Barbara M. Raudonis

Ethical Considerations in Qualitative Research with Hospice Patients

As scientific and medical advances propel the world toward the 21st century, ethical concerns have become an integral part of health care. The protection of human rights is mandated in health care research. The increasing use of qualitative research methods, however, high-lights ethical issues and concerns related to the research process, and these take on new meaning in the context of qualitative research. This article addresses three ethical issues in qualitative research with hospice patients. Examples taken from a naturalistic nursing study of the hospice patients perspective of empathy describe one researchers experience with those ethical issues.

The HPNA research agenda for 2009-2012

The research committee of the Hospice and Palliative Nurses Association engaged in an iterative process to develop a research agenda for the association that is expected to provide a focus for graduate students and junior and senior researchers and guide our organizations research funding. In addition, this agenda will illustrate to stakeholders the importance of these research foci. The focus of this article is twofold: to describe the process for developing the agenda and describe the agenda itself with rationale for the foci.

Hospice research: The importance of program participation

Hospice research is needed in order to understand the complex phenomena of holistic carefor terminally ill persons and their families. Hospice program participation is key to future hospice research efforts. The purpose of this article is to encourage hospice programs to participate in hospice research. The discussion includes why research is done, who undertakes a research project, the role of institutional review boards in assuring rights of human subjects and potential strategies for recruitment of research subjects. The authors use their experiences with conducting hospice research to illustrate potential recruitment strategies.

A Pilot Study of Proinflammatory Cytokines and Fatigue in Women With Breast Cancer During Chemotherapy.

Background: Fatigue remains a prevalent, persistent, and debilitating side effect of chemotherapy for stage I and II breast cancer patients. Severity of fatigue varies among patients. Evidence suggests that proinflammatory cytokines contribute to the development of fatigue. Objective: The aim of this study is to investigate predictors of fatigue and cytokine levels in women undergoing chemotherapy for stage I or II breast cancer. Methods: Piper Fatigue Scales and blood samples for interleukin-6 (IL-6) and tumor necrosis factor-&agr; (TNF-&agr;) levels were collected at baseline and days 7, 14, and 21 for each chemotherapy cycle. Descriptive statistics, general linear mixed models, and graphic analysis were used to analyze the data. Results: The predominantly white convenience sample was composed of 11 women with stage I or II breast cancer who were 37 to 72 years old (mean, 52 years). Predictors of fatigue were type of chemotherapy drugs, time, and IL-6 levels. A predictor of IL-6 and TNF-&agr; levels was whether chemotherapy was administered at the visit. Type of chemotherapy significantly predicted TNF-&agr; levels. Fatigue patterns were characterized by chaotic pattern of peaks and troughs unique to each woman. Conclusions: Women with stage I and II breast cancer experienced variability in the severity of fatigue and levels of IL-6 and TNF-&agr; throughout their treatment trajectories. The presence and role of genetic variants related to cancer-related fatigue may explain the individual variation and warrant further research. Implications for Practice: These findings highlight the importance of symptom assessments including fatigue at each clinic visit and individualized interventions throughout the cancer trajectory.

Hospice and Palliative Nurses Association 2015-2018 research agenda

Hospice and palliative nursing care occurs in most practice settings, at all stages of chronic illness, and for persons of all ages. Thus, the Hospice and Palliative Nurses Association (HPNA) seeks to provide direction for research by highlighting key gaps in knowledge that serve as barriers to excellent care. The 2015-2018 HPNA Research is designed to (1) provide a focus for graduate students and researchers, (2) guide research funding by the Hospice and Palliative Nurses Foundation, and (3) illustrate to other stakeholders the importance of these research foci. The agenda also begins to outline a procedure for HPNA development and endorsement of clinical practice guidelines. The resulting document has been developed for all HPNA members regardless of role: clinical, academic, or research. Hospice and Palliative Nurses Association members were asked to select from among the 8 domains of the National Consensus Project which domain encompassed the most pressing gaps in knowledge. The 2 most frequently selected domains were (1) structure and processes of care and (2) physical aspects of care. The third component of this agenda, also member driven, will focus on the process of research translation in palliative nursing. While all research in palliative care is important to patients, the 2015-2018 HPNA Research Agenda identifies specific target areas to bring focus to research efforts and highlights the importance of research translation.

Pilot Trial of an Electronic Family Medical History in US Faith-Based Communities

In spite of the acknowledged importance of collecting family health information, methods of collecting, organizing, and storage of pedigree data are not uniformly utilized in practice, though several electronic tools have been developed for the purpose. Using electronic tools to gather health information may empower individuals to take responsibility in managing their family health history. The purpose of this study was to describe the feasibility and outcomes of introducing small groups to the My Family Health Portrait tool in faith-based communities using faith community nurses (FCNs). This pilot project adopted a mixed methods approach to assess the potential of an educational intervention delivered by FCNs for increasing the use of electronic technologies for organizing and storing family health histories among the general public. Treatment and control groups were recruited from four faith-based communities in north Texas using a parallel-groups quasi-experimental design. Qualitative data were gleaned from field notes made by investigators interacting with FCNs and observing their teaching. A majority of respondents believed that knowing one’s health history and passing it on to family and medical personnel is important. Those receiving face-to-face instruction on the electronic tool were significantly more likely to have written down family health information than the control group who received only an informational handout (χ2 = 5.96, P = .015). Barriers to teaching about and using the electronic tool included FCNs’ lack of facility with computers in the educational context and FCN and respondent mistrust of electronic storage for family health information.

Palliative care in the genomic era

The sequencing of the human genome was completed in 2003. This scientific accomplishment has implications for improving healthcare including palliative care. Have you wondered why certain diseases are more prevalent in some family members and not others? Why does morphine provide therapeutic relief of pain for some patients and not others with the same disease? Why should an individual diagnosed with Huntington disease receive palliative care at the time of diagnosis? How is a complete family health history and three-generation pedigree useful to hospice and palliative care nurses? All of these questions have the common thread of genetic and genomic factors that influence health. The purpose of this article was to update hospice and palliative care nurses on selected aspects in genetics and genomics that impact palliative care and provide resources such as the US Surgeon Generals Family History Initiative including the online assessment program that results in an organized family pedigree. The selected topics are pharmacogenomics of morphine, family history, and palliative care for persons with genetic disorders.

Palliative Care Update for Gastroenterology Nurses

Changing demographics, specifically an aging population associated with an increase of chronic and terminal illness, have highlighted the need for palliative or comfort care in nursing from the time of diagnosis through the dying process. Palliative or comfort care is now on the national healthcare agenda. The purpose of this article is to provide an update on selected palliative care and end-of-life issues and resources related to practice, education, research, and policy for gastroenterology nurses. In addition, selecting one of the suggested resources to review on a regular basis will provide the reader with a strategy for keeping up-to-date in palliative and end-of-life care.