Perspectives of cancer prevention and control resources from stakeholders in rural southern Illinois

Abstract

Purpose Rural residents have a higher cancer burden than urban residents, which is likely related to multiple socioecological factors. This study sought to investigate the perspectives of a diverse set of rural stakeholders regarding access to cancer prevention and control resources in rural southern Illinois. Methods Stakeholders were recruited from counties in southern Illinois and included residents (cancer survivors or caregivers), leaders of community‐based organizations with health‐related missions, and health care providers. Individual interviews and focus groups assessed recommended cancer prevention, control, and treatment resources; helpfulness of regional resources; and needed resources. The research team used an iterative approach to thematic analysis wherein codes were derived inductively and refined repeatedly to reveal overarching themes. Findings Forty‐four stakeholders reported challenges to health care access (eg, travel distance, financial burdens, and poor quality of care) and limited access to supportive care services (lack of caregiver support and “spotty” area resources). To mitigate these barriers, local residents used a combination of individual (self‐reliance and adaptive measures) and organizational (patient navigation and financial services) approaches. Finally, stakeholders reported multiple forms of cancer control and prevention communication, including formal discussions with health care providers and various types of informal social support (eg, friends and family). Conclusions Stakeholders experienced barriers to cancer prevention and control often mitigated by a reliance on personal adaptations, nonclinical organizational supports, and informal support systems. While resources remain minimal in southern Illinois, researchers and practitioners must make efforts to leverage existing community organizations and social networks to improve cancer outcomes in this region.

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

“…Our participants identified several barriers that can be generally classified according to the categories established by the American College of Surgeons Commission on Cancer: patient‐, provider‐, and health system‐based barriers 41,42 . Our findings are congruent with previous studies that identified patient‐level barriers among rural residents, including finances (treatment cost and insurance coverage), transportation, and lack of social support 43 . Finances are a well‐known barrier to cancer care.…”

The Rural Household Production of Health Approach: Applying Lessons from Zambia to Rural Cancer Disparities in the U.S.

“…Further, as Sangaramoorthy has shown in relation to immigrants in the U.S., the “precarity that characterizes rural health systems is intensified for growing communities of immigrants, who must constantly contend with the broader logics of exclusion that are at the heart of health-care and immigration reform, while also seeking care” [ 36 ]. The implications of historical and current day policies on households and on health are evident in the rural cancer research in the U.S., and are particularly pressing for Black, Latino, and Native residents of rural areas [ 2 , 41 ]. Distance to specialists and the shuttering of rural hospitals has impacted rural care seeking.…”

“…The above case, despite being from Zambia, touches on issues that run throughout rural cancer disparities research in the U.S. including distance and transportation to specialty care [ 1 , 2 , 3 ], late diagnosis and treatment [ 2 , 4 ], financial strain [ 2 , 5 ], family caregiving [ 6 , 7 ], and time spent in or adjacent to an urban hospital (e.g., in Hope Lodge or other lodging for cancer patients and caregivers) [ 8 ]. These issues are becoming even more pressing in the U.S. as rural hospital closures reach record highs [ 9 , 10 ].…”

Consequences of Structural Urbanism: Urban–Rural Differences in Cancer Patients’ Use and Perceived Importance of Supportive Care Services from a 2017–2018 Midwestern Survey

“…Our findings also support that supportive care needs education and programming which addresses the structural inequalities affecting rural cancer patients and their families are needed [ 45 ]. In the absence of trusted and reliable cancer education resources, rural residents may use less reliable information sources including the internet, social media, tobacco companies, or ill-informed friends and family [ 28 , 46 ]. In an investigation testing the feasibility of a program that provides a survivorship care plan with enhanced patient education resources compared to a standard survivorship care plan, participants with the enhanced survivorship care plan reported improvements in multiple supportive care needs including emotional support, physical well-being, and nutrition [ 47 ].…”

“…Due to Structural Urbanism, rural cancer patients experience reduced access to resources (e.g., financial counselors, mental health professionals) that could resolve unmet supportive care needs (e.g., financial hardship, anxiety related to cancer) than their urban counterparts [ 16 , 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 ]. To access these services, rural residents often have to travel to distal urban centers, potentially bearing additional financial, social, and physical burdens to access these services [ 5 , 28 ]. This is unfortunate, as secondary supportive care services are available before, during, and after active treatment to minimize long-term unmet supportive care needs.…”