Indigenizing and Ruralizing NCI Screen to Save Program: Resources, Optimizing Outreach, Teaching, Science (ROOTS)

S2S is an initiative with national implementation at the macro level by the S2S Collaborative with a common goal to increase awareness and knowledge of CRC and promote the uptake of US Preventive Services Task Force screening recommendations for all people 45 years of age and older. This project was conducted in the Northeast USA and encompassed engagement with rural and Indigenous urban, suburban, and rural populations with the guidance of an Indigenous community advisory board. The CAB was responsible for approving all cultural adaptations of S2S material to ensure appropriateness and accuracy. An institutional review board (IRB) approval was also obtained to expand the study beyond the RP catchment area. Subsequently, any research activities were also approved by the tribal governments of sovereign Native Nations. Deidentified survey data were collected and stored in an encrypted survey database. An indigenous cancer research team in collaboration with the cancer center’s biostatistical team provided the sole oversight of the data collected in the study.

The first phase of the project involved engaging current and establishing new Indigenous and non-Indigenous not-for-profit organizations to jointly create a “toolkit” that included (1) a one-page overview, (2) an Indigenous-specific and rural outreach plan template and strategies for engagement, (3) an Indigenized and ruralized educational/intervention presentation with key culturally and regionally attuned CRC messaging, (4) a pre- and post-educational/intervention activity survey with instructions for data collection, and (5) an Indigenized and ruralized NCI-approved general CRC messaging that was disseminated through an NCI-Designated Cancer Centers and Department of Indigenous Cancer Health via outreach. This included tribal newsletters, social media, and attending tribal health fairs using large displays (e.g., inflatable colon). The COVID-19 pandemic prevented most in-person research activities. Intervention staff and CHE in turn developed means to present the intervention virtually, including virtual conferencing with area leaders on and off reservation territories.

Instrumentation

The project was delivered in a hybrid fashion (virtual and in-person when allowable) due to COVID-19 pandemic restrictions and social distancing guidelines. In-person education intervention was conducted using paper surveys and while projecting the presentation on a shared screen. The method of presentation delivery depended on the size of the classes, varying from one to twenty individuals. Virtual delivery was conducted using multimodal virtual platforms and face-to-face video communication (e.g., Zoom), Twilio (an SMS engagement platform), and REDCap (an encrypted survey distribution tool). Seventy-six percent of study participants chose virtual education; the remaining 24% chose in-person. Integrating the Twilio application within REDCap allows the study interventionist to send and collect survey data and engage study participants with future SMSs. Once participants connected with the CHE either in person or virtually, they first consented to the study prior to data collection. A 23-question demographic/family history and 19-question pre-educational/intention survey were then sent to their cellphone via SMS or email address depending on preference. Most participants completed surveys on their cell phones. In-person sessions, offered pre and post-pandemic, used the same structure and surveys. They chose to either fill out paper surveys, or have surveys sent to their cellphone. Once completed, the presentation was administered, followed by a post-education/intention survey that was again sent to the participant if conducted virtually. Pre/post-education surveys contained identical questions to assess changes in CRC knowledge and CRC screening intentions post-intervention. The average total time to complete the intervention ranged from 45 to 60 minutes.

The primary intervention materials included a culturally adapted presentation and CRC infographic administered in the same fashion regardless of virtual or in-person delivery. The key concepts within the presentation materials remained unchanged. In addition, based on Muller et al. [16] and Ocvirk et al. [17], following the intervention session, (1) culturally appropriate SMS was sent once per month for 3 total months encouraging CRC-eligible participants to consider screening.

The ROOTS program administered pre/post surveys to evaluate the effectiveness of the S2S health intervention program. After completion of the ROOTS program, participants connected with the NCI-designated cancer center’s Indigenous and Rural Patient Navigation program to continue conversations on screening, treatment, survivorship, and palliative care. The data included in this analysis focus on pre- and post-test results on basic cancer education and prevention messaging. In addition, five items assessed intentions to speak with a healthcare provider, get screened, talk to family and friends about CRC, eat healthier, and increase physical activity. The true/false items covered the knowledge of screening methods and guidelines and risk factors for CRC, including heritability. The surveys also contained information regarding participant demographics, CRC screening history, family history of CRC, and intentions to engage in healthful behaviors regarding CRC screening and prevention. Existing instruments found in previous peer-reviewed work formed the framework for survey questions [15].

Participants

The community-based sample was recruited by the Indigenous research team CHE, a comprehensive cancer center’s Department of Indigenous Cancer Health team member, Indigenous/rural community advisory board, in collaboration with the cancer center’s creative services and marketing department. The research component involved a partnership with off-territory Indigenous and allied rural communities with a geographic emphasis on the cancer center’s catchment area counties (9 counties), rural and suburban landscapes, and partners adjacent to the reservation/territories. The initial participating Western New York (WNY) tribe went into a global research moratorium. However, another tribe in Northern NY approved in-person and virtual research activities in phase two of the study. Of the eighty-two participants, 40% identified as Indigenous, with the remaining participants identifying as more than one race.

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