Key factors affecting dying children and their families.

The death of a child alters the life and health of others immediately and for the rest of their lives. How a child dies influences parents' abilities to continue their role functions as well as siblings' abilities to make and maintain friendships, and may be the basis for health care providers' decisions to exit direct care roles. Thus, facilitating a "good death"-an obvious care priority for all involved with the dying child-ought also to be a priority for the health of bereaved families and affected health care providers. Making this a care priority is complicated by a serious lack of data, as details of the last hours or weeks of a dying child or adolescent's life are largely unknown. The purpose of this paper is to identify key factors that affect the course of dying children and adolescents and that of their bereaved survivors, and to link those key factors to needed research that could produce clinically relevant findings to improve the care of these patients. Key factors described here include suffering (physical, psychological, and spiritual), communication, decision making, prognostic ambiguities, ability of the seriously ill child to give assent to research participation, and educational preparation of health care providers to give competent end-of-life care.

The nurse's relationship-based perceptions of patient quality of life.

PURPOSE/OBJECTIVES: To explore patients' quality of life (QOL) as defined by RNs in adult and pediatric oncology settings and to examine, from the perspectives of clinical nurses, the knowledge that is needed to apply QOL research outcomes in clinical practice. DESIGN: Qualitative research design using a focus group technique to explore the research questions. SETTING: Three sites (i.e., a pediatric research center in western Tennessee and oncology nurses from a chapter of the Oncology Nursing Society [ONS] in Central Florida and another in upstate New York). SAMPLE: 24 oncology nurses working with adult or pediatric patients or both. METHODS: Oncology nurses were approached at work or through their local ONS chapters for a focus group discussion. FINDINGS: 47 unique themes were reported by all five focus groups in response to three questions. The most frequently reported themes were (a) Using the Patient's Standard, (b) Nursing Strategies, (c) Differences Decrease QOL Care, (d) Maintaining Social Interests, (e) Insightful Relations With Patient, and (f) Nurse-Patient Communication. CONCLUSIONS: Nurses' assessments of QOL primarily are based on their established relationships with their patients. From these relationships, nurses derive perceptions of patients' QOL and clinical direction for interventions to positively influence QOL. Based on these findings, the investigators developed a conceptual model of the nurses' relationship-based perceptions of patients' QOL. IMPLICATIONS FOR NURSING: The current QOL measures have minimal importance to nurse clinicians. Because nurse clinicians rely on their relationships with patients to assess QOL, available tools should be made more clinically useful. Further research should be conducted using the new conceptual model, specifically to learn more about how nurses complete a QOL assessment within the context of the nurse-patient relationship.

Is clinical relevance sometimes lost in summative scores?

It is possible to have a reliable and valid measure of a clinical phenomenon but to score the measure in a way that inaccurately represents the clinical meaning of the measured phenomenon. The purpose of this article is to demonstrate the risk to research and clinical assessments caused by a discrepancy in the clinical meaning of scores obtained by total scale scoring and those obtained by individual item scoring. The clinical phenomenon that is used in this demonstration is symptom distress as measured by the Symptom Distress Scale (SDS). In this example, the discrepancy in meaning between total scale scores and the individual item scores of the SDS has potential clinical implications as more than 30% of participating adolescent patients at each of four time points spanning a 6-month time period would have been inaccurately assessed when the assessment was based on the total scale score.