Sharon L. Sims

Living at Risk: Concealing Risk and Preserving Hope in Huntington Disease

Much of the qualitative research on Huntington disease has focused on the genetic testing aspects of HD. The overall purpose of this qualitative study was to gather information about the everyday experience of living with the risk of developing Huntington disease in a sample of individuals at risk for HD who have chosen not to pursue genetic testing. Data for this article was obtained from unstructured, open-ended qualitative interviews of a sample of people participating in the PHAROS study. PHAROS, the Prospective Huntington At-Risk Observational Study, is a multi-site study that aims to establish whether experienced clinicians can reliably determine the earliest clinical symptoms of Huntington disease in individuals at 50% risk for HD who have chosen not to undergo genetic testing. Interviews were conducted at six PHAROS research sites across the United States. In this paper, the research team used qualitative description to construct and explore two main themes: (1) careful concealment of risk as an act of self-preservation and (2) preserving hope.

Toward a narrative-centered curriculum for nurse practitioners.

This paper discusses various alternative and nontraditional teaching strategies currently used in nurse practitioner curricula. These instructional strategies include case-study analysis (Ryan-Wenger & Lee, 1997) and problem-based learning/practice-based learning (Barrows, 1994). We suggest a further evolution, using principles and practices of a narrative pedagogy (Diekelmann, 1995) to allow convergence of these several narratively-focused inductive and interpretive approaches. This combination of ways of learning has led us toward a narrative-centered curriculum for family nurse practitioners (FNPs). Specific ways to use narrative in the FNP curriculum are presented to demonstrate how to take the curriculum beyond traditional ways of teaching and learning.

Decision Making in Home Health Care

As caregivers take control of their newly chaotic lives, they become more active and assertive in decision making and, not coincidentally, better caregivers. Future research and nursing interventions should focus on this process of taking charge to make our support of home care providers more meaningful and useful. Another issue needing further exploration is the preponderance of female caregivers, regardless of the age or relationship of the care recipient. As Anderson and Elfert (1989) pointed out, health professionals often emphasize the concept of family when discussing home health care, but in fact, it is almost always the women who assume the burden. They argue that this results in a devaluation of the work done in home care, as it is not reimbursed. Perhaps our belief that home care is less costly should be reexamined, both in terms of monetary and nonmonetary costs.

What Were You Thinking?: Individuals at Risk for Huntington Disease Talk About Having Children

Most of the research on reproduction in those at risk for Huntington Disease (HD) has focused on the impact of genetic testing on reproductive decision-making. The main goal has been to determine whether discovering one is a carrier of the HD mutation changes an individual’s or couple’s decision to start a family or to have more children. The purpose of this qualitative study was to examine reproductive decision-making in a sample of individuals at risk for HD who have chosen not to pursue genetic testing. PHAROS (Prospective Huntington At Risk Observational Study) is a multi-site study that aims to establish whether experienced clinicians can reliably determine the earliest clinical symptoms of HD in a sample of individuals at 50% risk who have chosen not to pursue genetic testing. Data for this article were obtained from unstructured open ended qualitative interviews of a subsample of individuals participating in the PHAROS project. Interviews were conducted at six PHAROS research sites across the United States. In this paper, the research team used qualitative descriptive methods to construct and explore reproduction decision-making in three groups of people: 1) those who knew of their risk and decided to have children; 2) those who had children before they knew of their risk, and 3) those who chose not to have children based on their risk. We discuss the delicate balance health care professionals and genetic counselors must maintain between the benefits of providing hope and the dangers of offering unrealistic expectations about the time in which scientific advances actually may occur.

A comprehensive approach to faculty evaluation.

The purpose of this undertaking was to design a comprehensive faculty evaluation instrument that would reflect the complexities of the faculty role. An 80-item instrument was designed from a review of the literature, content analyses on job descriptions, existing evaluation tools. Items were modified on the basis of critical review by educators with expertise and experience in evaluation measurement and faculty role expectations. Instrument design incorporates the need for explicit criteria; flexibility in establishing performance standards and expectations; involvement of students, peers, administrators and self in the evaluation process; and greater consistency of judgments. When used in conjunction with a computerized data management package, this instrument provides a variety of information needed to make well-informed decisions regarding faculty development, promotion, retention and tenure of faculty members, and optimum utilization of faculty talents. Each schools faculty establishes standards of performance expectations according to its values, capitalizing on the unique nature of the proposed evaluation instrument.

Enacting Narrative Pedagogy

Abstract Reforming nursing education to meet contemporary challenges in educational and clinical environments is needed through the development and implementation of new pedagogies. Nancy Diekelmann is advancing the science of nursing education by describing a new phenomenological pedagogy, Narrative Pedagogy, identified through interpretive research in nursing education. Narrative Pedagogy is an approach to reforming nursing education that is always site specific and not generalizable from school to school. However, the processes of Narrative Pedagogy are transferable and can be enacted in many contexts. This study describes the common experiences and shared meanings of teachers and students engaging in or enacting Narrative Pedagogy. Diekelmann gathered seven teachers and students in five schools of nursing in four midwestern states to share their experiences. Interpretive phenomenology was used to analyze the group interview. One of the findings identified during this analysis, Enacting Narrative Pedag...

Changing Women: Mothers and Their Adolescent Daughters

Budding fecundity in the female child is a matter of family concern. The authors used the grounded theory method to explore the process of communication between mothers and their adolescent daughters concerning sexuality issues within the context of the age changes of both. A core category of changing women was identified along with three maternal and three daughter processes. Changes that occur during this time period can lead to lasting separation between the pair if they fail to develop insight as a way of protecting themselves and one another. The findings may assist health professionals to understand these changes and facilitate the process of communication in these dyads.