Melinda M. Swenson

Clinical prevention and population health: Curriculum framework for health professions

Abstract The Clinical Prevention and Population Health Curriculum Framework is the initial product of the Healthy People Curriculum Task Force convened by the Association of Teachers of Preventive Medicine and the Association of Academic Health Centers. The Task Force includes representatives of allopathic and osteopathic medicine, nursing and nurse practitioners, dentistry, pharmacy, and physician assistants. The Task Force aims to accomplish the Healthy People 2010 goal of increasing the prevention content of clinical health professional education. The Curriculum Framework provides a structure for organizing curriculum, monitoring curriculum, and communicating within and among professions. The Framework contains four components: evidence base for practice, clinical preventive services–health promotion, health systems and health policy, and community aspects of practice. The full Framework includes 19 domains. The title “Clinical Prevention and Population Health” has been carefully chosen to include both individual- and population-oriented prevention efforts. It is recommended that all participating clinical health professions use this title when referring to this area of curriculum. The Task Force recommends that each profession systematically determine whether appropriate items in the Curriculum Framework are included in its standardized examinations for licensure and certification and for program accreditation.

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.

Quality of life after among ovarian germ cell cancer survivors: a narrative analysis.

PURPOSE/OBJECTIVES To describe and interpret the meaning of experiences that are important to the quality of living of ovarian germ cell cancer survivors. RESEARCH APPROACH Qualitative description within a constructivist paradigm. SETTING 32 member sites of the Gynecologic Oncology Group and the University of Texas M.D. Anderson Cancer Center in Houston. PARTICIPANTS 109 women between the ages of 19-64 (median age = 36) who were enrolled on prospective clinical trials of cisplatin-based chemotherapy after surgery and disease-free for at least two years. METHODOLOGIC APPROACH As part of a larger study, narrative responses to four semistructured questions were collected at the end of a telephone interview. Using naturalistic inquiry and qualitative description techniques, content labels were assigned to units of text that seemed to encapsulate one complete thought or idea. The labeled groups were collapsed into interpreted subthemes. Finally, four general themes were constructed as representations of shared narrative responses and meanings. FINDINGS The four constructed themes are celebrating illness, experiencing empathetic affirmation, mourning losses, and valuing illness. INTERPRETATION In addition to measuring physical, psychological, and sexual functioning in women surviving ovarian germ cell cancer, nurses also must understand how these issues fit into their everyday lived experiences. The four themes may help clinicians and researchers to understand issues that are important to the quality of living of ovarian germ cell cancer survivors.

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.

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...

Why do adolescents with type 1 diabetes and their parents participate in focus groups

Almost all patient-centered research is dependent on voluntary participation by participants. Many forces, however, act to either encourage or inhibit people from deciding to participate. This study explored adolescents’ with Type 1 diabetes and their parents’ reasons for participating in a research study. We recruited adolescents with type 1 diabetes mellitus and their parents to participate in a focus group study. Qualitative analysis of the focus group data followed a set procedure: (a) audio review, (b) reading through transcriptions, (c) discussions among investigators regarding key elements of participants’ perceptions, (d) determination of conceptual themes, and (e) assignment of relevant responses to appropriate thematic constructs. The 10 focus groups involved 59 participants. The three major themes that developed were giving and receiving, desire for peer socialization, and need for validation. Themes captured the reasons adolescents with type 1 diabetes and their parents decided to participate in this research. A better understanding of why people participate in research may help us to meet their needs and desires more completely. Designing research to meet these reasons will have the dual affect of increasing participation while also better serving those who choose to be studied.