0.80 | 3.06 ± 1.10 | 4.35 ± 0.47 | 3.90 ± 1.03* |
1=Not at all, 2=Seldom, 3=Usually, 4=Often, 5=Always
1=Unimportant, 2=Probabably Not Important, 3=Undecided, 4=Important, 5=Very Important
t=−2.72, d.f.= 37, p<.05 Levene's t Statistic for Equality of Means Separate Variance formula
Table 4.
Provider perceptions of Latina health issues
| Reasons Latinas attend clinic (n = 68) | Percent (%)a | Social issues faced by Latinas (n=37) | Percent (%)a |
|---|---|---|---|
| Cost | 35 | Language Barriers | 68 |
| WIC services | 26 | Financial issues, poverty or lack insurance | 41 |
| Bilingual staff or on-site translators | 24 | Tansportation | 30 |
| Convenience (location and hours) | 22 | ||
| Pregnancy tests and prenatal care | 19 | ||
| Family planning services | 16 | ||
| Referrals from friends and family | 13 |
| Health problems among Latinas (n=49) | Percent (%)a | Clinic needs to improve care (n=50) | Percent (%)a |
|---|---|---|---|
| Obesity | 20 | On-site interpreters | 33 |
| Sexually Transmitted Infections | 18 | Spanish classess for staff | 27 |
| Birth Control | 16 | Signs & educational materials in Spanish | 17 |
| Diabetes | 16 | English classes for Latino clients | 11 |
| Tuberculosis | 14 | ||
| Inadequate or no regular medical care | 12 | ||
| Poor diet | 10 | ||
| No prenatal care | 10 | ||
| Hypertension | 10 |
responses listed were identified by at least 10% of respondents
Translating Research Evidence to Practice
After completing the data analyses for both the qualitative and quantitative components of the research, we held a day-long PCP meeting to discuss the results and identify and prioritize strategies for future actions. As a result of this process, we were more acutely aware of Latinas’ misinformation about cancer etiology, lack of a prevention orientation, and their distrust of lack of understanding of the U.S. healthcare system. This knowledge helped us understand more fully the barriers to care that Latinas encounter. Our findings indicated practitioners’ main concerns revolved around language access; other aspects of culturally appropriate care, such as identification and documentation of language preference or ability, and bilingual staffing, were considered less important. To address Latinas' cervical cancer knowledge gaps and mistrust and misunderstanding of the U.S. health care system, we recommended the development and dissemination of linguistically and culturally appropriate information about availability, accessibility, costs, and benefits of cancer screening services to Latinas through the use of lay informants. At the organizational level, our primary recommendations for action included the provision of trained interpreters or Spanish-speaking staff and cultural education and training for providers and staff aimed at improving relationships and trust with Latina patients.
Following the completion of this CBPR project in 2003 individual PCP member organizations have continued to translate the evidence and recommendations into educational, programmatic, organizational and research initiatives. Specifically, the Coalition developed and disseminated a cultural competency training program for health and social service providers throughout the state;[28] BCN committed resources to recruit, hire, and train bilingual Latina outreach workers and subsequently hired a full-time Latina BCN outreach worker for the Upstate region; community health centers and health departments made Spanish language forms and materials available at their clinics; and USC researchers conducted community-based intervention research aimed at improving Hispanic immigrants' ability to access and navigate the US healthcare system.[13, 29] PCP members continue to use their collective experience and findings from the assessments to inform program planning within their respective breast and cervical cancer control efforts. Most recently, in 2007–2009, the PCP leveraged its skills and resources to obtain funding through the Coalition, American Cancer Society, and the South Carolina Cancer Alliance to develop and implement the Iniciativa Latina contra el Cáncer (Latina Cancer Prevention and Early Detection Initiative), a coordinated, culturally-relevant community-engaged intervention involving media, outreach and education provided by trained lay Latina health educators, and enhanced provision of culturally and linguistically appropriate, quality cancer control services.
Over the past eight years, the PCP has remained committed to leveraging resources and addressing barriers to cervical cancer screening among this newly emerging population of Latinas in South Carolina. The partnership has resulted in recommendations for action and research to improve health care access. PCP members have also experienced the benefits of collaborative partnerships by recruiting culturally-appropriate personnel to enhance BCN’s program reach of vulnerable Latina women and improve their utilization of local cervical cancer screening services.
Table 1.
Characteristics of Focus Group participants (N=38)
| Characteristic | Percent (%) |
|---|---|
| Age in years (Mean ± SD) | 31.9 ± 12.3 |
| Marital Status | |
| Married, living with spouse or partner | 71.0 |
| Married, not living with spouse | 15.8 |
| Not married | 10.5 |
| Widowed | 2.6 |
| Place of Birth | |
| Mexico | 84.2 |
| United States | 7.9 |
| Other | 7.9 |
| Highest Degree Earned | |
| Elementary | 40.5 |
| Middle School | 18.9 |
| High School | 10.8 |
| Vocational Degree or Certificate | 16.2 |
| College/University | 13.5 |
| Country of Education | |
| Mexico | 77.8 |
| U.S. | 13.9 |
| Other | 8.3 |
| Employment | |
| Homemaker | 65.8 |
| Employed | 23.7 |
| Student | 5.3 |
| Unemployed | 5.3 |
| Monthly Household Income | |
| less that $700 per month | 47.2 |
| $700–$1,099 per month | 16.7 |
| $1,100–$1,499 per month | 22.2 |
| >= $1,500 per month | 13.9 |
| Adults living in household, (Mean±SD) | 3.03±1.32 |
| Children < 18 living in household, | 2.03±1.36 |
| Personal History of Cervical Cancer (% yes) | 2.6 |
| Last Pap Test | |
| < 1 year | 55.3 |
| ≥ 1 year and < 2 years | 31.6 |
| ≥ 2 years | 5.3 |
| Never | 7.9 |
Acknowledgments
This publication/presentation was made possible by Redes En Acción, Grant Number 5 U01 CA86117, from the National Cancer Institute under an agreement with The University of Texas Health Science Center at San Antonio. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the National Cancer Institute. We would like to thank Wendy Campbell, Barbara Charles, Betsy Levitas, Orlando Gonzalez, Donna Rhodes, Bessie Smith, Blanca Traywick, Alan Waln and other members of the PCP for their contributions and commitment to the project.
Abbreviations
- PCP
Partnership for Cancer Prevention
- BCN
Best Chance Network
- SC
South Carolina
- LEP
limited English proficiency
- CBPR
community-based participatory research
- CMA
Commission for Minority Affairs
Footnotes
The literature on Latino health has no consensus regarding the preferred term to use referring to persons of Latin American heritage in the U.S. Although government documents, including the census, use the term Hispanic, both terms are used in the literature. Given this mixed usage in the literature, we used Hispanic primarily to refer to the broader population group and Latina to refer to the Spanish-speaking women involved in the study.
Financial Disclosure: No financial disclosures.
Contributor Information
Deborah Parra-Medina, Email: parramedina@uthscsa.edu, Institute for Health Promotion Research, University of Texas Health Sciences Center San Antonio, 8207 Callaghan Road, Suite 353, San Antonio, TX 78230, Phone: (210)562-6521, Fax: (210)348-0554 (fax).
DeAnne K. Hilfinger Messias, Email: deanne.messias@sc.edu, College of Nursing and Women’s and Gender Studies Program, University of South Carolina, Columbia, SC 29208, Phone: (803)777-4009, Fax: (803)777-9114.
Elizabeth Fore, Email: efore@sc.edu, Center for Health Services and Policy Research, University of South Carolina, 730 Devine Street, Columbia, SC 29208, Phone: 803-777-0379, Fax: 803-777-0380.
Rachel Mayo, Email: rmayo@clemson.edu, Department of Public Health Sciences, Clemson University, 519 Edwards Hall, Clemson, SC 29634-0745, Phone: 864-656-7435, Fax: 864-656-6227.
Denyse Petry, Email: denyse.petry@cancer.org, American Cancer Society, 128 Stonemark Lane, Columbia, SC 29210, Phone: (803) 750-1693, Fax: (803) 750-2400.
Irene Prabhu Das, Email: prabhudasi@mail.nih.gov, Division of Cancer Control & Population Sciences, National Cancer Institute, 6130 Executive Blvd. Room 4095B, Bethesda, MD 20892, Phone: (301) 451-5803, Fax: (301) 435-3710.
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