Engaging Communities in Cancer Prevention and Control Activity Prioritization through a Statewide Needs Assessment: A Case Study from Nebraska.

Community outreach and engagement (COE) activities are important in identifying catchment area needs, communicating these needs, and facilitating activities relevant to the population. The National Cancer Institute-designated cancer centers are required to conduct catchment-wide cancer needs assessments as part of their COE activities. The University of Nebraska Medical Center Buffett Cancer Center undertook a three-year-long process to conduct a needs assessment, identify priorities, and develop workgroups to implement cancer prevention and control activities. Activities were conducted through collaborations with internal and external partners. The needs assessment focused on prevention, early detection, and treatment of cancer and involved secondary data analysis and focus groups with identified underrepresented priority populations (rural, African American, Hispanic, Native American, and LGBTQ+ populations). Results were tailored and disseminated to specific audiences via internal and external reports, infographics, and presentations. Several workgroups were developed through meetings with the internal and external partners to address identified priorities. COE-specific initiatives and metrics have been incorporated into University of Nebraska Medical Center and Buffett Cancer Center strategic plans. True community engagement takes a focused effort and significant resources. A systemic and long-term approach is needed to develop trusted relationships between the COE team and its local communities.

African American and Hispanic Cancer Survivors' and Caregivers' Experiences in Nebraska.

Racial and ethnic minority populations experience poorer cancer outcomes compared to non-Hispanic White populations, but qualitative studies have typically focused on single subpopulations. We explored experiences, perceptions, and attitudes toward cancer care services across the care continuum from screening through treatment among African American and Hispanic residents of Nebraska to identify unique needs for education, community outreach, and quality improvement. We conducted four focus groups (N = 19), April-August 2021 with people who were aged 30 or older and who self-identified as African American or Hispanic and as cancer survivors or caregivers. Sessions followed a structured facilitation guide, were audio recorded and transcribed, and were analyzed with a directed content analysis approach. Historical, cultural, and socioeconomic factors often led to delayed cancer care, such as general disuse of healthcare until symptoms were severe due to mistrust and cost of missing work. Obstacles to care included financial barriers, transportation, lack of support groups, and language-appropriate services (for Hispanic groups). Knowledge of cancer and cancer prevention varied widely; we identified a need for better community education about cancer within the urban Hispanic community. Participants had positive experiences and a sense of hope from the cancer care team. African American and Hispanic participants shared many similar perspectives about cancer care. Our results are being used in collaboration with national and regional cancer support organizations to expand their reach in communities of color, but structural and cultural barriers still need to be addressed.

Qualitative Analysis of Colorectal Cancer Screening for African American and Hispanic Populations in Nebraska: an Application of the PRECEDE Framework.

Nationally and in Nebraska, African Americans (AA) and Hispanics have lower colorectal cancer (CRC) screening rates compared to non-Hispanic Whites. We aimed to obtain perspectives from AA and Hispanic cancer survivors and caregivers in Nebraska about CRC screening to improve outreach efforts. Data from four virtual focus groups (AA female, AA male, Hispanic rural, and Hispanic urban) conducted between April-August 2021 were analyzed using a directed content approach based on the Predisposing, Reinforcing, and Enabling Constructs in Educational Diagnosis and Evaluation (PRECEDE) model. Most of the 19 participants were female (84%) and survivors (58%). Across groups, awareness of colonoscopy was high, but awareness of fecal testing needed to be higher, with confusion about different types of fecal tests. Predisposing factors were trust in the health system; awareness of CRC screening; machismo; fear of cancer; embarrassment with screening methods; and negative perceptions of CRC screening. Enabling factors included provider recommendations, healthcare access, and insurance. Reinforcing factors included prioritizing personal health and having a support system. Suggestions to improve screening included increasing healthcare access (free or low-cost care), increasing provider diversity, health education using various methods and media, and enhancing grassroots health promotion efforts. Lack of awareness, accessibility issues, attitudes and perceptions of CRC and CRC screening, trust, and cultural and linguistic concerns are major issues that need to be addressed to reduce CRC screening disparities among AA and Hispanic adults.

Qualitative Analysis of Colorectal Cancer Screening in Rural Nebraska.

Compared to urban residents, rural populations are less likely to engage in colorectal cancer (CRC) screening. As part of a statewide cancer needs assessment, we aimed to elicit rural perspectives about CRC screening and resources. We conducted three focus groups with rural Nebraska cancer survivors and caregivers (N = 20) in Spring 2021 using a collective case study design. Participant awareness of and knowledge about CRC screening methods varied across focus groups; overall, 95% of participants had heard of colonoscopy. Participants were less familiar with fecal tests and had confusion about them. Colonoscopy was associated with negative perceptions regarding the time, cost, and discomfort of the preparation and procedure, but some providers did not discuss alternative methods unless the patient resisted colonoscopy. Healthcare providers played a key role educating rural communities about CRC screening recommendations (age, risk) and testing options and being persistent in those recommendations. CRC awareness campaigns should include a variety of communication channels (TV, radio, billboards, health fairs, churches, healthcare settings). Promotion of CRC screening should include education about screening age guidelines, alternative test types, and informed decision-making between provider and patient regarding preferred screening methods based on the pros and cons of each test type. Individuals with a family history of colon issues (Crohn's disease, CRC) are considered high risk and need to be aware that screening should be discussed at earlier ages.

Qualitative analysis of cancer care experiences among rural cancer survivors and caregivers.

PURPOSE: Rural (vs urban) patients experience poorer cancer outcomes and are less likely to be engaged in cancer prevention, such as screening. As part of a community needs assessment, we explored rural cancer survivors' and caregivers' experiences, perceptions, and attitudes toward cancer care services. METHODS: We conducted 3 focus groups (N = 20) in Spring 2021 in rural Nebraska. FINDINGS: Three patterns of cancer diagnosis were regular care/screening without noticeable symptoms, treatment for symptoms not initially identified as cancer related, and symptom self-identification. Most participants, regardless of how diagnosis was made, had positive experiences with timely referral for testing (imaging and biopsy) and specialist care. Physician interpersonal skills set the tone for patient-provider communication, which colored the perception of overall care. Participants with physicians and care teams that were perceived as "considerate," "compassionate," and "caring" had positive experiences. Participants identified specific obstacles to care, including financial barriers, transportation, and lack of support groups, as well as more general cultural barriers. Survivors and caregivers identified organization-based supports that helped them address such barriers. CONCLUSIONS: Rural populations have unique perspectives about cancer care. Our results are being used by the state cancer coalition, state cancer control program, and the National Cancer Institute-designated cancer center to prioritize outreach and interventions aimed to reduce rural cancer disparities, such as revitalizing lay cancer navigator programs, conducting webinars for primary care and cancer specialty providers to discuss these findings and identify potential interventions, and collaborating with national and regional cancer support organizations to expand reach in rural communities.