We don’t talk about cancer and we don’t talk about our bodies. It’s hard to find the right words. Sometimes we are embarrassed to talk about our body parts. Being embarrassed can be a matter of life or death. My Dad died of colon cancer. We need to talk about various health topics with family members and to educate one another.

—Community Health Worker

“What’s the Big Deal?” a 25-min colorectal cancer (CRC) Readers’ Theatre script was developed with and for Alaska Native and American Indian Community Health Workers (CHWs) and the people in their communities to increase CRC screening awareness, to support everyday conversations about CRC screening, and encourage wellness choices that include recommended CRC screening examinations. This paper describes the collaborative development of a Readers’ Theatre script and the ways it generated meaning among both readers and listeners.

CRC is the second leading cause of cancer death for Alaska Native people [1], yet it can be detected through colonoscopy screening and even prevented by finding and removing colon polyps before they become cancer. Alaska Native people have nearly twice the rate of CRC mortality and incidence as the U.S. White population. The age-adjusted CRC mortality rate (2000–2007) for men and women combined was 30.8 per 100,000 for Alaska Native people and 18.0 per 100,000 for U.S. Whites [2]. The age-adjusted CRC incidence rate (2004–2008) for Alaska Native men was 88.3 per 100,000 and for U.S. White men the rate was 52.1 per 100,000 [3]. The age-adjusted CRC incidence rate (2004–2008) for Alaska Native women was 87.3 per 100,000 and for U.S. White women the rate was 39.4 per 100,000 [3]. Having recommended CRC screenings, as suggested by the US Preventive Services Task Force [4], has the potential to contribute to the reduction of CRC incidence and mortality among Alaska Native people.

Background

What Is Readers’ Theatre?

Readers’ Theatre, within the context of this study, was the coming together of a group of adults to read aloud a written theatre script. Participants volunteered to actively participate as a listener or to read aloud a specific character of their choosing, regardless of gender or age. Through Readers’ Theatre, participants had an opportunity to read the voice and feel the emotion of a different gender, age, and life experience. People, reading their chosen roles, sat among the listeners in a circle. Both readers and listeners were given a copy of the script to read aloud or to follow along and listen. As participants read from their handheld script, words were adapted or changed to reflect their region, common expressions, and ways of speaking. Readers brought life to the characters by adding their own rhythm, intonation, and vocal patterns.

Readers’ Theatre as Storytelling

Readers’ Theatre builds upon the storytelling traditions of Alaska Native and American Indian people as a way to share CRC health messages. Wilson, an Indigenous researcher stated:

Stories are often used in Indigenous societies as a teaching tool. Stories allow listeners to draw their own conclusions and to gain life lessons from a more personal perspective. …stories allow us to see others’ life experiences through our own eyes [5].

Readers’ Theatre integrates oral tradition, language, and culture into a dynamic story that engages participants in an active process of reading and listening. Alaska’s CHWs expressed the importance of story as a “viable way of creating meaning and enhancing understanding” [6].

Readers’ Theatre as a Cancer Communication Tool

Readers’ Theatre has the potential to enhance adult health communication as participants are engaged in a conversational setting with specialized vocabulary, pronunciation, and meaning structures. CRC, the focal point of this Readers’ Theatre script, has its own unique language and vocabulary. Participants experienced the language of cancer as they listened to medical words being pronounced and meanings being expressed.

Methods

Grounded in the principals of Indigenous research methodologies, we share our collaborative process of developing, implementing, and evaluating a CRC Readers’ Theatre script. Vital to Indigenous research methodologies are culturally responsive practices that build relationships, foster critical conversations, and encourage self-determination and empowerment [5, 7, 8]. A paradigm shift is advocated for by Denzin et al. [7] to honor Indigenous methodologies.

It seeks models of human subject research that are not constrained by biomedical, positivist assumptions. It turns the academy and its classrooms into sacred spaces, sites where Indigenous and non Indigenous scholars interact, share experiences, take risks, explore alternative modes of interpretation and participate in a shared agenda, coming together in a spirit of hope, love, and shared community [7].

CHW input was central to the dynamic process of script development, implementation, and evaluation to create a meaningful CRC communication tool. Qualitative methods were used to gain further understanding of the helpfulness of Readers’ Theatre as a way to bridge CRC knowledge, conversations, and wellness choices among CHWs.

Script Development

Two concurrent approaches to script development were utilized during a 6-month period (October 2009–March 2010). An informal process of soliciting input from cancer survivors, their families and caregivers, medical providers, and CHWs broadened the depth and breadth of critical input. Additionally, CHWs as part of four cancer education workshops read, critiqued, and assisted with revisions of the script.

Approximately 20 people including cancer survivors, their families and caregivers, medical providers, and CHWs provided individual comment on the script as it was being written and revised. A snowball sampling approach was used, beginning with people the project coordinator knew; inviting them to recruit additional reviewers. The approach for receiving feedback from script collaborators included telephone conversations, in person meetings, and e-mail correspondence. This collaborative informal approach expanded the reach of people able to contribute to the effectiveness of script development. Reviewers shared their reflections of the script commenting upon the accuracy of medical information, the affective impact of the characters, script believability, language, and overall clarity of messages. The script provided an opportunity to name emotions and concerns that may remain silent when discussing CRC screening.

Additionally, as part of four cancer education workshops, 38 CHWs assisted with script development. Two cancer education workshops were held in Anchorage, Alaska—(1) eight females and two males; (2) eight females and one male. Two workshops were held outside Alaska to gain additional insight into the experiences of American Indian people—Seattle, Washington (nine females and one male) and Albuquerque, New Mexico (seven females and two males). Detailed notes were taken during the discussion by the project coordinator. Participants shared their CRC perspectives both verbally and in writing about screening barriers and support measures, attitudes or beliefs about CRC screening, and messages they wanted community members to know.

During these discussions CHWs reflected upon reasons people in their communities may not be having CRC screening, observing that some people may not be aware that there are screening tests for CRC, may lack accurate information about screening, or be fearful of being diagnosed with CRC. Many CHWs participating in the discussions echoed the following comment, “People don’t even know about the test. There’s not enough information on cancer.”

CHWs related several common misconceptions patients and community members had expressed about CRC screening, including the following comments:

  • Only men get colon cancer, so I don’t need the test.

  • I don’t have any family history of colon cancer, so I don’t need a colon checkup.

  • I don’t have any symptoms and feel good, so I don’t need to have a colon check. My doctor said if I start having rectal bleeding then we should do the test.

CHWs also noted that many people may feel embarrassed about the procedure, concerned over the cleansing prep they will do before the exam, or worry that the procedure may be painful or uncomfortable, as the following comments indicate:

  • Elders … they don’t talk about their bodies … [they are concerned about] what they have to go through … don’t know what’s going to happen to them.

  • People put it off for the longest time, sometimes years, because they have heard the prep is bad and the whole idea of colonoscopy freaks them out.

Additionally, CHWs talked about reasons people in their communities had chosen to have CRC screening, nodding in agreement with one CHW’s remark that, “Patients tell me they don’t really like it, but they will do it because they want to know if something is wrong or find out right away to get better.” Correspondingly, CHWs also related reasons they themselves chose to have CRC screening, as represented in these comments:

  • My health is important … I need to walk the talk.

  • Taking care of myself is like taking care of my community.

Throughout the development process, the script was shared with the people who offered suggestions. This method provided a way to affirm that comments were interpreted correctly and that the script resonated in realistic and culturally respectful ways. After the script was initially read, participants suggested that we add another character to support a conversation between men. This new addition was reported as a favorite part in a later reading. Participants’ ideas were woven into the characters’ actions or words. CHWs and medical providers wanted to emphasize that CRC screening is an important part of wellness for all people and not just adults with a family history of CRC. Consequently, Rita, a character in the play, suggested that her mother who has no family history of CRC have a screening examination along with her Dad, who has a family history of CRC. And in a surprise ending the mother, who had no symptoms, has colon polyps detected and removed.

Throughout the process, a professional playwright was consulted and assisted with character and plot development and served as the primary author of the script. The play evolved to include six characters that use humor and story to talk about common questions, concerns, barriers, feelings, and emotions related to CRC screening.

The Readers’ Theatre Script

“What’s the Big Deal?,” a 25-min CRC Readers’ Theatre script grew out of the stories and comments shared by cancer survivors, their families and caregivers, medical providers, and CHWs. Common CRC screening questions, concerns, and basic information were woven into the lives of six characters. The characters include Isaac, a man in his early 50s whose father died of colon cancer; his wife, Beverly who has recently turned 50 and has no family history of CRC, and their two children; Rita who is starting nursing school; and Freddie, her older brother. Additionally, the script includes Isaac’s brother, Uncle Ward, who Isaac learns has had colon screening and the health care provider who does the colonoscopy procedures. Role modeled within the script are family and friends discussing screening while engaged in common activities. Alaska Native cultural values of the importance of family, community, storytelling, and humor are woven into the fabric of the script [9].

The play begins with Isaac taking his daughter, Rita to nursing school:

  • RITA: Mom said you might forget.

  • ISAAC: What?

  • RITA: You were going to schedule a doctor’s appointment.

  • ISAAC: Oh, that. Sure, I’ll get around to it. But I have a lot to do and I’m only in town for a short time.

  • RITA: It’s important Dad.

  • ISAAC: I know.

  • NARRATOR: They sit in awkward silence for a moment.

  • RITA: You know a colonoscopy helps to prevent colorectal cancer.

  • ISAAC: Rita!

  • RITA: Everyone over age 50 should have one.

  • ISAAC: I don’t want to talk about this.

  • RITA: And Grandpa died of colon cancer so you really needed to begin colon screening at age 40 … which means you already waited 10 years too long.

  • ISAAC: There are some things a father just doesn’t talk about with his daughter.

  • RITA: Why not? I love you and your health is important to me. What happens to you matters to everyone in the family…

Script Implementation

Post-Reading Conversation

An important part of interactive Readers’ Theatre is a post-reading conversation. This is an informal open dialogue which honors readers and listeners unique perspectives. After reading the play and thanking both the readers and listeners for their active participation, people are invited to engage in a post-reading conversation. Guiding questions to begin a conversation include the following: How was it for you to be a reader or a listener? What do you think of Readers’ Theatre as a way to share colon health information? How does the experience of the characters compare to your experience? Participants were usually eager to engage in a lively dialogue about the play, choosing to speak from the comfort of the characters’ experience or telling their own story, often for the first time. Through this process of critically reflective dialogue participants had an opportunity to discover their voice of power, making audible their ideas and beliefs about ways to impact CRC incidence and mortality. The post-reading conversation may also serve as a rehearsal for future conversations as together participants explore their ideas about CRC prevention, risk reduction behaviors, and early detection.

Post-Readers’ Theatre Evaluation

During April 2010–March 2011, 94% (161/172) of participants from eight CHW cancer education workshops and three community presentations [10, 11] completed a post-reading written evaluation. Readers’ Theatre participants were asked to complete a two-page written evaluation of their experience. Open-ended questions complimented a checkbox format to better understand participants’ experience and to generate learner responses.

Results

Of the 161/172 Readers’ Theatre participants who completed a written evaluation, 86% (139) were female and 12% (20) were male. Self-identified ethnicity was as follows: 30% (49) Alaska Native, 47% (76) American Indian, 11% (17) Caucasian, 7% (12) Other, and 4% (7) blank. Age ranged as follows: 9% (15) 29 and younger, 24% (38) 30–39 years, 26% (42) 40–49 years, and 38% (62) 50 years and older. Half of the respondents reported knowing a person diagnosed with CRC. In response to “Have you had a colon screening exam?,” 33% (53) of all participants circled yes. Of those ages 50 and older, 61% (38) circled yes.

In response to the question, “Did you like this play?,” 98% (157/161) of respondents circled yes. People wrote ways they identified with the characters in the play, how the format of Readers’ Theatre supported their learning, and how Readers’ Theatre was culturally respectful.

  • It was so real and showed us how to deal with these situations. I liked it because it is a good story—very down to earth and a real way to present the issue.

  • It’s easy to read and puts important info into the context of normal everyday conversations.

  • I felt it was a fun way to get people to talk about this [colorectal cancer screening] in a non-embarrassing setting.

In response to the question, “Will you recommend this play?,” 96% (155/161) of participants circled yes, two circled no, one wrote undecided, and three were blank. Respondents could check multiple boxes to specify to whom they would recommend the play. Checkboxes were: co-workers (35%), family (29%), community (47%), clients (25%), youth (25%), and in the school (25%). Additionally, participants wrote other people that they would recommend the play to which included the naming of specific individuals and family members as well as tribal partners, friends, youth organizations, and community gatherings.

In response to the question, “After experiencing this play, do you feel more comfortable talking about colorectal cancer?,” 90% (145/161) of respondents circled yes, two respondents wrote they were already comfortable, two circled no, and ten wrote ambivalent words such as yes/no, somewhat but still reluctant. Only two evaluations were left blank. Representative comments are shared below.

  • Gives me a great idea to explain to friends/family/patients. It was very informative and put it in simple terms and gave me a reminder to talk to my family over 50.

  • This is a great tool to start a conversation—a very good idea because it is very hard for me to talk to our men.

  • The entire play was informational and showed how comfortable it can be talking to your family about this topic.

In response to the open-ended statement, “I learned…,” 59% (95/161) of participants described what they had personally gained by participating in a CRC Readers’ Theatre experience. Self-identified ways the script supported personal learning included: the importance of CRC screening (26%), cancer and screening facts (18%), how to talk with others (15%), and the importance of sharing this information and encouraging others (18%) to have recommended screenings. Representative participant comments follow:

  • I received information that was new to me about colon cancer, the test, and when to have the test. I didn’t know anything about it until today.

  • I was unaware of colorectal screening for women. I thought it was just for men as none of my doctor recommended or suggested I take it.

  • Now I know something about it so I won’t feel lost when it is brought up. I have family members at the age recommended so information learned in the play will be easier to communicate the importance.

In response to “After seeing this play, will you do anything differently in the way you take care of your health?,” 77% (124/161) of respondents wrote healthy changes they planned to make which included: getting screened (30%): “By the time I get home I’m hoping to have a date/time scheduled. I am 3 years overdue, due to fear”; supporting others to get screened (34%): “I already texted my husband to get a colon exam (both of us)”; sharing cancer information (35%): “Talk to more people about getting screened. Spread the word about screening”; being more physically active (42%): “Exercise into my daily routine-exercise daily times 30 minutes”; eating healthier (34%): “Eat fruits and vegetables”; and quitting tobacco (6%): “Quit smoking!”

Participants wrote how the experience of Readers’ Theatre supported their learning by actively involving them in a collaborative process. Readers’ Theatre as engagement supported an educational practice which moved beyond rote memorization of predetermined content which Freire [12] referred to as “banking education” in which learners are passive recipients of knowledge to empowering participants to be actively involved in their learning process. Participants noted:

  • The fellowship of the play brought people together. It opens your mind to new ideas.

  • It felt natural-like a natural conversation. It’s very informational and at the same time very understanding, in a way everybody can relate.

  • Like the interactive piece of a partner play rather than a movie that gets out of date and is hard to change. It gets many involved—if I am involved I learn better.

  • A wonderful tool that gives great info in a safe, fun interactive way. It was a great way to lighten the mood on such a serious topic.

Discussion

Participants eagerly embraced this CRC Readers’ Theatre as a cancer communication tool. “What’s the Big Deal?” Readers’ Theatre provided a tangible reference to talk about; something to interpret and critique; a way to engage participants both intellectually and emotionally which stimulated thought and discussion. In the post-reading dialogue, participants could choose to speak from the comfort of the characters in the script or share their own heartfelt messages. The sharing of scripted stories prompted the telling of additional stories, often for the first time, which acknowledged adult learners’ prior experiences and understandings. Readers’ Theatre created a comfortable, supportive environment of trust for adult learners to ask questions and discuss concerns, making learning relevant and meaningful. As reported by participants, Readers’ Theatre increased their knowledge, comfort talking about CRC, and appeared to serve as a catalyst for positive intent to change behavior. The power of Readers’ Theatre as an innovative health communication tool lies in its ability to connect with people both affectively and cognitively, to share information in culturally respectful ways, to offer diverse perspectives, to actively engage participants in cancer-related conversations, and to serve as a springboard for action. Participants requested additional scripts on a variety of challenging topics, to open the door for dialogue by giving people words to talk about difficult topics in a safe, non-threatening way. In the words of Readers’ Theatre participants: “It gave us a new way to talk with patients and family. It’s not embarrassing anymore.”

Using Readers’ Theatre as an innovative cancer education tool presents an opportunity for additional research in collaboration with diverse learners in a variety of settings. In the future, we hope to listen and learn from Readers’ Theatre participants to discover their experience over time. A CHW shared the following story:

After being a part of the play, I went home and both my parents were past due for their screenings. My dad was just like the character in the play. So I thought about the play and remembered how Rita encouraged her mom to have screening to support her Dad. The play gave me an idea about a way to talk with my parents. It worked. The play helped me talk to my parents. They both just had their screening exams. They both had polyps removed. I’m just waiting for their biopsy results. In an updated e-mail, Results were good, they are happy and I’m happy too.