Culturally Relevant Online Cancer Education Supports Tribal Primary Care Providers to Reduce Their Cancer Risk and Share Information About Cancer.

BACKGROUND: Culturally relevant education is an opportunity to reduce health disparities, and online learning is an emerging avenue for health promotion. In 2014-2019, a team based at the Alaska Native Tribal Health Consortium developed, implemented, and evaluated culturally relevant online cancer education modules with, and for, Alaska's tribal primary care providers. The project was guided by Indigenous Ways of Knowing and the principles of community-based participatory action research and was evaluated in alignment with empowerment theory. About 265 unique learners completed 1,898 end-of-module evaluation surveys between March 2015 and August 2019, and 13 people completed a follow-up survey up to 28 months post module completion. KEY FINDINGS: Learners described the modules as culturally respectful and informative and reported feeling more knowledgeable and comfortable talking about cancer as a result of the modules. About 98% of the learners planned to reduce their cancer risk because of the modules, and all follow-up survey respondents had reduced their risk, including by quitting smoking, getting screened for cancer, eating healthier, and exercising more. About 98% of the learners planned to share information with their patients, families, friends, and community members because of the modules, with all follow-up survey respondents indicating that they had shared information about cancer from the modules. IMPLICATIONS FOR PRACTICE AND FURTHER RESEARCH: Culturally relevant online modules have the capacity for positive behavioral change and relatively high correlations between intent and behavior change. Future research could determine which aspects of the modules catalyzed reduced cancer risk and increased dissemination of cancer information.

An Evaluation of Cancer Education Webinars in Alaska.

Culturally relevant health promotion is an opportunity to reduce health inequities in the cancer burden, and online learning is an emerging avenue for health promotion. To address a desire for synchronous online cancer education, a project team offered ten 1-hr cancer education webinars for Alaska's rural tribal health workers. The project was guided by the framework of Community-Based Participatory Action Research, honored Indigenous Ways of Knowing, and was informed by Empowerment Theory. The evaluation of this community-based intervention included end-of-webinar surveys. Between February and April 2018, 41 surveys were completed by 11 unique participants. All participants reported that, as a result of the webinars, they planned both to change their own behavior to reduce cancer risk, and to talk with their patients more often about cancer prevention strategies such as screenings, physical activity, tobacco cessation, and eating healthy. While the webinars addressed desires for synchronous actions to support cancer learning, and led to intentions to positive change behaviors, the ten webinars engaged far fewer unique learners than the team's asynchronous cancer education modules. This experience may inform other cancer educators' efforts to develop, implement, and evaluate online learning opportunities. Despite the small numbers, these webinars resulted in increased learners' intent to reduce cancer risk behaviors, share cancer information, and improved learners' capacity to talk about cancer in their communities.

A Framework for Culturally Relevant Online Learning: Lessons from Alaska's Tribal Health Workers.

Culturally relevant health promotion is an opportunity to reduce health inequities in diseases with modifiable risks, such as cancer. Alaska Native people bear a disproportionate cancer burden, and Alaska's rural tribal health workers consequently requested cancer education accessible online. In response, the Alaska Native Tribal Health Consortium cancer education team sought to create a framework for culturally relevant online learning to inform the creation of distance-delivered cancer education. Guided by the principles of community-based participatory action research and grounded in empowerment theory, the project team conducted a focus group with 10 Alaska Native education experts, 12 culturally diverse key informant interviews, a key stakeholder survey of 62 Alaska Native tribal health workers and their instructors/supervisors, and a literature review on distance-delivered education with Alaska Native or American Indian people. Qualitative findings were analyzed in Atlas.ti, with common themes presented in this article as a framework for culturally relevant online education. This proposed framework includes four principles: collaborative development, interactive content delivery, contextualizing learning, and creating connection. As an Alaskan tribal health worker shared "we're all in this together. All about conversations, relationships. Always learn from you/with you, together what we know and understand from the center of our experience, our ways of knowing, being, caring." The proposed framework has been applied to support cancer education and promote cancer control with Alaska Native people and has motivated health behavior change to reduce cancer risk. This framework may be adaptable to other populations to guide effective and culturally relevant online interventions.

Culturally-Relevant Online Education Improves Health Workers' Capacity and Intent to Address Cancer.

To address a desire for timely, medically-accurate cancer education in rural Alaska, ten culturally-relevant online learning modules were developed, implemented, and evaluated with, and for, Alaska's Community Health Aides/Practitioners (CHA/Ps). The project was guided by the framework of Community-Based Participatory Action Research, honored Indigenous Ways of Knowing, and was informed by Empowerment Theory. Each learner was invited to complete an end-of-module evaluation survey. The survey asked about changes in intent to share cancer information with patients as a result of the module. In 1 year, August 1, 2016-July 31, 2017, 459 surveys were completed by 79 CHA/Ps. CHA/Ps reported that, because of the modules, they felt more knowledgeable about cancer, and more comfortable, confident, and prepared to talk about cancer with their patients, families, and communities. All learners shared that because of the modules, they intended to talk with their patients more often about cancer screenings, tobacco cessation, physical activity, or nutrition. These findings suggest that the application of this collaboratively developed, culturally-relevant, health promotion intervention has supported increased CHA/P capacity and intent to interact with patients about cancer. In the words of a learner: "Doing all these courses makes me a ton times more comfortable in talking about cancer with anyone. I didn't know too much about it at first but now I know a whole lot. Thank you".

Culturally-Relevant Online Cancer Education Modules Empower Alaska's Community Health Aides/Practitioners to Disseminate Cancer Information and Reduce Cancer Risk.

To address a desire for timely, medically accurate cancer education in rural Alaska, ten culturally relevant online learning modules were developed with, and for, Alaska's Community Health Aides/Practitioners (CHA/Ps). The project was guided by the framework of Community-Based Participatory Action Research, honored Indigenous Ways of Knowing, and was informed by Empowerment Theory. A total of 428 end-of-module evaluation surveys were completed by 89 unique Alaska CHA/Ps between January and December 2016. CHA/Ps shared that as a result of completing the modules, they were empowered to share cancer information with their patients, families, friends, and communities, as well as engage in cancer risk reduction behaviors such as eating healthier, getting cancer screenings, exercising more, and quitting tobacco. CHA/Ps also reported the modules were informative and respectful of their diverse cultures. These results from end-of-module evaluation surveys suggest that the collaboratively developed, culturally relevant, online cancer education modules have empowered CHA/Ps to reduce cancer risk and disseminate cancer information. "brought me to tears couple of times, and I think it will help in destroying the silence that surrounds cancer".

Co-Creating a Culturally Responsive Distance Education Cancer Course with, and for, Alaska's Community Health Workers: Motivations from a Survey of Key Stakeholders.

To gain input on a proposed culturally responsive, distance-delivered cancer education course informed by empowerment theory and adult-learning principles, Alaska's Community Health Aides/Practitioners (CHA/Ps) and CHA/P leadership were invited to take an online survey in February 2015. The proposed course will be developed as part of the "Distance Education to Engage Alaskan Community Health Aides in Cancer Control" project. The results of the survey demonstrate that respondents are both interested in taking the proposed class and engaging in course development. The results also indicate that respondents have the technological comfort and capacity to be engaged in online learning and have primarily positive experiences and perceptions of distance education. This survey is the beginning of the interactive development of the online cancer education course and part of a continuing endeavor to promote wellness with, and for, Alaska's people by empowering Alaska's CHA/Ps and inspiring positive behavioral change to both prevent cancer and support those who feel its burdens.

Promoting Culturally Respectful Cancer Education Through Digital Storytelling.

Cancer is the leading cause of mortality among Alaska Native people. Over half of Alaska Native people live in rural communities where specially trained community members called Community Health Aides/Practitioners (CHA/Ps) provide health care. In response to CHA/Ps' expressed desire to learn more about cancer, four 5-day cancer education and digital storytelling courses were provided in 2014. Throughout each course, participants explored cancer information, reflected on their personal experiences, and envisioned how they might apply their knowledge within their communities. Each course participant also created a personal and authentic digital story, a methodology increasingly embraced by Indigenous communities as a way to combine storytelling traditions with modern technology to promote both individual and community health. Opportunities to learn of CHA/Ps' experiences with cancer and digital storytelling included a 3-page end-of-course written evaluation, a weekly story-showing log kept for 4 weeks post-course, a group teleconference held 1-2 weeks post-course, and a survey administered 6 months post-course. Participants described digital storytelling as a culturally respectful way to support cancer awareness and education. Participants described the process of creating digital stories as supporting knowledge acquisition, encouraging personal reflection, and sparking a desire to engage in cancer risk reduction activities for themselves and with their families and patients. As a result of creating a personalized digital story, CHA/Ps reported feeling differently about cancer, noting an increase in cancer knowledge and comfort to talk about cancer with clients and family. Indigenous digital stories have potential for broad use as a culturally appropriate health messaging tool.

Engaging Elements of Cancer-Related Digital Stories in Alaska.

The tradition of storytelling is an integral part of Alaska Native cultures that continues to be a way of passing on knowledge. Using a story-based approach to share cancer education is grounded in Alaska Native traditions and people's experiences and has the potential to positively impact cancer knowledge, understandings, and wellness choices. Community health workers (CHWs) in Alaska created a personal digital story as part of a 5-day, in-person cancer education course. To identify engaging elements of digital stories among Alaska Native people, one focus group was held in each of three different Alaska communities with a total of 29 adult participants. After viewing CHWs' digital stories created during CHW cancer education courses, focus group participants commented verbally and in writing about cultural relevance, engaging elements, information learned, and intent to change health behavior. Digital stories were described by Alaska focus group participants as being culturally respectful, informational, inspiring, and motivational. Viewers shared that they liked digital stories because they were short (only 2-3 min); nondirective and not preachy; emotional, told as a personal story and not just facts and figures; and relevant, using photos that showed Alaskan places and people.

Digital storytelling: a tool for health promotion and cancer awareness in rural Alaskan communities.

BACKGROUND: The purpose of this study was to learn community members' perspectives about digital storytelling after viewing a digital story created by a Community Health Aide/Practitioner (CHA/P). METHODS: Using a qualitative research design, we explored digital storytelling likeability as a health-messaging tool, health information viewers reported learning and, if viewing, cancer-related digital stories facilitated increased comfort in talking about cancer. In addition, we enquired if the digital stories affected how viewers felt about cancer, as well as if viewing the digital stories resulted in health behaviour change or intent to change health behaviour. FINDINGS: A total of 15 adult community members participated in a 30-45 minute interview, 1-5 months post-viewing of a CHA/P digital story. The majority (13) of viewers interviewed were female, all were Alaska Native and they ranged in age from 25 to 54 years with the average age being 40 years. Due to the small size of communities, which ranged in population from 160 to 2,639 people, all viewers knew the story creator or knew of the story creator. Viewers reported digital stories as an acceptable, emotionally engaging way to increase their cancer awareness and begin conversations. These conversations often served as a springboard for reflection, insight, and cancer-prevention and risk-reduction activities.

Bridging storytelling traditions with digital technology.

OBJECTIVE: The purpose of this project was to learn how Community Health Workers (CHWs) in Alaska perceived digital storytelling as a component of the "Path to Understanding Cancer" curriculum and as a culturally respectful tool for sharing cancer-related health messages. DESIGN: A pre-course written application, end-of-course written evaluation, and internet survey informed this project. METHODS: Digital storytelling was included in seven 5-day cancer education courses (May 2009-2012) in which 67 CHWs each created a personal 2-3 minute cancer-related digital story. Participant-chosen digital story topics included tobacco cessation, the importance of recommended cancer screening exams, cancer survivorship, loss, grief and end-of-life comfort care, and self-care as patient care providers. All participants completed an end-of-course written evaluation. In July 2012, contact information was available for 48 participants, of whom 24 completed an internet survey. RESULTS: All 67 participants successfully completed a digital story which they shared and discussed with course members. On the written post-course evaluation, all participants reported that combining digital storytelling with cancer education supported their learning and was a culturally respectful way to provide health messages. Additionally, 62 of 67 CHWs reported that the course increased their confidence to share cancer information with their communities. Up to 3 years post-course, all 24 CHW survey respondents reported they had shown their digital story. Of note, 23 of 24 CHWs also reported change in their own behavior as a result of the experience. CONCLUSIONS: All CHWs, regardless of computer skills, successfully created a digital story as part of the cancer education course. CHWs reported that digital stories enhanced their learning and were a culturally respectful way to share cancer-related information. Digital storytelling gave the power of the media into the hands of CHWs to increase their cancer knowledge, facilitate patient and community cancer conversations, and promote cancer awareness and wellness.

Creating dialogue, creating change through the arts.

The "wellness picnic," an interactive hands-on learning activity, was developed to engage people in reflective conversations about their health behaviors and wellness journey. Participants used pictures, colors, and words to transform a paper plate into a symbolic representation of what wellness looked like to them. Within the wisdom of each participant's paper plate drawing, there emerged pathways for living well, creating a respectful place for sharing wellness understandings and cancer risk reduction activities.

Developing the Native People for Cancer Control Telehealth Network.

OBJECTIVE: We aimed to develop a telehealth network to deliver postdiagnosis cancer care clinical services and education to American Indian and Alaska Native patients, their families, and their healthcare providers. We also sought to identify the challenges and opportunities of implementing such a telehealth-based application for this rural and underserved population. MATERIALS AND METHODS: We followed a participatory formative evaluation approach to engage all stakeholders in the telehealth network design and implementation. This approach allowed us to identify and address technical and infrastructure barriers, lack of previous experience with telehealth, and political, legal, and historical challenges. RESULTS: Between September 2006 and August 2009, nine tribal clinics in Washington and 26 clinical sites in Alaska had participated in the telehealth network activities. Network programming included cancer education presentations, case conferences, and cancer survivor support groups. Twenty-seven cancer education presentations were held, with a total provider attendance of 369. Forty-four case conferences were held, with a total of 129 cases discussed. In total, 513 patient encounters took place. Keys to success included gaining provider and community acceptance, working closely with respected tribal members, understanding tribal sovereignty and governance, and working in partnership with cultural liaisons. CONCLUSION: The telehealth network exceeded expectations in terms of the number of participating sites and the number of patients served. Following a participatory formative evaluation approach contributed to the success of this telehealth network and demonstrated the importance of community involvement in all stages of telehealth system design and implementation.

Satisfaction with telehealth for cancer support groups in rural American Indian and Alaska Native communities.

A descriptive study was conducted to determine the information needs of American Indian (AI) and Alaska Native (AN) cancer survivors and assess satisfaction with and acceptability of telehealth support group services for cancer survivors in AI and AN rural communities. AI and AN cancer survivors were asked to complete the Telehealth Satisfaction Survey and two open-ended questions, one regarding information needs and one seeking comments and suggestions about cancer support group meetings. Thirty-two surveys were returned. Information about nutrition during treatment and treatment-related side effects were the most sought after topics. Participants valued the opportunity to interact with other AI and AN cancer survivors who also lived in remote locations and the usefulness of the information presented. The link with geographically distant survivors was valuable to participants as they felt they were no longer alone in their cancer experiences. Determining survivors' information needs provides meaningful topics for future support group education. Telehealth is a viable way to facilitate cancer support groups to AI and AN cancer survivors in rural communities.