Participating in end-of-life decisions is life altering for adolescents with incurable cancer, their families, and their healthcare providers. However, no empirically developed and validated guidelines to assist patients, parents, and healthcare providers in making these decisions exist. The purpose of the work reported here was to use three sources (the findings of three studies on decision making in pediatric oncology, published literature, and recommendations from professional associations) to develop guidelines for end-of-life decision making in pediatric oncology. The study designs include a retrospective, descriptive design (Study 1); a prospective, descriptive design (Study 2); and a cross-sectional, descriptive design (Study 3). Settings for the pediatric oncology studies included a pediatric catastrophic illness research hospital located in the Midsouth (Studies 1 and 2); and that setting plus a children's hospital in Australia and one in Hong Kong (Study 3). Study samples included 39 guardians and 21 healthcare providers (Study 1); 52 parents, 10 adolescents, and 22 physicians (Study 2); and 43 parents (Study 3). All participants in the studies responded to six open-ended questions. A semantic content analysis technique was used to analyze all interview data. Four nurses independently coded each interview; interrater reliability per code ranged from 68% to 100% across studies. The most frequently reported influencing factors were "information on the health and disease status of the patient," "all curative options having been attempted," "trusting the healthcare team," and "feeling support from the healthcare provider." The agreement across studies regarding influencing factors provides the basis for the research-based guidelines for end-of-life decision making in pediatric oncology. The guidelines offer assistance with end-of-life decision making in a structured manner that can be formally evaluated and individualized to meet patient and family needs.

With therapeutic and supportive care options increasing in number and differing in nature in pediatric oncology, parents, patients, and healthcare providers are encountering multiple decision points during the course of treatment. Understanding the decision-making process experienced by the patient and parent will help healthcare professionals to better assist them and each other with the decision making and its aftermath. The purpose of this international feasibility study was to explore similarities and differences in decision making among parents in three countries. This study was guided by the descriptive-decision-theoretic model, which emphasizes the need to describe actual decision making before attempting to alter that process. Parents and patients were eligible for this descriptive cross-sectional design if they were at one of four decision points in treatment within, (a) 4 to 6 weeks of completing frontline therapeutic protocols and doing so without disease progression or recurrence, (b) 4 to 6 weeks of a confirmed disease progression that necessitated changing treatment plans, (c) 4 to 6 weeks of a first or second recurrence that followed a disease-and treatment-free period, or (d) 3 to 7 days of having made an end-of-life decision. Study participants responded to six openended interview questions used in previous decision making studies with similar purposes. Demographic data for patients and parents were also collected. The three settings included a pediatric cancer center in the United States, a pediatric hospital in Australia, and a general hospital in Hong Kong. A total of 47 families (42 parents and 9 patients) have been interviewed (20 at the U.S. setting; 13 in Australia; and 14 in Hong Kong). All transcribed interviews were coded by three raters using the content analysis techniques of Krippendorff (1980) and agreement ratings were 88% or higher. Codes were generated for each group by decision point and study site. Between 23 and 59 codes were generated for each group across the three sites. A shared code that is reported most frequently across groups and sites is &dquo;receiving information from a health care professional.&dquo; A major difference among the three sites is the parental interpretation of the concept-decision making by parents-with some parents at the Hong Kong site not understanding the option of their involvement with the decision making because they assume or prefer that the physician make the decisions. Parents at the other two sites do not have difficulty with the concept. Parents at the Australian site were more likely to consider alternative therapies. These findings will contribute to guidelines being developed to help healthcare providers understand and assist parents and patients with decisions that occur as part of the treatment for childhood cancer.

The causes and intensity of role-related stress experienced by paediatric oncology nurses, the nurses' ability to respond to the stressors, and the professional and personal consequences of those stressors for the nurses are issues of concern for administrators and staff. The concern evolves from the anticipated relationships among stressors, the ability to cope with role-related stressors, and the expected negative outcomes such as resignation. However, the relationships among these components have not been previously measured concurrently in paediatric oncology nurses. The primary purpose of this study was to test the complete stress-response sequence model in a sample of paediatric oncology nurses by obtaining concurrent measures of the model's individual components: nurses' stressors, reactions, mediators, and consequences. A total of 126 nurses completed six questionnaires (Stressor Scale for Paediatric Oncology Nurses, Perceived Stress Scale, Measure of Job Satisfaction, Organized Commitment Questionnaire, Group Cohesion Scale, and Intent to Leave) and a demographic sheet. The majority of participating nurses were married, worked full-time and had worked 5 or more years in oncology. Qualitative data were analysed using a semantic content analysis technique. Relationships among the components of the model were examined using a two-stage least squares technique. The components were only weakly associated and unable to explain significant variation in each other. The combined qualitative and quantitative data indicate that an important explanatory variable - role-related meaning - is missing in the content model.

Pediatric oncology nurses experience role-related stressors, some of which are inherent to the speciality, and their consequences. Despite these difficulties, nurses continue in the specialty. One variable that helps to explain their continued commitment is "meaning", or what pediatric oncology nurses find to be most significant and satisfying in their roles. One technique for determining meaning in a role is to inquire about the peak (significant and positive) and nadir (significant and negative) role-related experiences and the consequences of both kinds of experiences. The purpose of this study was to identify the peak and nadir experiences of pediatric oncology nurses and the short- and long-term consequences of those experiences. Using an interview format that consisted of four open-ended questions and a convenience sampling plan, five nurses interviewed 26 nurses from one pediatric cancer center and 38 nurses from a national sample. The interviewers completed an initial training session on interviewing and repeated that training two more times during data collection. Written or taped oral consent was obtained at the time of each interview. Using a content analytical technique (Krippendorff, 1980), four nurses independently coded each interview. Agreement ratings ranged from 75% to 100% per coded theme for an overall agreement level of 92%. Training for the coding process occurred initially and periodically throughout the analysis period. Fifteen different themes for peak experiences were identified, the majority of which reflect the nurses' experience with patients dying, or with patients recovering and living normal lives, or with the close relationships that develop between nurses and patients. Multiple short- and long-term consequences were identified and included changes in (1) values (becoming less judgmental), (2) behaviors (giving more empathic care), and (3) perspective (accepting limitations of care). Twenty-three different nadir themes were identified. A shared characteristic of several of these themes is the nurses' regret over a perceived inadequacy in handling a situation. Another common element is witnessing patient suffering and feeling unable to adequately relieve the suffering or provide comfort to the patient. The short-term consequences of nadir experiences tend to be negative and include guilt, anger, or dread. The long-term consequences tend to be positive and similar to the long-term consequences of peak experiences. Study findings indicate that pediatric oncology nurses do find meaning in their roles and that those who continue in the speciality are able to experience positive long-term consequences. Study findings will be used to develop a new scale to measure role-related meaning and to develop interventions designed to assist nurses in finding meaning in their roles even during particularly stressful periods.

The Association of Pediatric Oncology Nurses (APON) recently sponsored a two-wave Delphi study to identify the most important research priorities for pediatric oncology nursing. Seventy-five research priorities were rated for importance by 227 APON members. The majority of these members were inpatient or ambulatory care nurses who had been in pediatric oncology more than 25 months. The top 10 research priorities were primarily about nursing procedures and psychosocial care needs of patients and families. The top priority was to "measure the quality of life and late effects of treatment in long-term survivors of childhood cancer." Study findings will be used to encourage researchers to conduct research on these priorities and to encourage funding organizations to support research related to these priorities.