Four Kinds of Hard: An Understanding of Cancer and Death among Latino Community Leaders

Early integration of palliative care after a diagnosis of cancer improves outcomes, yet such care for Latino populations is lacking in rural regions of the United States. We used a participatory action research design with Latino community leaders from emerging immigrant communities in North Carolina to explore sociocultural perspectives on cancer and death. Thematic analysis was conceptualized as Four Kinds of Hard represented by four themes: Receiving an Eviction Notice, Getting in the Good Book, Talking is (Sometimes) Taboo, and Seeing Their Pain Makes us Suffer. These themes captured fears of deportation, coping with cancer through faithfulness, ambivalence about advance care planning, and a desire to spare families from suffering. Findings suggest strategies to improve conversations about end-of-life wishes when facing advanced illness and death. This study demonstrates the importance of training Latino community leaders to improve palliative care and bridge service gaps for Latino families living in emerging rural communities.OA publication support through Carolina Consortium agreement with Sag

Family Interactions Among African American Prostate Cancer Survivors

Prostate cancer affects African Americans at a higher rate than any other ethnic group in the United States. Prostate cancer does not only affect the man with the disease but also affects those individuals who are closest to him, such as his family and friends. Open communication is valuable in coping with stressors that are affiliated with chronic illnesses. This article focuses on family and friend social support of men with prostate cancer. Data analysis revealed that support from family members and friends plays an important role in how men cope with their treatment and recovery from prostate cancer. Originally published Family and Community Health, Vol. 31, No. 3, July-Sep 200

Responding to health and social needs of aging Latinos in new-growth communities: a qualitative study

Background The development of new-growth communities of Latino immigrants in southern states has challenged the traditional health and social service infrastructure. An interprofessional team of service providers, Latino leaders, and university faculty partnered to establish linkages with the Latino community and providers serving aging adults and to explore the health and social needs of aging Latinos residing in a rural region. Methods A qualitative descriptive study was conducted through a community-university partnership, the Aging Latino Research Team (ALRT). Data were generated from nine focus groups and 15 key informant interviews with Latino and non-Latino community members and service providers in rural, eastern North Carolina (ENC). Results Thematic analysis was used to identify common patterns and form recommendations for future research and programs. Themes common to Latino participants were: “We are put off to one side�; “If I can't work, I can't survive�; and “Without documents, you are no one.� Themes common to non-Latino participants were: “Older Latinos are not well served�; “Older Latinos are invisible�; “Older Latinos are undocumented and afraid�; and “Older Latinos are wandering the highway�. Conclusion A major finding of this research was the extent to which discrepancies in perceptions between Latino participants and non-Latino participants exist. These discrepancies revealed ethnic stereotyping and cultural insensitivity as major barriers in access to care.Open Access Fun

Factors Affecting Patient Portal Use Among Low-Income Pregnant Women: Mixed-Methods Pilot Study

Copyright ©Juhee Kim, Holly Mathews, Lindsay M Cortright, Xiaoming Zeng, Edward Newton. Originally published in JMIR Formative Research (http://formative.jmir.org), 22.03.2018. Licensed under a Creative Commons CC BY 4.0 license (https://creativecommons.org/licenses/by/4.0/).Background: Patient portals offer patients personalized and secure Web access to their medical information and enable patients to manage their health care online. However, there is a lack of information about patient acceptance and use of patient portals among low-income pregnant women. Objective: This formative research aims to assess the potential of a patient portal, MyChart, for improving prenatal health care and pregnancy outcomes, and identify the barriers and facilitators of MyChart use among low-income pregnant women. Methods: A mixed-methods study was conducted with a convenience sample of 18 low-income pregnant women comprising low- and high-risk patients enrolled in a prenatal clinic in eastern North Carolina. MyChart use, patient demographics, and pregnancy information were collected by reviewing electronic medical charts. Health literacy was measured. Reported use and attitudes toward MyChart were collected using a semi-structured interview. Results: Although 39% (7/18) of participants interviewed signed up for MyChart, only 22% (4/18) of them became active users. Another 33% (6/18) had never heard of MyChart or was unsure of how to access it. Users primarily accessed test results and appointment schedules. The main facilitating factors for patient portal use were information and motivation from health care providers and concerns about pregnancy due to a history of miscarriage. Reported barriers were lack of educational resources, lack of care provider encouragement, and technical difficulties possibly exacerbated by low health literacy. Participants also suggested improvements for MyChart, especially the provision of discussion-based support for pregnant women. Conclusions: The one-time verbal introduction of MyChart does not meet current patients’ needs. Data reveal the need for more consistent patient education and support programs, tailored to patients’ previous pregnancy histories. The clinic also needs to facilitate better provider-patient communication about the importance of MyChart use.ECU Open Access Publishing Support Fun

Deletions in VANGL1 are a risk factor for antibody-mediated kidney disease

We identify an intronic deletion in VANGL1 that predisposes to renal injury in high risk populations through a kidney-intrinsic process. Half of all SLE patients develop nephritis, yet the predisposing mechanisms to kidney damage remain poorly understood. There is limited evidence of genetic contribution to specific organ involvement in SLE.(1,2) We identify a large deletion in intron 7 of Van Gogh Like 1 (VANGL1), which associates with nephritis in SLE patients. The same deletion occurs at increased frequency in an indigenous population (Tiwi Islanders) with 10-fold higher rates of kidney disease compared with non-indigenous populations. Vangl1 hemizygosity in mice results in spontaneous IgA and IgG deposition within the glomerular mesangium in the absence of autoimmune nephritis. Serum transfer into B cell-deficient Vangl1(+/-) mice results in mesangial IgG deposition indicating that Ig deposits occur in a kidney-intrinsic fashion in the absence of Vangl1. These results suggest that Vangl1 acts in the kidney to prevent Ig deposits and its deficiency may trigger nephritis in individuals with SLE

The genetic architecture of the human cerebral cortex

The cerebral cortex underlies our complex cognitive capabilities, yet little is known about the specific genetic loci that influence human cortical structure. To identify genetic variants that affect cortical structure, we conducted a genome-wide association meta-analysis of brain magnetic resonance imaging data from 51,665 individuals. We analyzed the surface area and average thickness of the whole cortex and 34 regions with known functional specializations. We identified 199 significant loci and found significant enrichment for loci influencing total surface area within regulatory elements that are active during prenatal cortical development, supporting the radial unit hypothesis. Loci that affect regional surface area cluster near genes in Wnt signaling pathways, which influence progenitor expansion and areal identity. Variation in cortical structure is genetically correlated with cognitive function, Parkinson's disease, insomnia, depression, neuroticism, and attention deficit hyperactivity disorder

Impact of Optimized Breastfeeding on the Costs of Necrotizing Enterocolitis in Extremely Low Birthweight Infants

To estimate risk of NEC for ELBW infants as a function of preterm formula and maternal milk (MM) intake and calculate the impact of suboptimal feeding on NEC incidence and costs

Killing the Medical Self-help Tradition among African Americans: The Case of Lay Midwifery in North Carolina, 1912-1983

Laupus Library History Collections & the Department of Bioethics & Interdisciplinary Studies sponsor the History of Medicine Presentations as an educational service for the East Carolina University community. The Library hopes that the speakers and topics selected will promote a greater understanding of the historical and philosophical underpinnings of today's health care disciplines.Laupus Library History Collections & the Department of Bioethics & Interdisciplinary Studie

Anthropologies of Cancer in Transnational Worlds

Cancer is a transnational condition involving the unprecedented flow of health information, technologies, and people across national borders. Such movement raises questions about the nature of therapeutic citizenship, how and where structurally vulnerable populations obtain care, and the political geography of blame associated with this disease. This volume brings together cutting-edge anthropological research carried out across North and South America, Europe, Africa and Asia, representing low-, middle- and high-resource countries with a diversity of national health care systems. Contributors ethnographically map the varied nature of cancer experiences and articulate the multiplicity of meanings that survivorship, risk, charity and care entail. They explore institutional frameworks shaping local responses to cancer and underlying political forces and structural variables that frame individual experiences. Of particular concern is the need to interrogate underlying assumptions of research designs that may lead to the naturalizing of hidden agendas or intentions. Running throughout the chapters, moreover, are considerations of moral and ethical issues related to cancer treatment and research. Thematic emphases include the importance of local biologies in the framing of cancer diagnosis and treatment protocols, uncertainty and ambiguity in definitions of biosociality, shifting definitions of patienthood, and the sociality of care and support

Chapter 3 Anticipating Prevention

Cancer is a transnational condition involving the unprecedented flow of health information, technologies, and people across national borders. Such movement raises questions about the nature of therapeutic citizenship, how and where structurally vulnerable populations obtain care, and the political geography of blame associated with this disease. This volume brings together cutting-edge anthropological research carried out across North and South America, Europe, Africa and Asia, representing low-, middle- and high-resource countries with a diversity of national health care systems. Contributors ethnographically map the varied nature of cancer experiences and articulate the multiplicity of meanings that survivorship, risk, charity and care entail. They explore institutional frameworks shaping local responses to cancer and underlying political forces and structural variables that frame individual experiences. Of particular concern is the need to interrogate underlying assumptions of research designs that may lead to the naturalizing of hidden agendas or intentions. Running throughout the chapters, moreover, are considerations of moral and ethical issues related to cancer treatment and research. Thematic emphases include the importance of local biologies in the framing of cancer diagnosis and treatment protocols, uncertainty and ambiguity in definitions of biosociality, shifting definitions of patienthood, and the sociality of care and support