Translating new science into the community to promote opportunities for breast and cervical cancer prevention among African American women

Abstract Background New evidence has found breast and cervical cancer risk factors unique to African American women. Thus, there is a significant need to increase their knowledge and understanding of relevant risk factors and the potential protective benefits associated with breast‐feeding and HPV vaccination. The National Witness Project is a robust, evidence‐ and community‐based lay health advisor programme that uses group education, navigation and survivor narratives to increase cancer screening among diverse underserved women. Methods A multi‐phase, community‐based participatory research study was conducted across three sites in Buffalo, NY, New York City and Arkansas between October 2016 and January 2017. Pre‐/post‐test surveys were administered during volunteer trainings and community programmes. An evaluation survey was also administered at the Annual Meeting for Education and Networking. Paired sample t tests were used to compare pre‐/post‐test survey scores. Results Trainee survey results showed the overall mean per cent correct pre‐/post‐test scores were 47.7% (SD: 21.87) and 79.2% (SD: 16.14). Altogether, 31 educational programmes reached 332 community participants. Participants’ breast and cervical cancer knowledge scores were significantly higher after the education programme (84.4%) than before (55.3%) with a mean change score of 29% (P ≤ .001). Conclusion This paper reveals the underlying complexities to update the educational curriculum content of a multi‐site, community‐based outreach organization. The new curriculum significantly improved African American women's knowledge about breast and cervical cancer by 10%‐36%, clearly demonstrating that this information was new to them. The need for education programming in African American communities to disseminate cancer prevention and risk information remains high.


| INTRODUC TI ON
Recent data show that the gap in breast cancer incidence between white and African American women is closing. 1 More specifically, African American women are diagnosed more frequently than previously recognized, yet death rates still remain comparatively much higher. 1 New scientific research from the African American Breast Cancer Epidemiology and Risk (AMBER) Consortium also suggests that higher parity and lack of breast-feeding increase African American women's risk of developing ER-and triple-negative breast cancer (TNBC). 2 The data also demonstrated that this increased risk of TNBC can be mitigated with breast-feeding. 2 These findings have the potential to drastically impact the incidence of breast cancer and related outcomes in African American women in the United States as these women are disproportionately affected by ER-breast cancer, and compared with white women, they have more children 3,4 and are less likely to breast-feed. 5,6 In addition, following Hispanic women African American women in the United States are also more likely to get cervical cancer 7 and have a mortality rate twice that seen in white women. Significant racial health disparities persist, despite the decline in cervical cancer rates seen across the United States. African American women are more likely to die of cervical cancer due to a combination of factors including later stage at diagnosis, [8][9][10][11] less aggressive treatment 11,12 and less access to care. 10,12,13 AMBER's findings necessitate a complete paradigm shift in cancer prevention and control efforts among African American women. There is a significant need to increase breast and cervical health knowledge and understanding among African American women regarding their risk of ever developing breast and cervical cancer, and the potential protective benefits associated with certain health behaviours (ie breastfeeding and cervical cancer screening).
Significant technological advances and targeted programmes for educating communities have not been fully utilized and are available resources to enhance both the implementation and dissemination of new breast and cervical cancer prevention and risk information. The National Witness Project (NWP) model was developed by Erwin in 1991 in collaboration with African American cancer survivors to reduce breast and cervical cancer disparities among African American women through faith-and community-based educational programmes. 14,15 NWP is one of the most robust and lasting evidence-based lay health advisor (LHA) programmes using group education, navigation, empowerment messages and survivor narratives to increase breast and cervical cancer screening among African American women in community settings. 15,16 The NWP model was developed with a theoretical foundation in health education, learning styles and ethnographic fieldwork. 17,18 The selected behaviour change theories were especially relevant to address breast and cervical cancer disparities while taking into account the specific cultural and educational needs among rural underserved African American women in Arkansas, where the programme was originally developed. Over the past 28 plus years, the NWP model has been implemented, replicated and disseminated in over 40 sites in 22 states, with over 400 trained volunteers, reaching up to 10 000 women annually. 1,19 Currently, there are 18 active sites within the NWP network that continue to demonstrate capacity and sustainability for programme implementation. In the 10 years since the NWP was listed on the National Cancer Institute's (NCI) Cancer Control PLANET website as a Research-Tested Intervention Program, both screening and risk-reduction guidelines have changed (eg ages and frequency of mammography, de-implementation of breast selfexamination, availability of human papillomavirus (HPV) vaccine to prevent cervical cancer and risks for TNBC), especially for African American women. These changes have resulted in a significant need to revise the NWP curriculum to disseminate the most recent science and to issue a call-to-action for African American women to address their breast and cervical cancer risks, incidence and mortality disparities. This paper presents the systematic approach used to update the NWP educational programme curriculum and evaluate its effectiveness among participants who attended educational programmes as part of a pilot study. The first objective in this effort was to update and strengthen the NWP educational curriculum to include new scientific content relevant to breast and cervical cancer prevention in African American women. The second objective was to determine the suitability and effectiveness of the new curriculum among participants attending a NWP educational programme at three pilot sites prior to its dissemination and implementation throughout the NWP network. A unique aspect of this study is the capacity building that occurs at both the community partner level (ie NWP sites) and at the community participant level (ie African American women).
Both levels of engagement are central to a community-based participatory research (CBPR) approach and in line with the mission of the original NWP model. These objectives were accomplished using a progressive, four-phased approach. What follows is a report of the results and findings from each of the four phases.

| ME THODS
Phase I focused on revising the curriculum using a CBPR approach that involved multiple and iterative processes in which the community partners worked alongside the scientists to review the curriculum. The next phases related to a pilot implementation study of the new curriculum at three NWP sites and dissemination of the pilot study results to the national members. More specifically, phase II involved training NWP staff at three sites to deliver the new curriculum as part of the CBPR education programme, and phase III examined its acceptability, relatability and ability to educate participants attending a NWP event.
Phase IV involved dissemination of the new education curriculum to NWP members attending the Annual Meeting for Education and Networking (AMEN) and subsequently revising the curriculum in light of their evaluation and feedback.

| Sites and communities for testing the NWP curriculum
The pilot study of the feasibility and educational effectiveness of the new curriculum was conducted across three established NWP sites located in Buffalo, New York (WNY), New York City (NYC) and Little Rock, Arkansas (AR). These sites were chosen because of established research collaborations with investigators and their ability to conduct the pilot implementations of the new curriculum in less than three months. Also, training requirements were minimal in WNY and NYC as both were versed in the technology used during data collection.
The population of African American individuals in each of the study locales is comparatively higher than the national average of 12.2%. 20 In Buffalo (Erie County), 37.3% of the population is African American (~97 000 individuals). 21 Breast cancer mortality rates in this minority population are higher than other minorities and also the highest in New York State. 22,23 The more than two million African Americans living in NYC represent 24.4% of its population. 22 Breast cancer mortality rates are higher in African American than white women in this city, although its breast cancer disparities mirror national trends. 23,24 The AR site covers the eastern Mississippi River Delta region and currently serves 14 predominantly rural counties comprised of mostly very poor African American individuals. 25,26 When compared to white women in the Delta region, or even other African American women from other areas within the Delta region, a similarly disadvantaged region (ie Appalachia), and the national average, the highest breast cancer mortality rates are in the African American women in AR's service area. 25  The research was conducted by local staff and volunteers at the three site locations with support from the cancer centre. Study procedures were approved by the research ethics board (WNY) and deemed as exempt by IRB (NYC). The AR site is a community-based organization without affiliations to an academic or cancer centre and was included in the Institutional Review Board approval.

| Phase 1: updating the national witness project curriculum
In this phase a one-day collaborative forum was held in May 2016.
Investigators, together with four scientific consultants and NWP site staff, met to update the original NWP education curriculum, its presentation to the community, and develop training material for the LHAs. The consultants were selected for their expertise in breast cancer epidemiology, African American cancer disparities, social and behavioural science, vaccine-related cancer prevention (eg HPV) and cancer genetics. Prior to this undertaking, all had previously contributed to the NWP evolution, dissemination and implementation efforts.

Phase 1
Translation of the scientific updates into the existing NWP model

Phase 2
Training the NWP teams in three sites to conduct the new programs

| Phase 3: pilot implementation of the new curriculum
For the CBPR pilot implementation, each site delivered a minimum of nine community educational programmes between October 2016 and January 2017. Programmes were held in churches, community centres or other accommodating facilities and were open to all adults wanting to attend. Inclusion criteria for the pilot study (ie completion of the pre/post programme assessments) limited participants to African American women ages 18 and above. Staff read a study information sheet aloud to eligible participants prior to initiating the education programme and allowed time for any questions about the study. Those who agreed to participate provided verbal consent and were given a copy of the study information sheet.
A contact card was distributed to participants to collect their demographic information, recent breast and cervical cancer screening history (ie ≤12 months and ≤3 years) and willingness to be contacted in the future for other programmes and/or research. Subsequently, pre-and post-programme questionnaires were used to assess their breast and cervical cancer-related knowledge, perceived risk and screening-related behavioural intentions (ie attitude, self-efficacy, intent). Item measures were presented as questions or statements on PowerPoint slides and were also read aloud to address any lit- Participants who were eligible for breast and cervical cancer screening were contacted at 2 weeks following the educational programme to assess knowledge, retention, dissemination, risk perception, self-efficacy and intent for breast and cervical screening.
Participants who were non-adherent to screening guidelines were contacted again at 2 months to assess dissemination of programme content and screening intent/completion.

| Pre/post train the trainer survey results (Phase II)
Training across the three pilot sites resulted in a total of 24 trained individuals. There were seven LHAs, four role models, seven staff

| Pre/post pilot implementation survey results (Phase III)
A total of 31 educational programmes were piloted (WNY = 13, AR = 9 and NYC = 9) and reached a total of 332 African American TA B L E 2 Witness project pilot programme summary by national site (study phase 3)

| Annual meeting for education and networking evaluation survey results (Phase IV)
Evaluation survey results regarding the new curriculum content were collected from participants in attendance during the AMEN and are summarized in Table 4. A total of 103 participants from 14 NWP sites attended the AMEN. As shown, the average mean range for the 10 items regarding acceptability of curriculum content and format ranged from 4.23 to 4.65 and the average was 4.61 out of 5.
The average mean for the breast cancer items was 3.82 out of 5, and the average mean for cervical cancer items was 3.86 out of 5. The two lowest rated items on new breast cancer information had average means of 3.72 and 3.74, respectively, and covered information on incidence and parity specific to African American women.

| D ISCUSS I ON
We conducted a CBPR approach including four phases to update the NWP educational curriculum and evaluate its effectiveness among participants who attended education programmes as part of a pilot study. The first phase resulted in the production of the updated Our findings expand upon the limited research that has previously been conducted on the delivery of faith-based, African American-focused LHA-led education programmes to increase breast [33][34][35] and cervical cancer health knowledge. 36 We are the first to report on a CBPR approach to update curriculum content in order to more broadly disseminate important scientific findings relevant to breast and cervical cancer prevention and risk (ie breast-feeding and HPV vaccination) that is also culturally tailored to African American women. Prior research on faith-based cancer education and lifestyle interventions among racial ethnic minority groups suggest that these organizations have a unique position to deliver health information and services to underserved communities and many cancer prevention researchers have used churches as health intervention settings for cancer education especially among African Americans. [36][37][38][39] In addition, our findings also expand upon the NWP as a longstanding community-based breast and cervical cancer educational programme that targets underserved African American women nationally to increase awareness and understanding, and promote routine screening for breast and cervical cancer. As the science of cancer continues to evolve and new information is available regarding risk and behaviours to reduce risk (eg breast-feeding and HPV vaccination), it is essential that this critical information be incorporated into this multi-site programme in order to reach individuals in various communities at a grass roots level. This article reveals the complexity of the process necessary to update educational curriculum content for a multi-site, community-based outreach organization such as the NWP, as well as evidence demonstrating the need for this information in these communities. It was essential to receive perspectives, relevant content and evaluation from representatives described in each of the four phases of the research for the final American women. The information on the protective benefits of both breast-feeding and the HPV vaccination relates to behaviours that either occur or are recommended at younger ages in comparison with relevant cancer screening ages for both breast and cervical cancer and therefore apply to a broader age group of women.
The new educational content on breast-feeding and HPV vaccination serves as an opportunity to expand the focus for conducting the NWP programme and outreach with multi-generational African American audiences.
To our knowledge, this is the only study that has tested a community-based educational curriculum using the NWP model to deliver new scientific content (eg breast-feeding, parity and the HPV virus) regarding breast and cervical cancer risk and opportunities for risk reduction targeting underserved African American women.
Many of the women in these communities were unaware of or very few had been exposed to information on the cancer prevention ben-

| LI M ITATI O N S
There are limitations to our study as this was not a randomized con- Thus, we were unable to look at potential differences by level of education among participants. The addition of multiple novel topics (ie parity and breast-feeding and HPV vaccination) required additional time to explain and allow for participant questions.

| CON CLUS ION
This study demonstrated that updates in scientific content and format changes can be successfully adapted into the community-

ACK N OWLED G EM ENTS
We appreciate the assistance of Xiaoxi Sun with preliminary analyses and Pathu Sriphanlop for data entry support. Special thanks to the members and directors of the Arkansas, Buffalo and Harlem Witness Project sites for conducting the pilot programmes, as well as all of National Witness Project (NWP) sites across the US and the NWP Board of Directors who were integral partners throughout the research process. This study was funded by Roswell Park Alliance Foundation.

CO N FLI C T O F I NTE R E S T S
All authors have no financial interest in this study and no conflicts of interests to disclose.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study are available from the corresponding author upon reasonable request.