Advancing Education, Research, and Quality of Care for the Head and Neck oncology patient.
Introduction: There are almost 50 million individuals currently residing in the United States who were born outside of the country. Immigrants are significantly less likely to access preventive healthcare services, including cancer screenings. Up to 70% of all cases of head and neck cancer (HNC) are thought to be preventable through tobacco cessation, reduction in alcohol use, and through HPV vaccination. However, awareness of HNC and risk factors is low, and access to preventive services is disparate, especially among immigrants. Community-engaged cancer education programs offer a promising approach to increase awareness and early detection. Project CHECKERS (Community Head and Neck Cancer Knowledge, Engagement, Research and Screening) is a novel, community-engaged HNC screening and education initiative focused on immigrants/refugees in the Raleigh-Durham area, North Carolina (NC). We assessed HNC awareness and perceived risk in an immigrant/refugee population in NC.
Methods: Using the National Academy of Medicine’s assessing community engagement (ACE) framework, we developed a seven-person advisory board, which included community partners, community liaisons, and clinicians. Our primary community partner was the North Raleigh International Baptist Church, a multi-ethnic congregation in Raleigh. We conducted focus groups with participants in Swahili and Arabic, focused on community needs in the domains of HNC prevention, risk factors, early detection, and health equity. Recordings were transcribed verbatim and translated to English. Using rapid analysis techniques, we identified common challenges, educational needs and barriers to HNC prevention.
Results: We had a total of 14 participants from two focus groups. There were eight key themes that emerged from our qualitative analysis: health needs in the community, oral health, oral and dental care, knowledge and experience with HNC, perceived risk factors of HNC, screening, HPV vaccine, and recommendations for informing people about HNC. Oral health or associated cancer was seen as a low priority due to the high cost of dental care. Participants described delayed dental visits until pain was severe, often opting for home care or traditional treatments. Knowledge of HNC was limited, with participants uncertain about symptoms such as swelling or mouth ulcers. There was however interest in more educational opportunities to learn about smoking, alcohol use, poor diet as potential risk factors for HNC. Distrust in the healthcare system was highly prevalent in this population, especially around screening and diagnosis, and faith was often considered an alternative to medical intervention. HPV vaccine awareness was limited, with participants expressing hesitancy about vaccinating their children without more information. The need for more culturally tailored education through religious organizations and home visits was emphasized to mitigate mistrust.
Conclusions: There are critical gaps in knowledge, barriers to care, and mistrust in healthcare systems within the immigrant/refugee community with regards to HNC. There is a crucial need for culturally informed HNC prevention and education programs in this population of immigrants/refugees, in partnership with trusted gatekeepers, such as faith-based community leaders.