Cancer Education for High School Students in the Northwest Arctic Increases Knowledge and Inspires Intent to Share Information and Reduce Cancer Risk

Abstract

Culturally appropriate cancer education is an opportunity to reduce health inequities in cancer. This manuscript describes the outcomes of piloting cancer education for youth in the Northwest Arctic region of Alaska. The project began due to community concerns, was focused through sharing circles conducted in the region, and was guided by a community advisory board. The project was based on the principles of Community Based Participatory Action Research (CBPAR), honored Indigenous Ways of Knowing, and was grounded in Empowerment Theory. In response to community requests, eleven cancer education lessons were developed for young people in the Northwest Arctic. Several lessons were piloted in spring 2022. Each participant was invited to complete a pre-lesson and a post-lesson survey. A total of 113 surveys were completed from five different lessons: 66 pre-lesson surveys and 47 post-lesson surveys. Respondents’ mean cancer knowledge scores were significantly higher after the Cancer Basics lesson. On 98% of post-lesson surveys, respondents said they planned to share cancer education messages such as staying tobacco-free and increasing physical activity with others, including their family, friends, and community members. On 93% of the post-lesson surveys, respondents indicated they planned to make changes to reduce their own personal cancer risk, including by staying tobacco-free, eating healthier, and increasing physical activity. “Cancer is serious, and something we should start talking about”.

Background

Cancer is the leading cause of death in Alaska, with disproportionate burdens impacting Alaska Native people [1. ]. Alaska Native cancer mortality rates were more than 60% higher than those of White Alaskans in 2020 [2. ]. Deaths from cancer in rural Alaska represent not only an unnecessary loss of human life but also a loss of Alaska Native knowledge keepers who are vital in passing culture from one generation to the next. This holds true for the Northwest Arctic region of Alaska, where cancer mortality rates for Alaska Native people were 181.9 in 2013–2017 compared with 129.9 for all White Alaskans statewide in 2017 [2. , 3. ].

However, cancer mortality rates are not intractable; they have generally declined in Alaska for both the White and Alaska Native populations over the past 20 years [2. ]. Further, the leading causes of cancer incidence among Alaska Native people (colorectal, lung, and breast) all have modifiable risk factors, which presents an opportunity for health promotion efforts to reduce cancer risk [1. , 4. ]. Alaska Native people suffer disproportionately from risk factors that increase cancer risk: in 2020, 36.3% of Alaska Native/American Indian adults in Alaska reported being current smokers (compared with 14.7% of non-Hispanic White adults in Alaska) [5. ]. Similarly, 36.1% of Alaska Native/American Indian adults in Alaska reported a Body Mass Index (BMI) categorized as obese, as compared to 29.4% of White adults in AK [5. ].

Culturally relevant health promotion efforts have the potential to reduce both cancer risk factors and alleviate disparities impacting Alaska Native people. Previous culturally relevant health promotion efforts developed with and for Alaska Native people have led to self-reported decreases in cancer risk factors and improved self-efficacy to share cancer-related health information [6. , 7. ]. In part due to health promotion efforts, the percentage of Alaska Native adults who reported receiving a breast, cervical, or colorectal cancer screening has attained parity with rates for both Alaska White adults and US White adults [5. ]. However, there is still work to be done. Health promotion that supports individuals to be physically active, receive recommended cancer screening exams, stay tobacco- and alcohol-free, and maintain a healthy weight are critical needs to reduce cancer disparities and realize a future where Alaska Native people live longer, healthier lives.

A project team member from the Institute of Social and Economic Research at the University of Alaska Anchorage had previously been involved in studies in the Northwest Arctic on subsistence and climate change, and heard repeated concerns from community members about cancer. In response, an individual with expertise in cancer education was recruited from the same institute, and the duo facilitated sharing circles in November 2019 in the Northwest Arctic to investigate concerns, seek out ways to help address concerns, and, if relevant, identify the community’s priority areas for cancer education. The sharing circles specifically recruited high school students, community members, high school teachers and school staff, and health professionals. Hosting sharing circles with participating communities laid the foundation for cancer education to incorporate culturally relevant content, cultural values, and Indigenous knowledge to promote cancer prevention and control.

Sharing circle participants enthusiastically encouraged the development of cancer education for young people, and several individuals indicated their interest in participating on a community advisory board (CAB). Sharing circle participants identified a need for online cancer education that addressed topics such as mitigating cancer risk factors by reducing tobacco use, eating healthy, being physically active, vaccination against HPV, and receiving screening exams. Additionally, sharing circle respondents asked for a website with short audiovisuals and activities that could be used in classroom settings. Participants also asked for information on local cancer statistics and requested that information be shared both visually and through story. These findings resonated with previous research in distance delivered cancer education with Alaska Native people, where cancer education learners have requested learning through stories and visuals as well as through interactivity and local statistics [8. , 9. ]. Further description of the sharing circle process and findings are documented elsewhere [10. ].

The COVID-19 pandemic began shortly after the sharing circles were conducted, which led to a dramatic decrease in cancer screenings in the USA and may lead to increases in cancer mortality [11. ]. Alaska Native people suffered disproportionate mortality from the COVID-19 pandemic [12. ]. These issues heighten the need to increase cancer prevention measures in rural Alaska, which this project contributes to.

Theoretical Framework

This project was guided by principles of Community Based Participatory Action Research (CBPAR) that honors Indigenous Ways of Knowing [13. ]. The project process and curricula were grounded in Empowerment Theory [14. ] and designed to provide culturally respectful education that empowered individuals and inspired wellness activities. This work was also conducted in alignment with a proposed framework for creating culturally relevant online cancer education developed from work with Alaska’s Community Health Aides and Community Health Practitioners (CHA/Ps) [8. ].

As a CBPAR approach, sharing circles were conducted as a first step in developing a cancer education program focused on empowering individuals to change behavior and shift social norms to reduce cancer risk and control cancer in the Northwest Arctic. The project was reviewed by the Universit of Alaska Anchorage Institutional Review Board (#1416366) and Maniilaq Association, the tribal nonprofit corporation in the Northwest Arctic that manages health, tribal, and traditional assistance programs, as well as social services for the region. Review and approval from tribal entities was also sought prior to the project.

CBPAR is a partnership between communities and academics/researchers that focuses on locally relevant issues, builds on community strengths, and realizes social change to reduce inequities [15. , 16. ]. This framework guided the collaboration of the project team. In alignment with the CBPAR principles to “promote co-learning and capacity building” and conduct work in “collaborative, equitable partnerships,” the project team recruited a community advisory board to guide the project [17. ]. Indigenous ways of knowing, while diverse and heterogeneous, often include incorporating affective and subjective elements, and learning within the context of relationships, observations, and experiences” [18. , 19. ]. Consequently, this project sought both to create lesson plans that aligned with these ways of knowing and to build relationships with community members and potential collaborators.

Empowerment theories are both a foundation of CBPAR and a natural extension. Paulo Freire’s Popular Education is a theoretical root of CBPAR and advocates for empowering education that leads to social transformation, an idea identified as an effective health education strategy [20. ]. Empowerment-oriented approaches are also fundamental in working with Indigenous communities. Historical trauma linked to the colonization of Indigenous peoples has disrupted traditional food systems and cultural practices that facilitated physical activity, healthy eating, and limited tobacco use, which is linked by some Indigenous researchers to contemporary cancer disparities [21. ]. Acknowledging historical trauma and its impacts, CBPAR theorists advocate that work with Indigenous communities focus on self-determination and empowerment [22. ], an approach actualized by this project’s focus on cultural relevancy and cultural strength. Intertwined with self-determination, empowerment is a contextual, participatory process that advances social justice and redistributes power to increase control [14. ]. Empowerment-oriented approaches are designed to:

“…enhance wellness while they also aim to ameliorate problems, provide opportunities for participants to develop knowledge and skills, and engage professionals as collaborators instead of as authoritative experts.” [14. ]

Empowerment Theory is a framework that guides these approaches, and CBPAR “exemplifies empowering processes,” including working with the community and building capacity [23. ]. Youth are uniquely situated to empower health behavior change due to their potential to live positive health behaviors and role model that behavior as future leaders and elders of the next generations.

Based on work with Alaska’s Community Health Aides and Practitioners, a proposed framework for culturally relevant online cancer education with and for Alaska Native people was proposed in 2018. This framework included four central constructs; (1) collaborating with potential learners and community members to develop and refine education, (2) deliver content in relevant ways, such as through personal stories and visuals, (3), contextualize content to learners’ unique experiences and cultures, (4) allow space for relationship building and connections to allow individuals to learn from/with each other [8. ]. This work began with relationship building and collaboration with potential learners, with findings affirming the importance of story and visuals in the lessons. Partnership with key stakeholders allowed curricula to also incorporate visuals, stories, and language from the region in the curriculum.

Methods

The CAB guided project progress as 11 cancer education lessons were developed and made available online at https://sites.google.com/view/akcancer/. The 11 cancer education lessons were 1) what is cancer?, 2) cancer diagnosis and treatment, 3) cancer and the environment, 4) physical activity, 5) healthy eating, 6) choosing tobacco-free, 7) alcohol and cancer risk, 8) sun health, 9) HPV, 10) screening exams, and 11) Northwest Arctic cancer data.

The research team had planned to return to each participating community to conduct digital storytelling workshops and develop a sustainability plan. However, the COVID-19 pandemic prevented travel. Consequently, the researchers and CAB adjusted to reach out to young people through social media, convene virtual CAB meetings, refine the lessons, translate key messages into the local language of Inupiaq, guest instruct cancer education online, etc. These approaches were well received but generated little pilot data. When case rates began to drop and vaccination rates increased, travel restrictions were lifted and a member of the project team went to the region. This travel inspired local action; a community advisory board member who taught an “educators rising” course designed for students interested in becoming teachers assigned his students to instruct the cancer education lessons to middle and high school students. The research team member assisted these eight student teachers, ensured learners were invited to complete pre- and post-lesson surveys, and gave a school-wide presentation.

Learners

The Northwest Arctic region of Alaska is home to approximately 7500 people, about 80% of whom are Alaska Native or American Indian [24. ]. The region is not connected via road to any urban centers (see Fig. 1), and the largest community in the region is estimated to have just over 3000 people.

Fig. 1.

Northwest Arctic borough in Alaska

Lessons

Substantial work has been undertaken in previous projects to learn how to create culturally relevant, distance-delivered, cancer education [13. ]. This line of research has resulted in the development of a framework for developing culturally relevant cancer education, including four domains: (1) collaborating, (2) content, (3) contextualizing, and (4) connecting [8. ]. The development of this curriculum was undertaken in alignment with that framework through collaborating with community members and the community advisory board, delivering content through visuals and activities, contextualizing content with learners’ communities and local information, and creating space within the lessons to allow for students to interact with one another.

The project team developed a website with eleven different cancer-related topics. The website included a page on each topic with a visual or audiovisual element, basic information, and links to lesson plans with classroom activities. Anyone can access the lessons free of charge at https://sites.google.com/view/akcancer. The lesson plans and website were also included as part of the Northwest Arctic Borough School District Curriculum, allowing teachers in the district easy access to the materials as well as district support to instruct the lessons.

To create each lesson plan, a project team member drafted an outline in Microsoft Word that included objectives, materials needed, resources, relevant vocabulary, printable activities such as role plays or crosswords, and links to relevant audiovisuals housed on the website as well as an outline to guide instruction and student homework. The draft was then reviewed by content experts and/or other members of the project team as well as shared with the community advisory board, and iteratively edited. Once a draft was finalized, then another project team member added references to relevant Alaska Curriculum Standards. The lesson plan was then uploaded onto the website, with key themes incorporated into a page of the website to increase accessibility of content.

Measures

To assess the impact of the cancer education lessons, both a pre-lesson survey and a post-lesson survey were developed for each lesson. Each pre/post survey included knowledge-based questions as well as prompts on demographic information. Each post-survey also included measures of empowerment outcomes, respondents’ intent to share cancer information, and change behavior as a result of the lessons, as well as self-assessment of changes in comfort to talk about cancer, confidence to talk about cancer, cancer-related knowledge, and preparation to talk about cancer. Post-surveys also included questions on what respondents liked about the lessons and what could be done to improve them. Pre- and post-lesson surveys were collected in Qualtrics, downloaded in May 2022 and then cleaned and summarized in Microsoft Excel. Two-sample t-tests were run on the average of correct answers of knowledge-based questions to assess pre- to post-lesson changes. All pre- and post-lesson surveys are available on the cancer education website located at: https://sites.google.com/view/akcancer. Students were offered a $10 gift card for completing each pre- or post-lesson survey.

Funding and IRB Review

This work was funded by the Alaska Native/American Indian Clinical and Translational Research Program, supported by the National Institute of General Medical Sciences of the National Institutes of Health under Award Number U54GM115371, as well as the Alaska IDeA Network of Biomedical Research Excellence (INBRE), funded by the National Institutes of General Medical Sciences of the National Institutes of Health under Award Number P20GM103395. The project was reviewed by the University of Alaska Anchorage Institutional Review Board (#1416366-8) and Maniilaq Association, the tribal nonprofit corporation in the Northwest Arctic that manages health, tribal, and traditional assistance programs as well as social services for the region.

Results

Learners

Surveys were completed for six of the developed cancer education lessons. A total of 124 evaluation surveys were started, and 113 were completed. Participants were asked to enter an email to receive an electronic gift card on each of the surveys. No emails were entered on 50 surveys, and a total of 43 unique emails were entered on the remaining 74 surveys. During the cancer education week, 45 unique individuals received gift cards for completing surveys, while additional survey completers may not have requested gift cards. The research team member also gave a school-wide presentation where pre-/post-lesson surveys were not administered, although an estimated 200 students attended the presentation. The majority of surveys were completed by Alaska Native respondents (88%) and by students in middle or high school (88%). Some survey respondents also identified as teachers/school staff, college students, and community members. Demographics are summarized in Table 1.

Table 1.

Demographic characteristics of survey respondents

	Completed surveys N (%)
Total	113 (100%)
Gender
Female	70 (62%)
Male	38 (34%)
Blank/prefer not to say	5 (4%)
Race*
Alaska Native	99 (88%)
White	22 (19%)
Black	5 (4%)
Age
14 or younger	15 (13%)
15–17	68 (60%)
18–19	19 (17%)
20 or older	9 (8%)
Education
Middle or high school student	99 (88%)
Other	12 (11%)

*Respondents were able to check more than one race, so total exceeds 100%.

Changes in Knowledge

Each student was invited to take a pre-lesson survey at the beginning of a lesson as well as a post-lesson survey at the end of a lesson. Correct answers to content knowledge items are shown in Table 2. On the two lessons where there were at least five completed pre-surveys and five completed post-surveys, a two-sample t-test was used to determine statistical significance.

Table 2.

Respondent changes in cancer knowledge

	Pre-surveys	Post-surveys	P-value*
Cancer basics
Number of completed surveys	39	25
Number of knowledge Questions	12	12
Mean	8.3	9.9	0.043**
Healthy eating
Number of completed surveys	27	15
Number of knowledge Questions	10	10
Mean	5.7	6.0	0.626
Sun exposure
Number of completed surveys	3	5
Number of knowledge Questions	10	10
Mean	8.3	9.4	n/a
NW Arctic cancer data
Number of completed surveys	1	3
Number of knowledge Questions	9	9
Mean	0	4.3	n/a
Tobacco
Number of completed surveys	2	0
Number of knowledge Questions	12	12
Mean	1	-	n/a

*Two-sample two-tailed t-test assuming unequal variance

**p < 0.05

Statistical significance tests were not done if there were less than five pre- or post-surveys

The mean quiz score on the post-survey for the Cancer Basics lesson was statistically significantly higher than the mean quiz score on the pre-survey, with a p-value of 0.043. This lesson also had the most completed surveys and 12 knowledge questions. Except for the tobacco lesson where there were no post quiz surveys completed, the other lessons all had a positive trend of higher post-quiz means when compared with pre-quiz means.

Changes in Comfort, Confidence, and Knowledge

Post-lesson survey respondents were invited to indicate whether they felt “less,” “the same,” “more,” or “much more” comfortable talking about cancer, prepared to talk about cancer, confident to talk about cancer, or knowledgeable about cancer. Respondents indicated on 86% of completed post-lesson surveys that they felt either “more” or “much more” knowledgeable about cancer. A total of 57% of post-lesson surveys indicated that respondents felt “more” or “much more” comfortable talking about cancer, while 52% felt “more” or “much more” prepared to talk about cancer and 36% felt “more” or “much more” confident to talk about cancer.

Intent to Share Cancer Information

On the post-lesson surveys, respondents were asked whether they intended to share information learned during the lessons, what information they planned to share, and who they planned to share information with. On 98% of the post-lesson surveys, respondents said they planned to share cancer education messages, including with their family (68% of post-surveys), friends (48%), community members (20%), teachers (16%), and others (11%).

Respondents said they planned to share cancer-related messages including to stay tobacco-free (on 66% of the surveys), to eat healthier (64%), to increase physical activity (55%), to schedule recommended cancer screening exams (36%), and to stop tobacco use (34%) (see Table 3).

Table 3.

Cancer prevention messages respondents intended to share

	Post surveys* N (%)
Staying tobacco-free	29 (66%)
Eat healthier	28 (64%)
Increase physical activity	24 (55%)
Get information about having a recommended screening exam	17 (39%)
Schedule a recommended screening exam	16 (36%)
Get screened	15 (34%)
Stop using tobacco	15 (34%)
Cut down on tobacco use	12 (27%)
Having the HPV vaccine as recommended	3 (7%)
No change	1 (2%)
Total	44 (100%)

*Respondents were able to check more than one message they planned to share, so totals exceed 100%

There were an additional 22 write-in comments on cancer education messages that respondents planned to share, mostly messages of cancer prevention (14 of the write-in comments), such as this message one respondent planned to shared: “That cancer is preventable and that you are not going to die when you are diagnosed with cancer.”

Intent to Change Behavior

Post-survey respondents were asked if the cancer education would make a difference in the ways they took care of themselves. On 93% of the surveys, respondents indicated they planned to make changes to reduce their own personal cancer risk, as shown in Table 4.

Table 4.

Respondent intent to reduce personal cancer risk as a result of the cancer education

	Completed post surveys* N (%)
Increase physical activity	31 (70%)
Eat healthier	28 (64%)
Stay tobacco-free	17 (39%)
Get information about having a recommended screening exam	10 (23%)
Schedule a recommended screening exam	8 (18%)
Get screened	7 (16%)
Stop using tobacco	6 (14%)
Cut down on tobacco use	5 (11%)
Not make any changes	3 (7%)
Total	44 (100%)

*Respondents were able to check more than one intended behavior, so total exceeds 100%

Learner Suggestions

On the post-lesson surveys, learners were asked “We are working to make this cancer education the best it can be—Please help us by sharing ways to make this cancer education lesson better.” In response, there were 11 write-in comments, with most suggesting that the lessons were good as is or that the team could develop more content including “more information on different types of cancer.”

Learners were also asked “Is there anything else you think we should know as we develop cancer education for youth in the Northwest Arctic?” There were 10 write-in comments in response, including five suggesting that the project team members teach the lessons more frequently or in more communities. For example, one learner wrote: “Send instructors when COVID calms down, to villages to talk about the causes and results of cancer to put an image in the younger audience on how to be healthy and be aware.”

Discussion

While the lessons were well received and survey results were positive, the challenges in teaching the developed lesson plans while the research team could not travel due to COVID-related travel restrictions highlighted the need for the research team to continue an in-person relationship with key stakeholders in order to facilitate project sustainability. During the COVID-19 pandemic, the project team and community advisory board attempted several pivots in order to continue the project and reach the intended audience of young people in the Northwest Arctic. The team attempted a social media campaign, recruiting young people from the region to kickstart a weekly conversation on ways to reduce cancer risk, with prize winners drawn each week. However, this strategy received very few participants. The project team reached out to teachers in the region to offer to teach lessons remotely over Zoom or another platform, or to mail printed lessons to teachers to put in students’ take-home packets. However, with schools closed, high teacher turnover, and limited Internet capacity for many families in the region, this strategy also met with limited success.

When travel restrictions were lifted, a member of the project team traveled to the hub community and her presence was enough to inspire a local cancer week. The flurry of activity involved in that week included students peer-instructing the lessons at the middle high school as well as a school-wide presentation given by the research team member. The activities were well received and may be an option to continue in future years. However, the students who instructed the lessons created PowerPoint presentations out of each webpage instead of following the written lesson plans. This may indicate needs to instruct the lessons in person until key individuals are familiar with the interactive style of education. In response, the project team also created PowerPoint slide decks for each lesson plan in order to meet students/teachers where they are in their expectations for what a classroom lesson should look like.

Continuing to be responsive to community members who reach out for information, engage with key stakeholders, and foster relationships remains a challenge given the distance between project team members in Anchorage and communities in the Northwest Arctic. As a community member had said in one of the sharing circles in November 2019: “Come back to visit—just one visit, we’ll nod and agree with everything, come up several times and we’ll know you’re serious.” In addition to existing challenges caused by geographic distance, the global COVID-19 pandemic made anticipated in-person meetings an impossibility, transitioning all community advisory board meetings to online only despite sometimes limited bandwidth in rural AK. Additionally, while some of the cancer education lessons were instructed by the project team members remotely, the majority of the lessons were not evaluated until the April 2022 in-person cancer week. Local enthusiasm for the topic continued even during the COVID-19 pandemic. However, the presence of members of the research team may be necessary for the lessons to be taught until local individuals feel comfortable instructing the lessons on their own.

Limitations

While positive, the small sample number of completed pre- and post-lesson surveys did not allow for statistical analysis of changes in knowledge for most lessons. Further, the self-reported measures of intent to reduce personal cancer risk and share information may not be borne out by realized behavior change. The way the lessons were adapted and instructed by student teachers was also not uniform, and the lessons may be more or less effective if delivered in their intended format.

Conclusion

The cancer education pilot demonstrated the potential of the lesson plans to significantly change learners’ cancer-related knowledge and inspire intent to reduce personal cancer risk and share information about cancer. While these intentions may not lead to realized behavior change, a follow-up study of other cancer education participants found that all those who had intended to reduce their personal cancer risk behaviors reported they had done at least one of the behaviors they had intended up to 28 months after a cancer education course had been completed [25. ]. That study further found that all those who had intended to share cancer information ended up doing so although they were more likely to have shared with their family than with their friends or community members [25. ]. These findings suggest that the youth who intend to share information and reduce their personal cancer risk may well realize those behaviors.

This pilot project is a promising step in developing sustainable cancer education with and for Alaska Native young people in the Northwest Arctic region of Alaska. This project was undertaken in alignment with the proposed framework for culturally relevant online cancer education, guided by the principles of CBPAR, informed by Empowerment Theory, and honored Indigenous ways of knowing. This cancer education project is another step in the journey to promote wellness with and for residents in the Northwest Arctic region of Alaska by empowering youth and inspiring positive behavior change among young people, their families, and their communities to both reduce cancer risk and support those who face cancer. The cancer education lessons have helped to inform young people that there are ways to reduce cancer in their region. As a young person shared:

“There are ways to reduce your chances of getting cancer in the future.”

“Stay as healthy as you can, it is worth staying healthy.”

Data Availability

Contact the corresponding author for aggregated data.