On the Crow reservation, as they have for generations, groups of women sit together and joke and chat. But it is in these woman-to-woman conversations that there is a significant change. Words once considered taboo in the tribe—"Pap," "cervical cancer," and "breast"—now are common in the mix of Crow and English discussion. This change has occurred due to the efforts of those working with the Messengers for Health program (hereafter called Messengers), a community-based program that aims to change health disparities regarding low rates of cancer screening among Apsaalooke (Crow Indian) women.
This topic presents the development and implementation of the Messengers for Health (MFH) program. This project is a community-based participatory research (CBPR) project, in which community members and university staff and students are involved in all phases of the research process. Thus, the approach to the writing of this topic is somewhat unique compared to usual academic writing and it is presented in a more traditional storytelling fashion. The content of this topic came from several discussion sessions where people involved in the project shared stories about the impact of, and lessons learned from, our program. Discussions took place among lay health advisors (LHAs) of the program, board members, project staff, and past and current student staff members. Notes were taken at these meetings and everyone was invited to write anything they felt was important and send it to the first author. Board members and staff met and decided on the most important sections to include in the topic. The first author compiled and organized the quotes and stories into a rough draft. This draft was presented to board members and project staff who, in a series of meetings, went through the text line by line, editing for clarity, making sure that the topic accurately reflected the program, and ultimately agreeing on all content. Board members wanted to make sure that the language was simple and free of jargon. The result is this topic, in which we present our project.
THE STRENGTHS OF THE APSAALOOKE (CROW INDIAN) PEOPLE
The Crow Tribe has approximately 11,000 members, of whom 8,000 reside on the reservation. Many tribal members speak Crow as their first language, which reveals the strength and maintenance of the culture. They are originally called "Apsaalooke," or "children of the large-beaked bird." Apsaalooke people are known for the strength of their clan system and their strong family ties. The reservation is rural and encompasses approximately 2.3 million acres in southern Montana, including the Wolf, Pryor, and Big Horn mountain ranges. As Chief Arapooish said, "The Crow Country is in exactly the right place. Everything good is to be found there. There is no country like the Crow Country."
If there is one word that could describe the culture of the Crow people, it would be respect . Respecting yourself, others, and the environment is the foundation of the Crow culture. Traditionally, Crow women are raised to be respectful of their bodies, in how they behave, and how they dress. The importance of modesty for Crow women is related to the concept of respecting one’s body. For the Messengers project to be successful in dealing with very personal health issues, the project had to be sensitive to this important characteristic of Crow women.
The respectful ways in relating to each other not only exist in the immediate family, but also in the extended family. The Crow people are close-knit as a family. It is common for relatives to visit each other at their homes and spend quality time together. It is important to note that in the Crow culture, one’s clan, immediate family, and extended family are very close and these ties are extremely important. For example, a cousin is equal to one’s brother or sister, an aunt is the same as one’s mother, and an uncle to one’s father. These strong clan and family ties form the basis for the information networks of communication and impact all relationships. The Messengers project has utilized these networks to reach out and become set within the community.
The Crow Nation is a matrilineal tribe, so women play a very important role. Women are given much respect because they are the givers of life. They are strong spiritually, emotionally, and physically to keep the family together. Women’s role in the family dynamic is that of givers . In our project, we often use the phrase, "Women form the backbone of the family and the tribe." When Crow women want something to get done, it gets done. Strong Crow women have formed the foundation of the Messengers project. Crow culture provides valuable resources that were used throughout the development of the Messengers project to improve the health of the people.
BEFORE MESSENGERS FOR HEALTH
There is no Crow word for cancer and before this project, saying this word out loud was to ask for it to come upon you. Women did not talk with other women about cancer screenings or share with others—including family members—when they had a cancer diagnosis. Women received cancer diagnoses alone, went through treatment alone, and often only at the end of their lives shared their diagnosis. There was a lack of communication between mother and daughter relationships regarding sex. The only time the topic of sex was mentioned in conversation was when Crow women sat around visiting and someone would tease someone else in a joking manner. It is difficult to convey the strength of these cultural taboos and the efforts it took for Messengers to break through these barriers. Not only are women now talking about cancer screenings to each other, but they are approaching project staff in public and asking for appointments to be scheduled. Cancer survivors are speaking out in public and a support group has started where people publicly show that cancer is not a death sentence.
Before Messengers, most women were unaware what a Pap test was and did not know that cervical cancer can be prevented. In our initial survey, conducted before we started the project, we found that 37% of the women had not had a Pap test in the previous year, 34% had not heard of a test to check for cervical cancer, and 71% reported not having read or heard anything about cervical cancer in the past year. Regarding risk factors, 55% of women did not know that a woman is more likely to get cervical cancer if she had sex at an early age, and 29% did not know that a woman is more likely to get cervical cancer if she had many sexual partners. Also, more than a quarter of the women surveyed responded "No" to a question asking if there are things a woman can do to prevent or control cervical cancer. These results from our initial survey showed that an important gap existed regarding cervical cancer education and screening. A second survey several years into the program showed significant changes in these statistics (see "Evaluating the Impact on the Crow Community").
BACKGROUND ON THE PARTNERSHIP-IMPLEMENTING CBPR
Messengers is filled with Crow cultural values to successfully change attitudes and behaviors surrounding cancer prevention. This was ensured through the use of a process of doing research called CBPR. CBPR enables for true partnership, collaboration, co-learning, and hence, true change (Wallerstein & Duran, 2006). Native Americans have many reasons for preferring CBPR projects as opposed to conventional research (Burhansstipanov, Christopher & Schumacher, 2005; Strickland, 2006). There are many recommendations for conducting appropriate research with Native communities, including respecting tribal diversity, building on tribal strengths, prioritizing the needs of the community, and ensuring that the community receives benefits from the research (Christopher, 2005). MFH obtained Institutional Review Board (IRB) approval from the university and also went through the Indian Health Service (IHS) Billings Area IRB. In addition, although the Crow tribe does not have a formal IRB, the project received approval from the Crow tribal chairman and the Billings Area service unit director. When working with Native communities, is it necessary to respect tribal sovereignty (Laveaux & Christopher, 2009).
Messengers is committed to following the principles of CBPR; for example, our Community Advisory Board, called the Messengers Executive Board, is closely engaged with all steps and aspects of the project. In research projects, often community members are brought in only to assist with data collection or to get buy-in for a researcher’s ideas. With MFH, for example, all surveys are codeveloped and co-analyzed with university and community partners. Journal articles are cowritten with community and university partners. We believe that the positive results of this study were directly due to the use of a CBPR approach, such as building on community strengths, equally involving all partners in all phases of research, promoting co-learning and empowerment, and distributing findings to all partners. This project has changed public awareness of research and researchers on the reservation, opening the door for other projects that use respectful and culturally competent research approaches.
Messengers developed out of an initial partnership between Alma McCormick, a Crow community member passionate about cancer education, and Suzanne Christopher, a researcher from Montana State University (MSU). Alma McCormick works on the project in the Crow community, and prior to funding for the project was involved in a state health department project aimed at increasing awareness and prevention of cancer among tribal members. Her interest for working in cancer education comes from her own experience of having had a child who lost a battle with cancer at a very early age. Suzanne Christopher has a background that instilled in her the principles of social justice. She believes that you do not go into communities and tell people what to do; instead, you ask people what they need and how we can work together. Alma recognized Suzanne’s gentle and humble nature and Suzanne recognized Alma’s passion and integrity, and together they formed the basis for the partnership that resulted in Messengers. The project developed further when Alma and other community members informed Suzanne of the need for cancer education and outreach on the Crow reservation, and Suzanne shared with Alma her interest in writing a collaborative grant for a cancer project with the Crow Nation. MFH developed as a result of more than 5 years of meetings between community and university partners (Christopher, Watts, McCormick, & Young, 2008).
EXPANSION OF THE PARTNERSHIP: BUILDING TRUST IN THE COMMUNITY
Although research is a basic component of eliminating health disparities, many tribal nations have had bad experiences with researchers and with the research process. Too often, research has been conducted on rather than with tribal communities, resulting in their being labeled or stereotyped (Christopher, 2005). Thus, trust is important when working with American Indian tribes who for good reason often have a high level of distrust for outsiders (Christopher, Watts, et al., 2008). The steps our project took to gain trust in the community are as follows: First, we recognized community history, including research that had already been conducted in the community. Second, the project would directly benefit the community. Third, the community and university partners would work together on all phases of the work. Fourth, we would keep the community informed on the progress of the project. Lastly, we would do all that we could to continue the program indefinitely. We matched our words with actions. For example, on the fourth point, we have open community meetings to talk about our work and have articles in the local tribal newspaper. On the second point, instead of doing what many researchers have done in the past—that is, collecting data and then disappearing—we collected data and used it to shape the community health intervention to improve the health of Crow tribal members. The data stays in the community for community benefit.
DEVELOPMENT OF THE INTERVENTION—MESSENGERS FOR HEALTH
The program began with community meetings in 1996 and received funding beginning in 2001. Members of the Crow Nation worked with MSU researchers to codevelop an outreach program that would be most effective to educate the Crow women. It was decided in the initial meetings that implementing a one-on-one educational approach would be most successful. This approach would use many of the cultural strengths already in the Crow community; for example, the important role of respected women and their tight-knit family networks. Community members provided direct guidance in the areas of assessment, development, and implementation of the outreach intervention. In addition, the educational materials, such as brochures, teaching tools, and videos, were developed cooperatively with community members and designed specific to the Crow culture. Community members serving as advisors to the project began to formally serve as Executive Board members for the project.
The composition of the Board consists of 7-11 members. The Board has primarily been composed of Crow tribal members, with a non-Indian health care provider from the IHS serving on the Board at various times. The role of the Board members is to review and provide guidance on all aspects of the program and assist with project oversight by monitoring the pulse of the program in the community. The need for the Board to provide this level of detailed assistance explains why the Board has met approximately once per month since 2001. At times when there is greater activity (e.g., development of videos), the Board meets more often. The Board is also a link with the greater Crow community, providing information about the project to the community and bringing community ideas and suggestions to the project.
THE EDUCATIONAL APPROACH
MFH developed as a CBPR project with the aims of increasing knowledge of, positive attitudes toward, and screening for cervical cancer among Crow women on the Crow reservation. A number of studies have also focused on increasing rates of screening for cervical cancer among Native Americans and have been successful. Several effective strategies from other projects have also been used in our intervention. LHAs provide information (Dignan et al., 1998) by distributing culturally relevant educational materials and providing reminder calls for appointments (Lanier, Kelly, & Holck, 1999). Our study focuses on cultural strengths, similar to other studies with Native Americans (Hodge, Fredericks, & Rodriguez, 1996; Strickland, Squeoch, & Chrisman, 1999). A holistic approach to wellness is used in our educational messages, similar to Strickland et al.’s (1999) recommendation of promoting screening as a part of wellness. In addition, as other studies have demonstrated, working in full partnership with community members provides opportunities to enhance knowledge and skills for all those from the community who are participating, as well as providing a foundation for future research within the community (Matsunaga et al., 1996).
As mentioned, the intervention uses LHAs or women who are viewed as natural helpers in the community, and who others turn to for support and advice (Eng, 1993; Eng, Parker, & Harlan, 1997). The lay health approach portrays how community members naturally relate to one another and matches research and theory on social support and social networks. Social support is defined as resources provided by other persons (Cohen & Syme, 1985). Research indicates that social support influences both emotional and physical health (Berkman, 1984, 1995; Reblin & Uchino, 2008). LHAs in the Messengers program provide information and support to community women from a trusted network member—which is vitally important, because surveys with Apsaalooke women found that they often do not trust health professionals at the IHS (Christopher, Gidley, Letiecq, Smith, & McCormick, 2008).
In the Crow culture, values and knowledge are passed down by examples in daily experiences and through stories shared orally. This method of learning matches concepts in social cognitive theory (SCT) (Bandura, 1998), also known as social learning theory (Baranowski, Perry, & Parcel, 2002), which is a part of this intervention. The main components of SCT in this intervention are observational learning, behavioral capability, and reinforcements. For example, observational learning states that people can be influenced by role models that they trust. In our intervention, the LHAs serve as trustworthy role models by receiving Pap screenings and thus influencing others to do the same. One strength of an LHA intervention is the ability to impact change at the intrapersonal, interpersonal, community, and policy level. It has been suggested that to sustain change in communities, health programs need to be developed at broader levels than just the individual (McLeroy, Bibeau, Steckler, & Glanz, 1988).
The educational intervention of the one-on-one approach is gentle and respectful, reflecting this important Crow cultural trait. The LHAs, or Messengers as they are called in the Messengers project, were recruited based on their qualities and following the recommendations of community members. The project currently supports 22 Messengers, and has supported up to 33. They represent the seven district areas of the reservation and receive training on health issues and cancer screenings. Messengers talk with other women in the community on a daily basis and encourage them to receive cancer screening examinations. The Project Coordinator facilitates one-on-one training, and guides, motivates, and empowers each Messenger. She provides opportunities for hands-on teaching, such as during educational outreach booths and in schools. As women observe and learn from her, they become confident that they are able to do the same. Most Messengers have no formal schooling in health or in education. Many have gone from not being able to speak comfortably in a public meeting to giving presentations in communities.
MESSENGERS IN ACTION
The project has facilitated opportunities for empowering Messengers to become leaders in the community. One Messenger stated that the success of the project has been a "way to empower, to take responsibility for our own health. [We are] taking responsibility, educating, and dispelling myths [about cancer]." Messengers have shared how they value their responsibilities as educators and leaders in their communities. One Messenger commented, "We are called into a leadership role for our community, [community members] look up to us."
The Messengers program provides support for the Messengers through an initial training session and monthly meetings. Messengers also receive a monthly stipend to partially compensate them for the time and energy they devote to the project. To document that Messengers are conducting outreach with at least 15 women per month, they submit an outreach log that includes the initials of the person with whom they conducted outreach, and the date and time of the meeting. The first group of Messengers participated in training sessions before they began their outreach. The training covered a description of the Messengers program, the qualifications, duties, and responsibilities of Messengers, a volunteer agreement, record keeping, one-on-one and group outreach, and understanding cancer, cervical health, and other important health issues. This training was evaluated and found to be successful in raising cancer awareness and knowledge (Watts, Christopher, Smith, & Knows His Gun McCormick, 2005). As the program continues and new Messengers join the project, they have an initial training session with the Project Coordinator. The Messengers and project staff come together each month to share with each other, and to keep up to date with current health issues. Often, a guest is invited to provide a brief overview of a health topic of interest. Guest speakers have included IHS providers who have talked about breast cancer, cervical cancer, and human papillomavirus (HPV). Other guest speakers have discussed nutrition, smoking cessation, colon cancer, drug abuse, and many other topics. Although the project is focused on cancer screening, community members approach Messengers for many other issues and so they are supported in this through educational efforts.
Some meetings focus on enhancing outreach strategies. Messengers share their own personal outreach barriers and experiences. Several Messengers have discussed the difficulty they have when some women refuse to get a Pap test, or to even talk about getting a Pap test. Other meetings have focused on gaining leadership skills. Messengers role-play to practice outreach strategies. Often, there is time for Messengers to meet in small groups to plan community meetings. We have lead Messengers who represent the various districts of the Crow reservation. Each lead Messenger is responsible for organizing group outreach in their district. The Messengers staff encourages lead Messengers to organize community meetings in their districts. District meetings also include guest speakers and are an avenue for reaching out to community women. Messengers also host district-wide community meetings in the summer, where cancer survivors share their stories and community women have fun playing educational games.
Having cancer survivors sharing their stories in public venues is a significant accomplishment of the program. Before this project, people with cancer suffered alone and in silence. Now, Messengers provide avenues for survivors to share their stories, thus providing hope, inspiration, and encouragement to the community.
As mentioned previously, Messengers use the strengths of the Crow culture. Messengers have the liberty to use whatever method they feel is best to reach women. For example, building on the strength of close-knit family ties, Messengers provide home visits to their extensive social networks. Many Messengers speak their native tongue and provide outreach in the community, effectively communicating in the Crow language. Through the education provided by Messengers, Crow women have become empowered to take care of their cervical health. Women now know the importance of receiving a Pap test and are approaching Messengers in public, requesting to be scheduled for Pap test and mammogram appointments.
Outreach occurs on a daily basis. As a Messenger strolls through the grocery store and is greeted by her friends, relatives, and coworkers, one or more of them is likely prompted to remember that they are due for their annual examination. "Hey, can you schedule me for a Pap?" is a question that Messengers are used to hearing, even in public places. Other Messengers are out and about in the community spreading awareness and are known for their persistent promotion of the importance of early detection. On the other hand, in some cases Messengers prefer to be less noticeable. The project provides business cards with the question, "Do I need a Pap test?" A Messenger can discreetly hand the card to a woman and get the conversation started.
When Crow women, young and old, get together, you will hear lots of talking and laughter. It is during this social time that the conversation may touch on the topic of sex, usually in a joking manner. Now the conversation has become a little more serious, because women are openly discussing such issues as sexually transmitted infections and risks for cervical cancer. Although modesty is an important trait among Crow women, it no longer keeps them from having a Pap test examination. Women know they can schedule an appointment with a female provider with whom they may feel more comfortable.
Recently, Messengers took the step of developing a much needed cancer support group for the Crow Nation. Community members stated that this was something that had been needed for a very long time and that we were in a position where the community was looking to this program to take this step. The trust developed with the community by means of the program has allowed this to occur.
