title: Beyond Adherence: Health Care Disparities and the Struggle to Get Screened for Colon Cancer.
abstract: Dominant health care professional discourses on cancer take for granted high levels of individual responsibility in cancer prevention, especially in expectations about preventive screening. At the same time, adhering to screening guidelines can be difficult for lower income and under-insured individuals. Colorectal cancer (CRC) is a prime example. Since the advent of CRC screening, disparities in CRC mortality have widened along lines of income, insurance, and race in the United States. We used a community-engaged research method, Photovoice, to examine how people from medically under-served areas experienced and gave meaning to CRC screening. In our analysis, we first discuss ways in which participants recounted screening as a struggle. Second, we highlight a category that participants suggested was key to successful screening: social connections. Finally, we identify screening as an emotionally laden process that is underpinned by feelings of uncertainty, guilt, fear, and relief. We discuss the importance of these findings to research and practice.
authors.affiliation: Washington University School of Medicine, St. Louis, Missouri, USA hunlethj@wudosis.wustl.edu.
authors.forename: Jean M
authors.initials: JM
authors.lastname: Hunleth
authors.affiliation: Antioch College, Yellow Springs, Ohio, USA.
authors.forename: Emily K
authors.initials: EK
authors.lastname: Steinmetz
authors.affiliation: Washington University School of Medicine, St. Louis, Missouri, USA.
authors.forename: Amy
authors.initials: A
authors.lastname: McQueen
authors.affiliation: Washington University School of Medicine, St. Louis, Missouri, USA.
authors.forename: Aimee S
authors.initials: AS
authors.lastname: James
mesh_terms: D000368:Aged; D003110:Colonic Neoplasms / Q000175:diagnosis* / Q000401:mortality / Q000517:prevention & control / Q000523:psychology*; D003113:Colonoscopy / Q000191:economics / Q000523:psychology*; D055088:Early Detection of Cancer / Q000379:methods / Q000523:psychology*; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D054625:Healthcare Disparities; D006801:Humans; D007348:Insurance, Health / Q000191:economics; D008297:Male; D008875:Middle Aged; D008923:Missouri / Q000453:epidemiology; D010349:Patient Compliance / Q000523:psychology*; D010781:Photography; D012944:Social Support; D012959:Socioeconomic Factors
keywords: America, North; adherence, compliance; aging, older people; cancer, screening, and prevention; health care disparities; health, lived experience; photography/photovoice; prevention, illness, and disease