Barbara Burns McGrath

Family history of diabetes as a potential public health tool

Given the substantial morbidity and mortality associated with type 2 diabetes, it is important that public health seek ways to delay or prevent the onset of this condition. Risk factors for type 2 diabetes are well established and include underlying genetic susceptibility. Despite this knowledge, as well as significant advances in understanding the human genome, the prevalence of type 2 diabetes continues to rise at an alarming rate. Because type 2 diabetes is a complex condition involving a combination of genetic and environmental factors, DNA testing for susceptibility genes is not yet warranted. However, because family history reflects genetic susceptibility in addition to other factors, it may be a useful public health tool for disease prevention. When evaluating family history as a public health tool, several important issues need to be considered, including the analytic and clinical validity and the clinical utility of using family history as a screening tool. These issues as well as a review of the epidemiologic evidence evaluating family history as a risk factor will be reviewed.Overall, a family history approach appears to be a promising new public health tool to fight the growing epidemic of diabetes in the United States. Adequate levels of funding to further evaluate this approach and to develop appropriate tools should be made available for research activities focused on this important area.

Health Care Transitions Among Youth With Disabilities or Special Health Care Needs: An Ecological Approach

This literature review of 46 articles uses the ecological model as a framework for organizing concepts and themes related to health care transition among youth with disabilities or special health care needs (SHCN). Transition involves interactions in immediate and distal environmental systems. Important interactions in immediate environments include those with family members, health care providers, and peers. Activities in distal systems include policies at the governmental and health system levels. The ecological model can help researchers and practitioners to design experimental interventions in multiple settings that ensure smooth transitions and support the well-being of youth with disabilities or SHCN.

Perspectives on provider behaviors: A qualitative study of sexual and gender minorities regarding quality of care

Abstract Lesbian, gay, bisexual, transgender, and queer (LGBTQ) identified patients report receiving substandard care from healthcare providers. They face the fear and disturbing reality of discrimination when accessing health care. Without culturally sensitive treatment, nursing and other health professions do not properly care for this population. Following the recent trend towards awareness and need for inclusion of LGBTQ populations in healthcare, this paper provides a summary of the current literature on the treatment and needs of LGBTQ people and describes focus groups conducted to explore perceptions regarding provider behaviors. It concludes with a list of behaviors that enhance or impede quality care that can serve as a guide for healthcare professionals.

Illness as a problem of meaning: moving culture from the classroom to the clinic.

The concept of culture is used as a means to understand illness knowledge and behavior. Recently the concept has been subject to critique by those who question its usefulness in a modern world. Clearly the time is ripe for a renewed look at how the concept of culture is presented to, and utilized by, health professionals. I suggest a perspective that bridges anthropologic theory and clinical application, and examine illness as a problem of meaning. Clinical examples illustrate ways the concept can be applied in a nondominating manner.

When family means more (or less) than genetics: the intersection of culture, family and genomics.

There is renewed interest in the use of family history to predict individual disease susceptibility, and as a result, standardized online family history tools are being developed and marketed as a “new genetic test.” It is not known how cultural variations in definitions of family influence collection of these data or what is the best format to use. This is significant given that the populations who carry the greatest burden of the target diseases have not been considered in efforts to test these tools. A qualitative study with a convenience sample of 19 Japanese Americans and Samoan Americans, two groups at high risk for type 2 diabetes, was conducted to explore the process of collecting family history. A particularly strong finding was the high degree of acceptance experienced by the participants with the process and their pride in visualizing their family graphically displayed in pedigrees. It was also found that Samoans included those linked by nonbiological ties in their families, which reflects their cultural practices. Further research is needed to assess the most effective and efficient way to gather family history given the complexities surrounding the deceptively simple concept of family.

The stewardship model: current viability for genetic biobank practice development.

The “stewardship model” of ethics relationships is a conceptual framework initially proposed by Jeffers in Advances in Nursing Science, 24(2), 2001. It conceptualized ethical responsibilities in the practice of systematic collection and storage of biospecimens in biobanks for future healthcare genetic research. Since the articles publication 8 years ago, genetic biobanks have grown in number around the world and discernible biobank relational conceptualizations were published. Nursing leadership adopted competency standards for all genetic nursing practices. The involvement of nurses has increased and is projected for further significant increase as biobank practices emerge from research into clinical care settings. This assessment of current viability of this previously established stewardship model offers fresh insights to existing and future nursing research and practice. The purpose of this article was to analyze the original stewardship models components, the relational parties, and characteristics; by contrasting those with proposed conceptualizations and existing biobank practices developed subsequent to its publication. The models current viability and theoretical development status are assessed for its ability to support a future nursing evidence base for best practices. Proposals for the models expansion are suggested.

A view from the other side: The place of spirits in the Tongan social field

Spirits are part of everyday life in the Kingdom of Tonga. This study explores beliefs about the supernatural by analyzing discourse on spirits and death and by examining two examples of contemporary cultural practice related to spirits and death. The anthropological concepts of the body and its cultural construction and of thirdspace as a landscape of the Tongan islands that emerges out of the physical and the perceived provide the framework for this investigation. Research findings suggest that spirits participate in the natural order of Tongan society and thus serve to help maintain cultural identity in the face of uncertain social change and a popular but contested prodemocracy movement. Spirits also function as a system of representation, mirroring an image of an ideal self, something that is continually under negotiation. Encounters between spirits of ancestors and their living descendants suggest an uneasy acceptance of death and a sense of irony about its inevitability.

A journey of suffering: living with amyotrophic lateral sclerosis in South Korea.

ABSTRACT Amyotrophic lateral sclerosis presents significant challenges for patients because of the devastating disease characteristics and the fact that there is no treatment available. In this article, we explored the illness experiences from the perspectives of patients with amyotrophic lateral sclerosis in the sociocultural context of South Korea. Fifteen patients were observed and interviewed between September 2009 and July 2010 in the metropolitan area of South Korea. We used an ethnographic approach for data collection and analysis. The meta-theme generated was “a journey of suffering,” and three themes emerged: (a) off the course, (b) drifting, and (c) on a new boat. Participants experienced multidimensional suffering as the disease progressed. Healthcare professionals should understand that, for many patients, this disease is a process or a series of experiences rather than a single diagnosis. This knowledge would allow healthcare providers to help patients prepare for those needs that arise as the disease worsens.