Beyond Adherence

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-underserved 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.

Side Effect Perceptions and Their Impact on Treatment Decisions in Women

“…This result was not anticipated, but it is consistent with public health research demonstrating that structural barriers, such as lack of employer-paid leave in the U.S., can thwart patients’ desire and intentions to obtain needed healthcare [33]. Further research needs to identify the interpersonal, institutional, and policy conditions under which medications that have physically challenging side effects are most likely to be perceived as most aversive.…”

“…Although the resulting component structure was very similar to the one obtained with unstandardized ratings (see Supplemental Material), the Components 3 and 4 were considerably less interpretable. In addition the regression results accounted for less variance and were less consistent with public health research regarding the role of structural barriers in health decisions [33]. Therefore, we base our main conclusions on the analyses with the nonstandardized responses.…”

What is a good medical decision? A research agenda guided by perspectives from multiple stakeholders

“…These factors are described in the published literature and were discussed extensively by stakeholders and audience members at both conference sessions. Specifically, patients who do not have access to reliable transportation, sufficient healthcare coverage, paid leave from work, and alternative childcare or eldercare services may not be able to choose a desired option because doing so is either logistically infeasible or has such severe negative consequences for other aspects of their lives that the choice is practically infeasible (Hunleth et al, 2016; Lara et al, 2001). One stakeholder reported that rural patients facing a diagnosis of ductal carcinoma in situ of the breast may choose mastectomy over lumpectomy plus radiation in part because it was not possible to make multiple trips to the treatment center located three hours away: “If three quarters of your patients do not have paid time off, then the choices they are making are not your clinical outcome choices.…”

“…Some decision aids and patient education materials have been criticized for emphasizing individual decision making and responsibility while also overlooking structural factors that can constrain patients’ decisions (Hunleth et al, 2016). Providing information without considering structural constraints can cause emotional distress, as recounted by one stakeholder: “a patient who…[became aware] of treatment options that were not actually viable, practical options for her [due to structural constraints] explicitly said, ‘I wish you had not told me this.…”

“…For example, one can have affective feelings toward a disease (e.g., fear), towards treatment options (e.g., fear, hope), and towards different aspects of treatment options (e.g., positive affect towards benefits, negative affect towards risks), and each of these considerations can have different effects on decisions. Whereas one person might forego screening due to fear of finding out she has cancer, another might under go screening because he fears late detection (Consedine et al, 2004; Hunleth et al, 2016). Fear and concern can also prompt people to make decisions resulting in under-treatment of disease due to concern about experiencing side effects (Horne et al, 2007).…”