Rethinking the therapeutic misconception: social justice, patient advocacy, and cancer clinical trial recruitment in the US safety net.

BackgroundApproximately 20% of adult cancer patients are eligible to participate in a clinical trial, but only 2.5-9% do so. Accrual is even less for minority and medically underserved populations. As a result, critical life-saving treatments and quality of life services developed from research studies may not address their needs. This study questions the utility of the bioethical concern with therapeutic misconception (TM), a misconception that occurs when research subjects fail to distinguish between clinical research and ordinary treatment, and therefore attribute therapeutic intent to research procedures in the safety net setting. This paper provides ethnographic insight into the ways in which research is discussed and related to standard treatment.MethodsIn the course of two years of ethnographic fieldwork in a safety net hospital, I conducted clinic observations (n=150 clinic days) and in-depth in-person qualitative interviews with patients (n=37) and providers (n=15). I used standard qualitative methods to organize and code resulting fieldnote and interview data.ResultsFindings suggest that TM is limited in relevance for the interdisciplinary context of cancer clinical trial recruitment in the safety net setting. Ethnographic data show the value of the discussions that happen prior to the informed consent, those that introduce the idea of participation in research. These preliminary discussions are elemental especially when recruiting underserved and vulnerable patients for clinical trial participation who are often unfamiliar with medical research and how it relates to medical care. Data also highlight the multiple actors involved in research discussions and the ethics of social justice and patient advocacy they mobilize, suggesting that class, inequality, and dependency influence the forms of ethical engagements in public hospital settings.ConclusionOn the ground ethics of social justice and patient advocacy are more relevant than TM as guiding ethical principles in the context of ongoing cancer disparities and efforts to diversify clinical trial participation

Improving healthcare empowerment through breast cancer patient navigation: a mixed methods evaluation in a safety-net setting.

BackgroundBreast cancer mortality rates in the U.S. remain relatively high, particularly among ethnic minorities and low-income populations. Unequal access to quality care, lower follow up rates, and poor treatment adherence contribute to rising disparities among these groups. Healthcare empowerment (HCE) is theorized to improve patient outcomes through collaboration with providers and improving understanding of and compliance with treatment. Patient navigation is a health care organizational intervention that essentially improves healthcare empowerment by providing informational, emotional, and psychosocial support. Patient navigators address barriers to care through multilingual coordination of treatment and incorporation of access to community services, support, and education into the continuum of cancer care.MethodsUtilizing survey and qualitative methods, we evaluated the patient navigation program in a Northern California safety-net hospital Breast Clinic by assessing its impact on patients' experiences with cancer care and providers' perspectives on the program. We conducted qualitative interviews with 16 patients and 4 service providers, conducted approximately 66 hours of clinic observations, and received feedback through the self-administered survey from 66 patients.ResultsThe role of the patient navigator at the Breast Clinic included providing administrative assistance, psychosocial support, improved knowledge, better understanding of treatment process, and ensuring better communication between patients and providers. As such, patient navigators facilitated improved collaboration between patients and providers and understanding of interdisciplinary care processes. The survey results suggested that the majority of patients across all ethnic backgrounds and age groups were highly satisfied with the program and had a positive perception of their navigator. Interviews with patients and providers highlighted the roles of a navigator in ensuring continuity of care, improving treatment completion rates, and reducing providers' workload and waiting time. Uncertainty about the navigator's role among the patients was a weakness of the program.ConclusionsPatient navigation in the Breast Clinic had a positive impact on patients' experiences with care and healthcare empowerment. Clarifying uncertainties about the navigators' role would aid successful outcomes

Health literate organizations: Are clinical trial sites equipped to recruit minority and limited health literacy patients?

Background. Racial/ethnic minority patients are less likely than non-Latino white patients to participate in cancer clinical trials. A key barrier to participation is limited health literacy which is more common among minorities. At the organizational level, it is important that clinical trials sites become better equipped to recruit minority patients by expanding their organizational health literacy including language competency and outreach efforts. We explored the characteristics of clinical trial sites that are associated with these health literate behaviors. Methods. We identified 353 breast clinical trials recruiting participants in 2006 from four states (California, Florida, Illinois, and New York) through the National Cancer Institute Physician Data Query system. From October 2008 to November 2009, we contacted one research team member (RTM) from each site for a telephone survey to assess the site’s health literate characteristics. Results. Of 233 RTMs who responded, 93% were female and 89% were US-born. Overall, 48% of sites offered supplementary trial information, 80% offered materials to assist with patient navigation and 45% reported outreach efforts. Lower percentages offered information in other languages while 65% offered professional interpretation services. Sites with \u3e10% limited English proficiency (LEP) patients were more likely than their counterparts to offer consent forms (OR=3.13, 1.36-7.19) and supplementary information about trials in other languages (OR=2.52, 1.15-5.52). Sites with diverse patient populations (\u3e10% Latino) were also more likely than less diverse sites to engage in outreach (OR=1.97, 1.07-3.60), to offer consent forms (OR=2.72, 1.38-5.36), supplementary information about trials (OR=2.58, 1.24-5.36), and materials to improve patient navigation (OR=2.50, 1.22-5.13) in other languages. Conclusions. Efforts to recruit diverse participants were limited. Practice type and diversity of patient population were associated with sites’ efforts to accommodate these characteristics, suggesting that sites were responsive to the needs of their patients when diversity was prevalent

Factors associated with hepatitis B testing among cambodian american men and women.

Cambodian Americans have an elevated risk of liver cancer. This health disparity is attributable to high rates of hepatitis B virus (HBV) infection. Our study examined factors associated with HBV testing among Cambodian men and women. A population-based survey was conducted in the Seattle area. The Health Behavior Framework guided our survey instrument development. We attempted to interview a man and a woman in each household. The sample included 300 men and 367 women. About one-half of the male (45%) and female (54%) respondents had been tested for HBV. Two factors were independently associated with testing among men and women: a doctor had recommended testing and had asked a doctor for testing. Knowing that someone who looks and feels healthy can spread HBV was independently associated with testing among men. Low levels of HBV testing remain a public health problem among Cambodians. Interventions should improve patient-provider communication by encouraging providers who serve Cambodians to recommend HBV testing, as well as by empowering Cambodians to ask for testing

Family Support and Readiness to Consider Smoking Cessation among Chinese and Vietnamese American Male Smokers

Introduction. Smoking prevalence is disproportionately high among Asian American immigrant men with limited English proficiency. Understanding the role of family support may provide insights into culturally acceptable strategies to promote smoking cessation. Aims. This study examined how family support was associated with readiness to consider smoking cessation among Chinese and Vietnamese American male daily smokers. Methods. We analyzed baseline data (N = 340) from a cluster randomized trial of a family-based healthy lifestyle intervention. We assessed the frequency of receiving family support in various forms (encouraging use of cessation resources, praising efforts, checking in, and reminding of familial role). Multiple regression analysis was used to determine associations between family support areas and readiness to consider smoking cessation, controlling for covariates. Results/Findings. Reporting a higher frequency of receiving praise and encouragement for one’s efforts to quit was positively associated with readiness to consider cessation. Other areas of family support were not significant. Conclusions. These findings provide evidence to explore specific areas of family support in enhancing Asian American smokers’ readiness to consider cessation. As there is high interest from Asian American family members to support their smokers for quitting, culturally specific and acceptable strategies are needed to promote smoking cessation among Asian Americans

When Pandemics Collide: The Impact of COVID-19 on Childhood Obesity

• Children with obesity face increased biopsychosocial risks during COVID-19. • Stress exacerbates inflammation and immune response in obesity and COVID-19. • The COVID-19 pandemic has significantly interrupted children\u27s daily routines. • The health effects of the obesogenic environment are exacerbated by COVID-19. • Access to timely, comprehensive healthcare is critical during COVID-19

Psychiatric Disorder Criteria and their Application to Research in Different Racial Groups

BACKGROUND: The advent of standardized classification and assessment of psychiatric disorders, and considerable joint efforts among many countries has led to the reporting of international rates of psychiatric disorders, and inevitably, their comparison between different racial groups. RESULTS: In neurologic diseases with defined genetic etiologies, the same genetic cause has different phenotypes in different racial groups. CONCLUSION: We suggest that genetic differences between races mean that diagnostic criteria refined in one racial group, may not be directly and simply applicable to other racial groups and thus more effort needs to be expended on defining diseases in other groups. Cross-racial confounds (in addition to cultural confounds) make the interpretation of rates in different groups even more hazardous than seems to have been appreciated

Chumnguh Thleum: Understanding Liver Illness and Hepatitis B Among Cambodian Immigrants

Cambodian immigrants are over 25 times more likely to have evidence of chronic hepatitis B infection than the general US population. Carriers of HBV are over 100 times more likely to develop liver cancer than non-carriers. Liver cancer incidence is the second leading cancer for Cambodian men and the sixth for Cambodian women. Despite this, this underserved population has received very little attention from health disparities researchers. Culturally and linguistically appropriate interventions are necessary to increase hepatitis B knowledge, serologic testing, and vaccination among Cambodian Americans. Eight group interviews were held with Cambodian American men (48) and women (49). Focus group discussion revealed unanticipated information about sociocultural influences on participants’ understanding about hepatitis B transmission, disease course, and prevention and treatment informed by humoral theories underlying Khmer medicine, by biomedicine, and by migration experiences. Our findings reveal the value of qualitative exploration to providing cultural context to biomedical information—a formula for effective health promotion and practice