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Title: Development and evaluation of a culturally tailored breast cancer brochure for American Indian women

Abstract: The product is a culturally sensitive brochure or leaflet on mammography screening intended for use among American Indian/Alaska Native (AI/AN) women. The leaflet used a 6-page letter design. On the first page, the motto of the project, “Shared love from generation to generation” along with the message “Breast screening saves lives” are displayed. The second page details information about breast cancer and its risk factors. It also provides information on how a woman can reduce her risk of breast cancer, the definition of a mammogram and the risks associated with getting a mammogram. The third page provides education about the frequency of mammograms and the visible physical changes of the breast that can be early signs of breast cancer. The fourth page includes information about breast cancer survivorship while the sixth page has a testimonial from a breast cancer survivor. This product is appropriate for use for all AI/AN women (preferably those 45 years old and above) regardless of tribal affiliation. It is also appropriate for medical providers who counsel AI/AN women about screening mammography.

Type of Product: Brochure

Year Created: 2014

Date Published: 12/19/2016

Author Information

Corresponding Author
Eleni Tolma
University of Oklahoma Health Sciences Center
801 N.E. 13th street
Oklahoma City , OK
United States
p: (405)2712017

Authors (listed in order of authorship):
Cara Thomas
Tecumseh Early Head Start

Norma Neely
American Indian Institute, University of Oklahoma

Elizabeth Chery
Oklahoma City County Health Department

Tewanna Edwards
Oklahoma Health Care Authority

Vickie Canfield
Community Member

Product Description and Application Narrative Submitted by Corresponding Author

What general topics does your product address?

Public Health, Social & Behavioral Sciences

What specific topics does your product address?

Cancer, Chronic disease, Community health , Community-based education, Women's health

Does your product focus on a specific population(s)?

American Indian/Alaska Native, Rural, Women

What methodological approaches were used in the development of your product, or are discussed in your product?

Community needs assessment, Community-academic partnership, Community-based participatory research , Focus group , Qualitative research, Quantitative research, Interview

What resource type(s) best describe(s) your product?

Educational Brochure

Application Narrative

1. Please provide a 1600 character abstract describing your product, its intended use and the audiences for which it would be appropriate.*

The product is a culturally sensitive brochure or leaflet on mammography screening intended for use among American Indian/Alaska Native (AI/AN) women. The leaflet used a 6-page letter design. On the first page, the motto of the project, “Shared love from generation to generation” along with the message “Breast screening saves lives” are displayed. The second page details information about breast cancer and its risk factors. It also provides information on how a woman can reduce her risk of breast cancer, the definition of a mammogram and the risks associated with getting a mammogram. The third page provides education about the frequency of mammograms and the visible physical changes of the breast that can be early signs of breast cancer. The fourth page includes information about breast cancer survivorship while the sixth page has a testimonial from a breast cancer survivor. This product is appropriate for use for all AI/AN women (preferably those 45 years old and above) regardless of tribal affiliation. It is also appropriate for medical providers who counsel AI/AN women about screening mammography.

2. What are the goals of the product?

a) To enhance awareness of the importance of breast cancer screenings among AI/AN women and provide some basic facts about breast cancer, including survivorship, in a concise, scientific and culturally sensitive manner.
b) To assist medical providers during their communication with the patient on breast cancer screening. The brochure can act as a tool or a stimulus for discussion between the medical provider and the patient.
c) To enhance the visibility of the Native Women’s Health project, a community and clinic-based project in Oklahoma that promotes screening mammography.

3. Who are the intended audiences or expected users of the product?

The intended audiences and expected users are a) AI women ages 45 and above who are eligible for screening mammography regardless of location and tribal affiliation, b) medical providers who work at tribal or Indian Health Services (IHS) clinics and counsel women on various women’s health issues including early detection of breast cancer, and c) researchers and practitioners who work toward the promotion of breast health among AI/AN communities. The brochure can be disseminated in both clinical and community settings.

4. Please provide any special instructions for successful use of the product, if necessary. If your product has been previously published, please provide the appropriate citation below.

There are no specific instructions for successful use of this product other than reading it thoroughly and preferably with the help of a medical provider.

5. Please describe how your product or the project that resulted in the product builds on a relevant field, discipline or prior work. You may cite the literature and provide a bibliography in the next question if appropriate.

The stagnant breast cancer mortality rates and the increased number of younger AI/AN women who are being diagnosed with breast cancer indicate that breast cancer is an important public health issue among the AI/AN community.1,2 In Oklahoma, where the study takes place, there has been an increased effort to promote mammography screening and breast health education through strong Tribal programs, including the Cherokee Nation Comprehensive Cancer Control Program.3 However, disparities still exist between Non-Hispanic White and AI/AN women regarding incidence and survival rates especially among the younger AI/AN women.3,4 In addition, certain tribal communities, especially those outside the metropolitan areas, are still in need of breast cancer control comprehensive programs.5 This health education product attempts to address this need.
The product was the result of a needs assessment conducted as part of a research project aimed at promoting mammography screening among American Indian women in Oklahoma from 2012 – 2015.6 During the needs assessment the Community Steering Committee (CSC) conducted a thorough review of existing educational material from various organizations including the Mayo Clinic C.I.R.C.L.E project, the American Cancer Society (ACS), Susan G. Komen ®, and other tribal health organizations and academic settings. The findings of this assessment were that a) a plethora of educational material in various formats exists and includes bookmarks, brochures and booklets; b ) the majority of the brochures developed in the late 1990s or in early 2000s were outdated since they promoted breast self-examination, which is no longer a recommended breast cancer screening modality; c) some brochures were too wordy with no pictures at all or too long in the form of booklets; and d) the majority of the educational materials were written at a literacy level between 2.6 and 9.9. The CSC concluded that the brochures were not attractive nor scientifically sound enough to be used for this project. Therefore, the CSC decided that we needed to create our own breast cancer brochure. In addition, during the needs assessment we conducted key informant interviews with the tribal clinic personnel. One of their recommendations was to develop patient aides such as brochures about mammography screening that are readable and attractive to the patients.

6. Please provide a bibliography for work cited above or in other parts of this application. Provide full references, in the order sited in the text (i.e. according to number order). .

1.White A, Richardson L, Li C, Ekwueme DU, Kau JS. Breast cancer mortality among American Indian and Alaska Native women, 1990-2009. A J Public Health 2014;104(S3):S432-S438.

2. Roubidoux M. Breast cancer screening in American Indian and Alaska Native women. J Cancer Educ. 2012 27(1):66-72.
3. Campbell EJ, Martinez SA, Janitz AE, et al. Cancer incidence and staging among American Indians in Oklahoma. Oklahoma State Medical Association Journal. 2014 107(3):99-107.

4. Campbell J, Gandhi K, Pate A, et al. Five-Year cancer survival rates in Oklahoma from 1997 to 2008. Oklahoma State Medical Association Journal. 2016 109 (7,8):318-332.

5. Martinez SA, Janitz AE, Erb-Alvarez J, Mowls DS, Campbell JE, Anderson T. Cancer among American Indians-Identifying priority areas in Oklahoma. Oklahoma State Medical Association Journal. 2016 109 (7,8): 374-384.

6. Tolma EL, Engelman K, Stoner J, et al. The design of a multi-component intervention to
promote screening mammography in an American Indian Community: The Native Women’s Health Project. AIMS Public Health. 2016;3( 4 ):933-955. doi: 10.3934/publichealth.2016.4.933

7. Minkler M, Wallerstein N, eds. Community-based participatory research for health. San Francisco, CA: Jossey-Bass; 2003.

8. Tolma EL, Batterton C, Hamm RM, Thompson D, Engelman KK. American Indian women and screening mammography: Findings from a qualitative study in Oklahoma. American Journal of Health Education 2012;43(1):18-30.

9. Tolma E, Stoner JA, Li J, Kim Y, Engelman KK. Predictors of regular mammography use among American Indian women in Oklahoma: a cross-sectional study . BMC Womens Health. 2014;14(101).

10. Oeffinger KC, Fontham EH, Etzioni R, et al. Breast cancer screening for women at average risk: 2015 guideline update from the American Cancer Society. JAMA. 2015;314(15):1599-1614.
11. Breast Cancer Screening Draft Recommendations. USPSTF website. http://screeningforbreastcancer.org/ Published April 2015. Accessed October 20, 2105

12. Hinyard LJ, Kreuter MW. Using Narrative Communication as a tool for health behavior change: A conceptual, theoretical and empirical overview. Health Educ Behav 2006;34(5):777-792.

13. Goodman A. Storytelling as Best Practice. 7th ed. L.A, California: The Goodman Center; 2015.

14. Tolma E, John R, Garner J. Evaluation of United States Department of Agriculture-sponsored consumer materials addressing food insecurity. Am J of Health Promot. 2007;21(3):164-174.

15. Hedman AS. Using the SMOG formula to revise health-related document. American Journal of Health Education. 2008 39(1):61-64.

16. Green LW, Kreuter MW. Ecological and Educational diagnosis. Health Program Planning: An educational and ecological approach 4th ed. New York, NY: McGraw-Hill; 2005:146-189.

7. Please describe the project or body of work from which the submitted product developed. Describe the ways that community and academic/institutional expertise contributed to the project. Pay particular attention to demonstrating the quality or rigor of the work:

  • For research-related work, describe (if relevant) study aims, design, sample, measurement instruments, and analysis and interpretation. Discuss how you verified the accuracy of your data.
  • For education-related work, describe (if relevant) any needs assessment conducted, learning objectives, educational strategies incorporated, and evaluation of learning.
  • For other types of work, discuss how the project was developed and reasons for the methodological choices made.

The study is part of a larger project, the aim of which was to develop and evaluate a theory-based culturally sensitive intervention to promote mammography screening within an AI community in rural Oklahoma.6 The study was implemented via Community- Based Participatory Research (CBPR).7 The CSC with the project coordinator and her Community Research Assistant (CRA) (i.e. a community member who was trained and reimbursed to do research) led the project along with the academic team. All staff members were American Indians who lived in the region. They all received a basic training in CBPR, followed by specific training sessions on research such as qualitative research, process evaluation, data entry, etc. The priority population consisted of AI/AN women with no prior history of breast cancer, ages 40-65 years, and with no mammograms during the last 2 years. The CSC consisted of breast cancer survivors, lay community members, tribal clinic staff and members of local coalitions and state organizations.
Two preliminary studies took place. The first qualitative research led to the development of the Women’s Health Survey (WHS) that was then administered to a random sample of 255 Native women (second study) with the purpose of identifying the prevalence and the relative importance of the AI/AN women’s beliefs about mammograms. A description of the methodology and results of those two studies can be found elsewhere.8,9 One of the findings of the quantitative study was that women with higher scores in knowledge on mammogram screening (by 1 point) had 52% higher odds of having past mammograms than those with lower knowledge scores. The results of the quantitative data analysis were then subsequently shared with the CSC and the broader community by conducting three focus groups (n=14) and 16 key informant interviews. The purpose of the qualitative research was to assess whether the results of the quantitative data analysis truly reflected the needs and thoughts of the local American Indian women on mammography screening. The qualitative research was conducted by the project coordinator, the PI (the first author), and a Graduate Research Assistant (GRA) who was also an American Indian from the region where the study took place. The PI, who has vast experience in qualitative research, trained all her staff on how to conduct interviews and analyze qualitative data. Once the data were analyzed by the research team, the results were shared with the CSC for further discussion.
One of the conclusions we derived was that women either lack knowledge of mammography screening guidelines or are confused as to what guidelines to follow (i.e. the ones recommended by the American Cancer Society [ACS] versus the ones recommended by the U.S. Preventive Services Task Force [ USPSTF]). Specifically, the ACS recommends for women at average risk an annual screening mammogram starting at the age of 45 followed by a mammogram every other year starting at the age of 55. 10 The USPSTF recommends a screening mammogram every 2 years for women ages 50-74 year. 11 None of these two scientific entities recommend a breast exam; however, the ACS recommends that all women be familiar with how their breasts normally look and report any changes to their health provider immediately. We also discovered that women lack knowledge of what the actual mammography process entails. In addition, through meetings with the medical director and his staff, one of the issues discussed was the lack of patient aides such as brochures about mammography screening that are readable and attractive to the patient. By triangulating the results we obtained from these three different sources (i.e. quantitative research, qualitative research and discussions with CSC), we concluded that lack of knowledge about mammography screening had to be addressed. One way to address this unmet need was through the development of the breast cancer brochure, which will be discussed in this paper.

8. Please describe the process of developing the product, including the ways that community and academic/institutional expertise were integrated in the development of this product.

The development of the product took approximately 2 years. The academic team did an initial literature review from reputable sources such as the National Cancer Institute, USPSTF, and Suzan G. Komen ® to identify the scientific information that will be included on the brochure. This included information on current mammography guidelines, risk and protective factors of breast cancer, survivorship, early detection signs and screening recommendations.
Because there is currently a disagreement within the medical community as to which guidelines to follow, upon consultation with the medical director we recommended that AI/AN women start routine mammography between ages 40-49 and then upon discussion with their personal physician and the presence or absence of risk factors to continue screening every 1-2 years. The CSC reviewed the brochure multiple times for comprehensibility, formatting, and overall appearance. The CSC suggested using two colors; the pink color that symbolizes breast cancer and the turquoise color which is a popular color in the AI/AN culture. In addition, we included pictures of our steering committee members with their grandchildren to promote personal relevance and support the motto of our project which is “Shared love from generation to generation.” We also included a picture of an American Indian woman on the first page designed by one of our steering committee members who is an artist.
Moreover, based on the concept of storytelling as an effective communication strategy, it was important that the text evoked an emotional response so that the reader would better retain the information presented on the brochure. 12,13 Therefore, we incorporated a testimonial of a breast cancer survivor who was also a member of the CSC. The need to include a testimonial of a breast cancer survivor also stemmed from the results of the pretesting (described later in this section) in which the women stated that they would like to see more emphasis on survivorship and that “breast cancer is not the end.” Another technique we used to draw people’s attention was the use of a “hook”.13 The beginning of every section was introduced in the format of a personalized question rather than a statement. For instance, instead of starting a section with the statement “The risk factors for breast cancer are…”, the introduction started with “Am I at risk for breast cancer”? By doing that, the reader was more likely to be drawn to the story and pay attention to the text that followed.
In order to promote awareness of the project in the broader community, we included the logo of the project that depicts the medicine wheel with an eagle feather hanging from a pink ribbon embracing the medicine wheel. Both the eagle feather and the medicine wheels are sacred symbols in the AI/AN community. The development of the logo was the result of the focus group research and in consultation with the CSC.
Once the first draft was developed, it was then pretested with a group of local American Indian women. The pretesting took place during a local outreach event. The project coordinator with the CRA conducted the pretesting. Fifteen women were interviewed about the brochure. An assessment form was developed to pretest the brochure. The one-page survey was an adaptation of an evaluation form the first author used in previous research.14 The women were asked to rate the brochure in terms of content and readability.
The specific aspects addressed in terms of content were the following: a) Relevance to breast cancer project, b) Purpose is clearly stated in title or introduction, c) Material is appropriate for lay audience, d) Reading level of material is appropriate for lay audience, e) Major ideas are summarized or reviewed to reinforce key concepts, f) Objective and fair presentation of subject matter with no commercial sponsor promotion or bias, g) Material is well organized, and h) American Indian culture is acknowledged. In terms of readability the following aspects were addressed: a) Vocabulary is familiar to low income/lay audience with minimal use of technical terms; b) Layout and design of the material are appealing and eye catching; c) Illustrations are simple, appropriate, clearly labeled and appear close to text references; d) Active voice used in positive, personal writing; and e) Headings and other cues direct attention to key points.
The participants were asked to rate each aspect in a five category scale from “unacceptable” to “excellent” and to provide an overall evaluation of the brochure and any additional comments. The majority of the interviewees rated each aspect good. Very few rated each aspect as excellent, and one person rated “relevance to breast cancer project” as average. Some of the comments we received indicated that the brochure design and the colors were eye catching, especially the picture at the front. Other women stated that the brochure needed additional information on survivorship, which we added in later revisions. In addition, the brochure was assessed for its readability by using the SMOG readability formula.15 The initial rating gave the brochure a tenth grade reading level. This prompted the research team to simplify some of the polysyllabic words. The final reading level of the brochure is at the ninth grade level. Although the desirable readability level is the fifth grade level, our results are not surprising since similar brochures as noted earlier were also written at this level.

9. Please discuss the significance and impact of your product. In your response, discuss ways your product has added to existing knowledge and benefited the community; ways others may have utilized your product; and any relevant evaluation data about impact, if available. If the impact of the product is not yet known, discuss its potential significance.

As stated earlier, the development of the breast cancer brochure was the result of a needs assessment during which we found a lack of attractive and scientifically sound brochures on mammography screening for this specific priority population. In addition, the use of CBPR during the development of the brochure increased the odds of using the product upon completion of the project and promoted shared identity among the academic, clinic and lay communities. The product’s significance is as follows: a) the brochure is culturally sensitive and appropriate and can be shared within any AI/AN community, b) the brochure is artistic and at the same time scientific- to the best of our knowledge no published research exists that describes the science behind the design of a similar brochure, c) it is up-to-date in terms of mammography screening guidelines that emphasize the importance of patient-physician discussion, and d) it can be used in both community and clinical settings.
In terms of impact, the brochure has been disseminated among AI/AN women who participated in the project and among health care providers of the collaborating tribal clinic. A soft copy of the brochure was sent to another local urban IHS clinic in Oklahoma City. Copies were also given to a local advocacy group. The brochure was also displayed at various local and national scientific conferences and promoted via local outreach activities. The potential impact of the product can be huge since it can be distributed electronically via the funder source’s website or any other breast health advocacy groups.

10. Please describe why you chose the presentation format you did.

As stated earlier, choosing the brochure as a venue to promote awareness and education about mammography screening was one of several formats that we used during this project. The decision to develop a brochure came during the planning phase in which the steering committee members were asked to decide what kind of intervention strategies to use based on two main parameters: feasibility and importance.6,16 Using a brochure as a medium to promote knowledge was suggested as highly feasible and important. In addition, the suggestion to develop a brochure also came through our discussions with the clinic representatives as described earlier.

11. Please reflect on the strengths and limitations of your product. In what ways did community and academic/institutional collaborators provide feedback and how was such feedback used? Include relevant evaluation data about strengths and limitations if available.

The strengths of the product include the following: a) the brochure is short in length and easily transported, b) it has been tested for content validity (including cultural sensitivity) and readability, c) it was designed by incorporating principles of health communication and particularly of storytelling to further promote use within the intended population, d) the community members (both lay people and clinic staff) were involved in the development and evaluation (i.e. pretesting) of the brochure, which further promoted sustainability, e) the brochure does not promote any specific breast cancer screening recommendations (ACS or USPSTF) beyond the importance of discussing this topic with the medical provider and thus reduces further confusion among women as to which guidelines to use, and f) the brochure does not promote Breast Self- Examination and instead it promotes the notion of a woman being aware of any changes related to her breasts.
There also a few limitations that need to be noted. First, the product does not currently have a home outside the academic institution of the PI, and therefore, any future updates (in terms of content) and future production is limited due to the lack of funds. Next, the brochure was written entirely in English and therefore older AI/AN women who do not speak English will not be able to read the brochure unless someone reads it for them. Finally, its high readability level (ninth grade) can be a barrier for some AI/AN women. Further research is needed to enable us to lower the readability level without compromising the scientific value of the brochure.
As stated previously, the community provided continual feedback as to how to craft the brochure. The research team designed the first draft by incorporating the scientific facts; however, it was the community (lay people and clinic staff) who reviewed the brochure numerous times and provided information in regards to content, formatting, pictures and colors. For instance, upon consultation with the medical director we provided balanced information about the use of screening mammograms in terms of benefits and risks of getting mammograms such as over diagnosis and over treatment. The research team also provided the assessment form; however, it was the project coordinator along with the CRA who adapted the form to the project and pretested the brochure with a sample of AI women.

12. Please describe ways that the project resulting in the product involved collaboration that embodied principles of mutual respect, shared work and shared credit. If different, describe ways that the product itself involved collaboration that embodied principles of mutual respect, shared work and shared credit. Have all collaborators on the product been notified of and approved submission of the product to CES4Health.info? If not, why not? Please indicate whether the project resulting in the product was approved by an Institutional Review Board (IRB) and/or community-based review mechanism, if applicable, and provide the name(s) of the IRB/mechanism.

The project was implemented via CBPR. One of our first steps was to convene and engage a steering committee that represented all stakeholders including breast cancer survivors, lay community members and clinic staff. Our next step was to provide a sequence of trainings to the stakeholders and project staff on CBPR. The purpose of the trainings was to demystify the word research and explain in lay terms what CBPR meant. The training provided an overview of CBPR; however, the actual practice of CBPR was done during the implementation of the project in which community members, either in the form of CRAs or volunteers, were primarily trained to conduct qualitative research. In order to promote mutual respect in the decision making process, we developed a diverse steering committee that represented both the clinic as well as lay community members. We engaged everyone in the decision making process during the steering committee meetings by having an open forum of discussion. If a steering committee member could not participate at a meeting and voice his/her suggestion during the decision-making process, the project coordinator made sure we received that person’s input at a later time.
The research project has been approved by the University of Oklahoma Health Sciences Center (OUHSC) Institutional Review Board (IRB). All co-investigators including the academic staff, the GRA, the project coordinator and the CRAs received training on ethics conducting research with human subjects by the OUHSC IRB staff. The product has been approved by the OUHSC IRB. There is no community-based review mechanism to approve the product; however, the product was approved by the tribal clinic director and the vice-chairman of the tribe. In addition, the tribal council issued a resolution that indicated the continuous support of the project. Regarding shared work and shared credit, community members who participated in the research were acknowledged during oral and poster presentations of the research project at local and national conferences. All presentations have been approved by the tribal leadership.