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

Positioning For Elementary School Success: Charting The Journey Of Adopting And Leading School Reform

ABSTRACT The purpose of this longitudinal case study was to develop a process and structure for adopting and leading critical school reform initiatives within a rural North Dakota pre-kindergarten through fourth grade elementary school. Elementary principals can use this process and structure to benefit staff, and ultimately, to improve student academic achievement. This longitudinal case study identified factors that facilitated or hindered a rural practicing elementary principal, staff, and school while implementing federal, state, and local school reform initiatives beginning in the 2005-2006 school year. This longitudinal case study utilized a qualitative, grounded theory and case study approach to identify: (a) What factors facilitated or hindered the development of a process and structure for adopting and leading critical school reform initiatives, (b) What role key stakeholders played in the development of a process and structure for adopting and leading critical school reform initiatives, and (c) What effects the development of a process and structure for adopting and leading critical school reform initiatives had on student achievement. For the purpose of this longitudinal case study, key stakeholders included: a school district superintendent, elementary principal, elementary classroom teachers and staff, school specialists, and members of school district committees. School district data included: public documents, committee meeting and survey results, observations, field notes, along with information obtained from the North Dakota Department of Public Instruction\u27s website relating to Century Elementary School for school years ranging from 2005 through 2011. Results from this longitudinal case study explain implementation of school reform is complicated because many uncontrollable variables infiltrate the daily work of school leaders. The complication of school reform detracts their attention from the work that is important. The study results reflected seven school years of events summarized for the purpose of explaining school reform implementation over time for continuous improvement and development which took place in increments and stages

Alternative methods for newborn urine sample collection

This project investigated the accuracy of laboratory results of urine samples collected from cotton balls as compared with samples collected from catheterization, preemie pampers and newborn pampers. Also, it examined the cotton ball\u27s effect on the infant\u27s skin upon its removal. Comparisons in test results were made concerning the Directigen test for Group B strep (GBS) and labstick analysis, using descriptive and inferential statistical analysis. The infants (21) who were tested for GBS using catheter and cotton ball samples yielded the same results. Urine samples subjected to labstick analysis were obtained from 30 infants, the urine being extracted from preemie pampers, newborn pampers, and cotton balls placed in preemie pampers. Samples obtained from cotton balls and preemie pampers yielded equivalent results. However, significant differences were found in pH and specific gravity between newborn pamper samples and samples obtained from cotton balls or preemie pampers. No redness or skin breakdown was observed