Suchergebnisse

Abstract Background In recent years, shared decision making (SDM) has been promoted as a model to guide interactions between persons with MS and their neurologists to reach mutually satisfying decisions about disease management – generally about deciding treatment courses of prevailing disease modifying therapies. In 2009, Dr. Paolo Zamboni introduced the world to his hypothesis of Chronic Cerebrospinal Venous Insufficiency (CCSVI) as a cause of MS and proposed venous angioplasty ('liberation therapy') as a potential therapy. This study explores the discussions that took place between persons with MS (PwMS) and their neurologists about CCSVI against the backdrop of the recent calls for the use of SDM to guide clinical conversations. Methods In 2012, study researchers conducted focus groups with PwMS (n = 69) in Winnipeg, Canada. Interviews with key informants were also carried out with 15 participants across Canada who were stakeholders in the MS community: advocacy organizations, MS clinicians (i.e. neurologists, nurses), clinical researchers, and government health policy makers. Results PwMS reported a variety of experiences when attempting to discuss CCSVI with their neurologist. Some found that there was little effort to engage in desired discussions or were dissatisfied with critical or cautious stances of their neurologist. This led to communication breakdowns, broken relationships, and decisions to autonomously access alternative opinions or liberation therapy. Other participants were appreciative when clinicians engaged them in discussions and were more receptive to more critical appraisals of the evidence. Key informants reported that they too had heard of neurologists who refused to discuss CCSVI with patients and that neurology as a whole had been particularly vilified for their response to the hypothesis. Clinicians indicated that they had shared information as best they could but recommended against seeking liberation therapy. They noted that being respectful of patient emotions, values, and hope were also key to maintaining good relationships. Conclusions While CCSVI proved a challenging context to carry out patient-physician discussions and brought numerous tensions to the surface, following the approach of SDM can minimize the potential for unfortunate outcomes as much as possible because it is based on principles of respect and more two-way communication.

Abstract Background The belief that early detection is the best protection against cancer underlies cancer screening. Emerging research now suggests harms associated with early detection may sometimes outweigh the benefits. Governments, cancer agencies, and organizations that publish screening guidelines have found it is difficult to "un-ring the bell" on the message that "early detection is your best protection" because of its widespread communication and enduring resonance. This study explores affective factors—and their interplay with relevant analytical factors—in public/laypersons' decision making about cancer screening. Methods A total of 93 people (47 men, 46 women) attended focus groups about, respectively, prostate cancer screening and breast cancer screening in two Canadian cities. Results Affective factors were a major influence on many focus group participants' decision making about cancer screening, including fear of cancer and a generalized enthusiasm for prevention/screening, and they were often inspired by anecdotes about the cancer experiences of family and friends. Affect also existed alongside more analytical factors including assessments of reduced risk in the management of any cancer diagnosis if caught early, and, for men, the belief that an unreliable test is "better than nothing," and that men deserve prostate cancer screening because women have breast and cervical cancer screening. Affective factors were particularly noticeable in the sub-groups most supportive of screening and the "early detection" message: older women who felt that mammogram screening should begin at age 40 rather than 50, and older men who felt that prostate cancer screening should be expanded beyond its current unorganized, opportunistic usage. In contrast, younger participants displayed less affective attachments to "early detection" messages and had greater concerns about harms of screening and were more receptive to nuanced messages informed by evidence. Conclusion Policymakers attempting to communicate more nuanced versions of the "early detection" message need to understand the role of affect alongside other judgments brought into laypersons' decision making processes and anticipate how affective responses to their messages will be shaped, transformed, and potentially subverted by external forces beyond their control. Particularly overt external factors are campaigns by cancer advocacy organizations actively promoting breast and prostate cancer awareness and screening to younger women and men using affectively-charged messages.

AbstractWe examined the perspectives of the Red River Métis citizens in Manitoba, Canada, during the H1N1 and COVID‐19 pandemics and how they interpreted the communication of government/health authorities' risk management decisions. For Indigenous populations, pandemic response strategies play out within the context of ongoing colonial relationships with government institutions characterized by significant distrust. A crucial difference between the two pandemics was that the Métis in Manitoba were prioritized for early vaccine access during H1N1 but not for COVID‐19. Data collection involved 17 focus groups with Métis citizens following the H1N1 outbreak and 17 focus groups during the COVID‐19 pandemic. Métis prioritization during H1N1 was met with some apprehension and fear that Indigenous Peoples were vaccine‐safety test subjects before population‐wide distribution occurred. By contrast, as one of Canada's three recognized Indigenous nations, the non‐prioritization of the Métis during COVID‐19 was viewed as an egregious sign of disrespect and indifference. Our research demonstrates that both reactions were situated within claims that the government does not care about the Métis, referencing past and ongoing colonial motivations. Government and health institutions must anticipate this overarching colonial context when making and communicating risk management decisions with Indigenous Peoples. In this vein, government authorities must work toward a praxis of decolonization in these relationships, including, for example, working in partnership with Indigenous nations to engage in collaborative risk mitigation and communication that meets the unique needs of Indigenous populations and limits the potential for less benign—though understandable—interpretations.