Janet L. Stewart

Helping patients with localized prostate carcinoma manage uncertainty and treatment side effects: nurse-delivered psychoeducational intervention over the telephone.

The objective of this study was to test the efficacy of an individualized uncertainty management intervention delivered by telephone to Caucasian and African‐American men with localized prostate carcinoma and directed at managing the uncertainties of their disease and treatment.

Triggers of uncertainty about recurrence and long-term treatment side effects in older African American and Caucasian breast cancer survivors.

PURPOSE/OBJECTIVES To examine the sources of uncertainty in older African American and Caucasian long-term breast cancer survivors by focusing on frequency of triggers of uncertainty about cancer recurrence and physical symptoms linked to long-term treatment side effects. DESIGN In the context of a larger randomized, controlled treatment-outcome study, data were gathered from 10 monthly follow-up telephone calls by nurses. SETTING Rural and urban regions of North Carolina. SAMPLE 244 older women (mean age = 64 years); 73 African American women and 171 Caucasian women who were five to nine years after breast cancer diagnosis. FINDINGS The most frequent triggers were hearing about someone elses cancer and new aches and pains. The most frequent symptoms were fatigue, joint stiffness, and pain. Although no ethnic differences occurred in the experience of symptoms, Caucasian women were more likely than African American women to report that their fears of recurrence were triggered by hearing about someone elses cancer, environmental triggers, and information or controversy about breast cancer discussed in the media. CONCLUSIONS Illness uncertainty persisted long after cancer diagnosis and treatment, with most women experiencing multiple triggers of uncertainty about recurrence and a range of symptoms and treatment side effects. IMPLICATIONS FOR NURSING Nurses can help cancer survivors to identify, monitor, and manage illness uncertainty and emotional distress.

Uncertainty intervention for watchful waiting in prostate cancer.

Watchful waiting is a reasonable alternative to treatment for some older men with localized prostate cancer, but it inevitably brings uncertainty. This study tested the effectiveness of the watchful waiting intervention (WWI) in helping men cognitively reframe and manage the uncertainty of watchful waiting. Based on Mishels Reconceptualized Uncertainty in Illness Theory (Image. 1990; 256–262), the WWI was tested with a convenience sample of 41 men. Experimental subjects received 5 weekly intervention calls from a nurse. Control subjects received usual care. Outcomes were new view of life, mood state, quality of life, and cognitive reframing. Repeated measures of analysis of variance were used to test the effectiveness of the WWI. The sample was 86% Caucasian and 14% African American, with an average age of 75.4 years. Intervention subjects were significantly more likely than controls to view their lives in a new light (P = .02) and experience a decrease in confusion (P = .04) following the intervention. Additionally, intervention subjects reported greater improvement in their quality of life than did controls (P = .01) and believed their quality of life in the future would be better than did controls (P = .01). This studys findings document the benefits of the WWI for patients living with uncertainty.

Moderators of an uncertainty management intervention: for men with localized prostate cancer.

BackgroundThe effectiveness of psycho-educational interventions for cancer patients is well documented, but less is known about moderating characteristics that determine which subgroups of patients are most likely to benefit. ObjectivesThe aim of this study was to determine whether certain individual characteristics of African-American and White men with localized prostate cancer moderated the effects of a psycho-educational Uncertainty Management Intervention on the outcomes of cancer knowledge and patient-provider communication. MethodsMen were blocked by ethnicity and randomly assigned to one of three conditions: Uncertainty Management Intervention provided to the patient only, Uncertainty Management Intervention supplemented by delivery to the patient and family member, or usual care. The individual characteristics explored were education, sources for information, and intrinsic and extrinsic religiosity. ResultsUsing repeated measures multivariate analysis of variance, findings indicated that there were no significant moderator effects for intrinsic religiosity on any of the outcomes. Lower level of education was a significant moderator for improvement in cancer knowledge. For the outcome of patient-provider communication, fewer sources for cancer information was a significant moderator for the amount told the patient by the nurse and other staff. Less extrinsic religiosity was a significant moderator for three areas of patient provider communication. The three areas are the amount (a) the physician tells the patient; (b) the patient helps with planning treatment; and (c) the patient tells the physician. ConclusionsTesting for moderator effects provides important information regarding beneficiaries of interventions. In the current study, men’s levels of education, amount of sources for information, and extrinsic religiosity influenced the efficacy of the Uncertainty Management Intervention on important outcomes.

Test of a conceptual model of uncertainty in children and adolescents with cancer

Despite recognition as a significant stressor in childhood cancer, illness-related uncertainty from the perspective of children remains under-studied. We tested a conceptual model of uncertainty, derived from Mishels uncertainty in illness theory, in 68 school-aged children and adolescents with cancer. As hypothesized, uncertainty was significantly related to psychological distress, but only one hypothesized antecedent (parental uncertainty) significantly predicted childrens uncertainty. An alternative model incorporating antecedent developmental factors (age and illness-specific expertise) explained 21% of the variance in child uncertainty; controlling for stage of treatment, uncertainty was higher in children with shorter time since diagnosis, older age, lower cancer knowledge, and higher parental uncertainty. These findings provide the foundation for further studies to understand childrens management of uncertainty and its contribution to psychological adjustment to illness.

Evaluating content validity for children's self-report instruments using children as content experts.

Background: The development and evaluation of instruments to index cognitive and emotional processes from the perspectives of children is a priority for pediatric nursing research. Objective: To describe the procedures used in employing children as content validity experts in the development of a self-report instrument. Methods: Following published recommendations for moving from qualitative research to quantitative measurement with adults and for maximizing content validity in self-report instruments, six children aged 8-16 years undergoing treatment for cancer constituted the panel of content experts for review of a measure of childrens illness-related uncertainty derived from qualitative interviews. Children were provided with an explanation of the project, an explanation of their role as experts, and explicit instructions on how to evaluate the representativeness of individual items and the total scale. Results: Generally, the children performed the review tasks effectively, although two children (ages 8 and 16 years) had initial difficulty in going beyond their own experience when considering the relevance of individual items. Twenty items were deemed acceptable by at least five out of the six children and two additional items were revised based on their input. Discussion: Employing children as content validity experts adds a critical dimension to establishing psychometrically sound measures for studying the processes affecting the health of children and families.

Psychometric evaluation of a new instrument to measure uncertainty in children and adolescents with cancer.

Background:Although uncertainty has been characterized as a major stressor for children and adolescents with cancer, it has not been studied systematically. Objectives:The objective of this study was to describe the development and initial psychometric evaluation of a measure of uncertainty in school-aged children and adolescents with cancer. Methods:Interview data from the first authors qualitative study of uncertainty in children undergoing cancer treatment (Stewart, 2003) were used to generate 22 items for the Uncertainty Scale for Kids (USK), which were evaluated for content validity by expert panels of children with cancer and experienced clinicians (Stewart, Lynn, & Mishel, 2005). Reliability and validity were evaluated in a sample of 72 children aged 8 to 17 years undergoing cancer treatment. Results:The USK items underwent minor revision following input from content validity experts, and all 22 were retained for testing. The USK demonstrated strong reliability (Cronbachs &agr; = .94, test-retest r = .64, p = .005), and preliminary evidence for validity was supported by significant associations between USK scores and cancer knowledge, complexity of treatment, and anxiety and depression. Exploratory factor analysis yielded two factors, not knowing how serious the illness is and not knowing what will happen when, which explained 50.4% of the variance. Discussion:The USK, developed from the perspective of children, performed well in the initial application, demonstrating strong reliability and preliminary evidence for construct and discriminant validity. It holds considerable promise for moving the research forward on uncertainty in childhood cancer.

Moving the Research Agenda Forward for Children and Adolescents With Cancer

The articles in this volume reflect the content of the August 2003 working group, “Moving the Research Agenda Forward for Children with Cancer.” Taken together they illustrate participants’ views that pediatric cancer research must focus on the child’s entire life course and not on discrete events such as diagnosis, treatment, cure, or death. In this view, developing the science is equally critical for all aspects of care for the child or adolescent with cancer and the family. The needs of each member of the affected families and the human connections linking the patient and family to the broader community and other social networks are the central values underlying a research agenda based on the life course perspective. At the conclusion of the working group, participants used the content to attempt a broad view of the field of pediatric oncology research while remaining mindful of the biobehavioral and sociocultural themes that dominated the presentations. Through written exercises and verbal brainstorming, participants identified major challenges and opportunities associated with the research topics discussed. This conclusion documents the major points shared at that time, in particular those that deal with approaches to carrying out this evolving research agenda. Again, it must be noted that these points are not those of NINR, other NIH Institutes, or other organizations. Instead, these points are the result of the synergy created in the working group environment.

Dusting Off That Old Proposal: How to Survive in the Land of Research

Pediatric oncology nursing would benefit from more research directed toward questions that relate to the care of children with cancer. There are many ideas and proposals that are begun but never carried to fruition. This article will detail how to assess and rework a research proposal to provide the basis for a research project that will add to the scientific knowledge of nursing care of children with cancer.