Addressing the Information Gap

Abstract

Despite significant advances in prevention, Mexican American women continue to experience disparities related to cervical cancer and access to current and relevant health information. To address this disparity a community–campus partnership initiated an outreach program to Latinas in Arizona as one part of an integrated approach. Promotoras (community health workers) provided the leadership in the development of a curriculum to (a) train promotoras on cervical cancer, (b) meet informational needs of community members, (c) address relevant social determinants of heath, and (d) promote access to health care. The purpose of this article is to describe the community-based participatory approach used in the development of the curriculum. Specifically, the article describes the leadership of promotoras, the curriculum development, and the use of continual feedback to inform the quality control. To address cervical cancer disparities for Mexican American women, the Pima County Cervical Cancer Prevention Partnership used principles of community-based participatory action.

Keywords

cervical cancer cancer prevention and control lay health advisors community health workers community intervention health disparities partnerships/coalitions community-based participatory research Latino minority health college–community partnerships university/college health cultural competence

A dramatic reduction in cervical cancer mortality in the United States has occurred over the past 50 years because of advances in screening, diagnostic, and treatment technologies, most recently, the development of human papillomavirus (HPV) vaccines. Introduction of the Pap test reduced mortality by 75% to 80% (Ries et al., 2005). Despite these advances, Latinas continue to experience cervical cancer disparities. Cervical cancer incidence and mortality rates in the United States are disproportionately high among Hispanics, who are more likely to present with advanced stage and poorer prognosis disease. Cervical cancer rates for Latinas in the United States are twice that of White non-Hispanic women. Latinas are 50% more likely to die from cervical cancer than White non-Hispanic women (American Cancer Society, 2011).

The significance of this disparity lies in the fact that cervical cancer is preventable and without an increase in awareness regarding cervical cancer prevention and access to services the disparity will widen. To address this disparity, a community–campus partnership initiated an outreach program to Latinas in Arizona as one part of an integrated approach. Promotoras (community health workers) provided the leadership in the development of a curriculum to (a) train promotoras on cervical cancer, (b) meet informational needs of community members, (c) address relevant social determinants of health, and (d) promote access to health care. The purpose of this article is to describe the community-based participatory approach (CBPA) used in the development of the curriculum. Specifically, we will describe the leadership of promotoras, the curriculum development, and the use of continual feedback to inform the quality control.

Pima County, Arizona, has a population of more than 1 million residents. Hispanics are the largest and fastest growing ethnic group in Pima County, comprising 33.7% of its total population (U.S. Census Bureau, 2010). The Pima County Cervical Cancer Prevention Partnership (PCCCPP) is a community–campus coalition led by promotoras, in collaboration with community and institutional partners. These partners include residents, community health centers, nonprofits, neighborhood associations, school districts, Southeast Arizona Area Health Education Center (SEAHEC), public libraries, elected and appointed officials, and the University of Arizona. The mission of the PCCCPP is to increase knowledge of cervical cancer prevention; facilitate access to screening, diagnostic, and treatment services; and inform systems and policy change as strategies to eliminate this disparity. The PCCCPP is funded through a cooperative agreement with the Centers for Disease Control and Prevention’s Racial and Ethnic Approaches to Community Health across the United States (REACH US).

Background/Literature Review

Cervical cancer disparities have been attributed in part to lack of access to accurate information that is culturally and linguistically appropriate and written at an adequate literacy level. Additionally, structural barriers, including lack of insurance, income, immigration status, discrimination, transportation, and other systemic barriers, limit access to health services. Recent developments in cervical cancer prevention technologies have the potential to significantly reduce cervical cancer morbidity. Excess Cervical Cancer Mortality, a report by the National Cancer Institute’s Center to Reduce Cancer Health Disparities, demonstrated how the Trans Health and Human Services recommendations on eliminating cancer disparities could be applied to cervical cancer. The specific recommendations most relevant to this article include the following: improve awareness and knowledge about cervical cancer through the development and provision of linguistically and culturally appropriate information; intensify outreach to women who have rarely or never had a Pap smear for cervical cancer; and establish and strengthen partnerships that promote a “whole woman” approach to care (Freeman & Wingrove, 2005; U.S. Department of Health and Human Services, 2004).

Promotora/community health worker led interventions have shown to be effective at increasing knowledge, self-efficacy, and access to services for vulnerable populations (Balcázar, Alvarado, Cantu, Pedregón, & Fulwood, 2009; Balcázar, Alvarado, Hollen, Gonzalez-Cruz, & Pedregón, 2005; Brownstein, Hirsch, Rosenthal, & Rush, 2011; Capitman, Pacheco, Ramírez, & Gonzalez, 2009; Larkey, 2006; O’Brien, Halbert, Bixby, Pimenter, & Shea, 2010). As community leaders, promotoras have an intimate understanding of gaps in information, barriers to services, cultural and linguistic backgrounds, and health literacy levels of women most affected. Promotoras are able to take existing, highly sophisticated health information, and integrate it into presentations that are culturally and linguistically relevant, and at an appropriate literacy level (Bird, Otero-Sabogal, Ha, & McPhee, 1996; Brownstein, Cheal, Ackermann, Bassford, & Outcalt, 1992; Satterfield, Burd, Valdez, Hosey, & Shield, 2002; Vanslyke et al., 2008). Limitations to the promotora model include the amount of initial and ongoing training combined with effective supervision and monitoring required. In addition, readily available, and sometimes questionable, information on the Internet may tempt promotoras to provide information beyond training content.

Much has been published on the development, implementation and efficacy of promotora programs and their central role in CBPA. This article builds on existing literature with a specific focus on cervical cancer. However, a good deal of the literature does not describe how promotoras were trained, the development process of the training curricula, or the role promotoras played. We address this gap in the literature, especially important to practitioners, by describing the community-based process followed in the development of the training curriculum and the role of promotoras in this process. This information is vital to investigators and practitioners wishing to initiate promotora programs (Jackson & Parks, 1997; Larkey, 2006; O’Brien, Squires, Bixby, & Larson, 2009; Rhodes, Foley, Zometa, & Bloom, 2007).

CBPA in public health is rooted in the work of Brazilian educator Paulo Freire and popularized by sociologist Orlando Fals-Borda. This approach employs community mobilization as a strategy to address health disparities to identify and address the socioeconomic forces responsible. CBPA creates change from within using community-based assets and increasing community capacity through skill development and access to resources (Baum, MacDougall, & Smith, 2006; Hennessey Lavery et al., 2005; Wynn, Taylor-Jones, Johnson, Bostick, & Fouad, 2011). A characteristic of CBPA, central to this article is the knowledge exchange and skill development. A reciprocal process in which skills are provided by the researchers to the community and the community provides leadership, experience, and information vital to the success of the intervention to health practitioners and researchers (Kim-Ju, Mark, Cohen, Garcia-Santiago, & Nguyen, 2008). In this article, we emphasize how the use of a process guided in CBPA can be used to develop an effective promotora-led cervical cancer education and outreach campaign.

Methods/Strategies/Intervention Applications

The development of the educational campaign employed three iterative steps: curriculum development, training and implementation, and feedback and revision (see Figure 1). Principles of CBPA (see Table 1; Schulz, Krieger, & Galea, 2002; Wynn et al., 2011) were employed throughout the process, including

Table 1

Use of Principles of Community-Based Participatory Action

CBPA Principles	Employed by PCCCPP
Recognizes community as unit of identity	SEAHEC, CBOs, libraries, CHCs, CHWs, community leaders, neighborhood associations part of partnership, identified geographic area, cervical cancer as priority health issue
Builds on strengths and resources within the community	Leveraged the skills and resources of existing collaborative efforts within the priority population, CHW network and CBOs, UA and SEAHEC content, evaluation, training expertise
Facilitates collaborative partnerships in all phases	CHWs provided leadership for all phases of curriculum development, implementation, evaluation, and training. Capacity building technical assistance/technical input was provided by CBOs, UA, and SEAHEC
Integrates knowledge and action for the mutual benefit of all partners	Information obtained through capacity building initiatives was used to improve outreach and education efforts, patient navigation and systems change initiatives at community and institutional levels
Promotes a co-learning and empowering process that attends to social inequalities	CHWs transfer knowledge and skills to their clients. CHW and community inputs were key to the curricula content and design. These ideas led to the development of an outreach effort that met needs of the community. Input and action from the community led to changes in CHC’s systems and policy to improve service delivery
Involves a cyclical and iterative process	The development and implementation of outreach and navigation initiatives entailed cyclical processes and built on constant input from community and CHWs. Feedback elicited from clients and promotoras was reviewed at monthly meetings, plans and materials were revised and updated based on this feedback
Address health from both positive and ecological perspectives	Interventions addressed the social determinants of health focused on barriers to information screening diagnosis and treatment as well as systemic issues
Disseminates findings and knowledge gained to all partners	Results of the evaluation and client feedback are presented on a regular basis at bimonthly partner meetings and annual retreats
Involves long-term commitment by all partners	Long history of collaboration and commitment to eliminate health disparities. PCCCPP efforts are integrated into local nonprofits and organizations through training, and systems changes, including CHW programs and cervical cancer care teams integrated into CHC’s capacity built by and within the promotoras will remain in community and will be applied to other disparities

SOURCE: Adapted from Wynn, Taylor-Jones, Johnson, Bostick, and Fouad (2011).

NOTE: CBPA = community-based participatory action; PCCCPP = Pima County Cervical Cancer Prevention Partnership; CHW = community health worker; CHC = community health center; UA = University of Arizona; SEAHEC = Southeast Arizona Area Health Education Center; CBO = community-based organization.

leadership/engagement of members of the priority community shared decision making,

building on community strengths,

collaborative partnerships,

co-learning,

cyclical iterative process,

addressing health from both positive and ecological perspectives,

disseminating findings, and

long-term commitment.

Stage 1: Curriculum Design

Three promotoras were selected to lead a curriculum design team based on recommendations from PCCCPP members and experience with the priority community. Additional members of the design team included health professionals who contributed content expertise, coalition members who contributed expertise on community needs and resources, and university and AHEC staff who contributed curriculum development and training expertise.

The promotoras vetted a state-of-the-art cervical cancer curriculum developed for medical professionals (Garcia & Shama, 2007) with the authors and the project director. Critical pieces of information from this curriculum were selected and missing content identified. The promotoras adapted the information for a lay audience and created a bilingual presentation that was checked for accuracy. This presentation was used as a base for the development of a promotora training curriculum (see Figure 1.) Next steps included

Piloting the presentation in the community and eliciting participant feedback, specifically asking their reason for attending, what they wanted to learn, and for any content recommendations. Presentations were modified based on this feedback.

Promotora guided monthly think tank exercises with coalition members to identify strategies for training. The think tank was composed of members, self-selected from the PCCCPP.

Review of available resources and existing education materials available from the Centers for Disease Control and Prevention, National Cancer Institute, Association of Reproductive Health Professionals, and others for potential inclusion in our curriculum. Although much of the information was good, some needed to be updated, translated into Spanish, and revised for literacy or cultural relevance.

Incorporating the modified presentation along with the new, revised, and translated materials into the curriculum. Materials were made available in both English and Spanish. Table 2 lists the training modules.

Table 2

Modules: Basic Cervical Cancer Curriculum

Modules	Content
Module 1	Comprehensive foundational skills for community health workers working in their community
Module 2	Cervical cancer statistics
Module 3	What is cancer?
Module 4	Female reproductive anatomy
Module 5	Human papillomavirus (HPV)
Module 6	Cervical cancer risk factors
Module 7	Cervical cancer
Module 8	Cervical cancer screening, diagnosis, and treatment
Module 9	Cervical cancer prevention
Module 10	Resources: Community resources, health services, Internet-based resources
Module 11	Policies and procedures

Stage 2: Training and Initiation of the Campaign

Fourteen Hispanic women who were informal leaders were trained on the curriculum. All but four trainees were connected to Title I schools; two were employed by community health centers, and two were members of neighborhood associations. All had completed high school. Promotoras were selected by coalition members based on experience and experience as advocates. The cohort attended a 2-day training session using the curriculum; the training was conducted by bilingual partnership members, including a gynecologist/cervical cancer expert, nurse practitioner, promotoras, staff from the university, and AHEC.

On completion, promotoras were expected to (a) provide basic HPV and cervical cancer information; (b) be familiar with the female reproductive system; (c) understand cervical cancer prevention and the role of HPV; (d) be familiar with local services, particularly those with bilingual staff, female providers, and that serve low-resource clients; and (e) help clients overcome barriers to receiving screening services.

Promotoras took an open-book test on the competencies and practiced their presentation skills with project staff to assure familiarity with content, receive guidance, and ensure fidelity. To pass to the next stage of training, each promotora scored at least 85% on the test and completed the practice presentation. The presentations were scored for accuracy, clarity, and ability to answer questions. Trainers encouraged promotoras to use notes and refer complicated questions to program staff. Promotoras who did not successfully complete this stage were coached by staff and shadowed more experienced promotoras, until basic skills were mastered. An analysis of community health worker training curricula by Kash, May, and Tai-Seale (2007) found that a limited number of training programs administered a skill assessment.

On completion of the training, the promotoras used training slides to design and adapt presentations to suit their teaching style and client difference. Presentations were placed in large easel-style flipcharts, which enabled ready access to content and adaptation to different venues. Information other than that provided through the training could be used after being vetted with the project and medical directors.

Promotoras worked individually and in teams to identify participants, focusing on underserved neighborhoods with limited access to resources. They recruited through formal and informal networks, including school districts, libraries, community organizations, churches, neighborhood associations, friends, and family. Locations varied from the expected, such as health centers, homes, schools, and health fairs, to nontraditional locations, including libraries, neighborhoods, churches, youth and athletic events, neighborhood events, and supermarkets. PCCCPP promotoras brought the information to women in locations easily accessible and respectful of time and transportation limitations. Although the focus of the campaign was Latinas, individuals from all groups were welcome and the bilingual (English/Spanish) presentations became a “family affair” often including husbands, sons, and daughters. Audience size varied from individual presentations to groups of 60, and the length of presentations ranged from 45 minutes to 2 hours (Table 3).

Table 3

Survey Results for One-on-One and Group Presentations, Study 1 and Study 2^a

Characteristics	One-on-One Presentations (n = 275)	Group Presentations (n = 886)	Study 1 Results (n = 174)	Study 2 Results (n = 837)
Gender
Female	90.5	76.8	83	78.7
Ethnicity
Hispanic	94.1	94.9	n/a	96.8
Age range (years)
18-25	6.5	11.8	4.0	11.8
26-40	39.7	41.3	55.2	25.3
41-55	39.3	26.6	19.0	50.2
55+	12.2	12.8	12.6	12.1
Client’s report on the quality of the service provided was
Excellent	—	—	42.0	78.2
Good	—	—	44.3	20.8
Fair	—	—	7.0	1.0

NOTE: n/a = not applicable, ethnicity was not collected in Study 1 but was collected in Study 2; — = one-on-one and group presentation was not linked to the anonymous community member survey, which asked client satisfaction items.

All values are percentages.

Stage 3: Feedback and Revision

The curricula and materials used by the promotoras in this first wave were kept current and responsive through a continuous feedback system. This iterative process used information from clients and evaluation data. Requests for information not included in materials that the promotoras were unable to answer, were forwarded to staff and the PCCCPP outreach and education workgroup. This information was used to refine materials and develop a FAQ sheet. Questions related to specific medical issues were forwarded to a gynecologist who replied within a week, allowing the promotora to respond to her client in a timely manner.

Process Evaluation

The process evaluation provided valuable feedback for the curriculum development. Two studies were conducted to evaluate participants’ assessment of the curriculum. The evaluation was conducted with a postpresentation anonymous survey offered only to persons older than 18 years. Participants completed a survey while the promotora was out of the room, which was placed in a sealed envelope and returned unopened to evaluators. Participants in the survey were invited to be included in a raffle for a $25 gift certificate.

Modifications to the survey were made based on feedback from promotoras and their clients. Findings are presented as Study 1 and Study 2. The process evaluation provided valuable feedback used as a tool to systematically assess and improve promotora services, content, and presentations.

Study 1: Process Evaluation

Study 1 included clients of the first 14 promotoras trained. The completion of the survey was voluntary and 174 clients completed the survey.

Demographics

The majority of the clients (75%) were between 25 and 54 years old; educational level ranged from eighth grade or less (15%) to more than a 4-year college degree (11%); one third of the participants did not have insurance.

Client satisfaction

Clients were asked to complete the Client Satisfaction Questionnaire (Roberts, Attkisson, & Stegner, 1983) to determine satisfaction with information and services received. Clients were asked to report on the quality of the service provided; 42% indicated excellent service, 44.3% reported good service, and 7% reported fair service (Table 3).

Study 2: Process Evaluation

Study 2 was conducted with 837 clients who received services from PCCCPP promotoras from April 2010 through October 2010.

Demographics

The majority (75.5%) of the clients were between 25 and 54 years old with an educational level ranging from eighth grade or less (12%) to more than a 4-year college degree (4.7%). The majority (96.8%) were of Hispanic or Latino origin. More than one third of these participants had no insurance coverage.

Client satisfaction

Study 2 clients were asked to complete the Client Satisfaction Questionnaire. When asked to rate the quality of service, 78.2% indicated excellent service, 20.8% indicated good service, and 1% indicated fair service (Table 3).

Discussion

Here, we present a number of important lessons learned that other practitioners may find helpful.

Length of Training

The cervical cancer training was divided into modules. The length of training sessions varied depending on the experience and needs of trainees. Some modules take as little as 2 hours. The complete training package takes 2½ days. Based on input from trainees, it was necessary to have a break between the first and last two training days, to give trainees time to study and absorb information. The design team created a flexible schedule based on feedback from the promotora trainees and the results from training assessment tests.

Supplemental Training

The coalition found it necessary to provide supplemental training workshops. Topics were chosen by the promotoras in response to clients’ needs, and include HPV and men, new HPV vaccine and screening guidelines, and other topics. Areas not directly related to cervical cancer were identified to address the myriad of pressing problems women deal with before they consider their own health. These included transportation, stress, housing, immigration, and payment assistance.

Updates

A time lag exists between approval of new technologies and protocols and development of related patient education materials, and their translation into Spanish. The collaborative relationship among technical experts, providers, community health centers, and promotoras allowed current information to be provided in a timely manner. This process underscored the importance of the CBPA principle of co-learning.

Balance of Information

After piloting the curriculum, the number of slides provided to trainees was reduced and some promotoras found the amount of information to be overwhelming. Others requested more in-depth information. This conflict was resolved through our “Ask the Provider” system, wherein questions from clients that promotoras are unable to answer are forwarded to our medical advisor, who responds within a week. Also, additional training was provided on finding and evaluating Internet sources of health information (English and Spanish).

Open-Book Testing

The method of open-book testing and encouraging the trainees to feel comfortable saying “I don’t know but I will find out” and referral of complicated questions to the medical program staff was designed to address the temptation to provide information outside of training content and still remain responsive.

Electronic Forms of Training and Outreach Materials

The cost of printing slides was high and difficult to disseminate. An electronic toolkit containing training and education materials was developed. Copies of slides are provided to promotoras without computer access.

Conclusion

The initial 14 promotoras trained in June of 2008 provided outreach and education to 708 individuals. The majority of the clients reported general satisfaction with the quality of services received and most of their needs were met. The process evaluation results underscore the importance of basic CBPA principles of shared decision making, co-learning, iterative, and collaborative process to the success of the program. As the program matured, training and outreach materials were updated and refined based on input from promotoras, clients, and process evaluation results. Client satisfaction rates improved. To date, the PCCCPP promotoras have provided services and information to more than 8,000 people. The flexibility of the curriculum developed supports Balcázar et al.’s (2005) findings that programs can ensure success through enabling promotoras to build on their existing competencies to provide cervical cancer information.

Process evaluation data collection methods were limited because of time constraints of the clients to participate in both the presentations and survey. Based on feedback from the promotoras and clients, the length of the survey was reduced. Limited time precluded the ability to administer a pretest to clients.

A cervical cancer researcher/provider consultant may prove to be a challenge to program replication. The medical expert assured access to current, accurate information. A cultural lag exists in underserved communities. This medical expert was able to bridge the information gap. As the PCCCPP toolkit is further refined, coalition members are considering Internet strategies that will provide improved access to current information.

Initial and ongoing promotora training continued to be necessary, which may prove to be a challenge to implementation in low-resource areas. Supplemental training was provided during monthly outreach meetings, which also provided support for promotoras and facilitated program oversight. These meetings were not costly but did rely on access to health care resources.

Some promotoras received requests for information beyond what was provided. This challenge was addressed through the “Ask the Provider” system. Coalition staff requested that any new information encountered be vetted with staff before use. In addition, continual training was provided. Additionally, this issue was addressed through training on “how to access and evaluate Internet sources of health information.”

This article demonstrates that a step-by-step process, grounded in the principles of CBPA with promotora leadership, can be effective in the development of a community responsive training curriculum. The participation of promotoras as leaders and trainees provided constant feedback that ensured that the curriculum was responsive and refined. The promotoras customized their presentations, resulting in flexible education and outreach tailored to the characteristics of each audience while maintaining integrity of the medical content. In this respect, the process is imminently transferable to other communities under similar circumstances. The purpose of this process was to create a curriculum that could be modified to be responsive to differences in venues as well as cultural and linguistic differences.

Both the training and educational outreach are rooted in the strengths of the promotoras and co-learning. The leadership of the coalition is based in an outreach workgroup, whose members included 21 promotoras who have been consistently active in coalition outreach and strategic planning. Client satisfaction is reflected in the clients of the promotoras who have become members of the coalition.

The entire process was strongly grounded in the basic principles of CBPA (Wynn et al., 2011) outlined in Table 1. The development and evaluation of the outreach activities, strongly demonstrated the efficacy and importance of an approach strongly rooted in principles of CBPA, which enabled the materials to be not only refined and approved but also responsive to changing needs in the community and changes in cervical cancer technologies and protocols. The importance of employing an iterative process based on community leadership from the promotoras and shared/collaborative decision-making to the success of the campaign is underscored in the process evaluation results between Study 1 and Study 2. The results from Study 1 and input from clients and promotoras were reviewed by coalition members and the curriculum workgroup and used to refine the training curricula and outreach materials. Client satisfaction with promotora services increased dramatically between Study 1 and Study 2. The partnership developed a training and outreach campaign led by the community, which built on community assets, responded to needs, requests and feedback, and built an effective collaboration that effectively leveraged the resources of promotoras, community leaders, community-based organizations, and the university.

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