Hypothesis generation for childhood cancer communication research: results of a secondary analysis.

Secondary analysis of existing qualitative datasets offers an opportunity to efficiently use these difficult-to-collect data to generate hypotheses for future research and expand understanding of the phenomena under study. We conducted a retrospective interpretation of two qualitative datasets regarding childhood cancer treatment decision making to elaborate themes regarding parents' cancer communication (information sharing and involvement of their children in treatment decision making) that were not fully developed in the original analyses. We identified broad variability in parents' cancer communication that was not entirely dependent upon the age of their ill child. We were able to generate multiple hypotheses to help guide our future research.

Making the right decision for my child with cancer: the parental imperative.

BACKGROUND: Making major treatment decisions with life-altering consequences is a significant challenge faced by parents of children with cancer. The unique experience of parents is not well represented in the growing literature on cancer treatment decision making (TDM). OBJECTIVE: The objective of this study was to describe the process of parents making major treatment decisions for their children with cancer. METHODS: Using grounded theory methods, we interviewed 15 parents of 13 children with cancer facing major treatment decisions. RESULTS: Parents' determination to make the right decision was both a demanding responsibility and a natural extension of the parental role. Everything parents encountered and undertook during the TDM process was in the service of making the right decision for their child. All parents expressed conviction that they had made the right decision, but conviction was tempered by doubts triggered by the pervasive uncertainty of the childhood cancer experience. Parents described limited TDM participation by extended family members and the affected children themselves, asserting their primary responsibility to act as their child's surrogate in partnership with the child's medical team. CONCLUSIONS: Making the right decision for one's child under challenging conditions is an extension of the parental obligation to act in the child's best interest and a responsibility that parents claim as their own. IMPLICATIONS FOR PRACTICE: The findings from this study can serve as the foundation for future studies to refine the conceptualization of TDM in childhood cancer, which will in turn ground the development and evaluation of interventions to support parents in their critical TDM role.

Feasibility, acceptability, and usability of web-based data collection in parents of children with cancer.

PURPOSE/OBJECTIVES: To determine the feasibility of Web-based, multisite data collection using electronic instruments and the feasibility, acceptability, and usability of that data collection method to parents of children with cancer. DESIGN: Prototype development and feasibility study. SETTING: Three Children's Oncology Group centers in the United States. SAMPLE: 20 parents of children with cancer who made a treatment decision within the previous six months. METHODS: Eight instruments were translated from print to electronic format and deployed using a secure Web-based server. Parents completed printed versions of two of the instruments to assess comparability of the two formats. A post-survey interview focused on parents' computer experiences and the acceptability and ease of use of the instruments. MAIN RESEARCH VARIABLES: Time to orient parent to Web site, time to complete instruments, investigators' field notes, and postsurvey questionnaire. FINDINGS: Eighty percent of parents preferred the Web-based data collection and found it at least as easy as completing paper-and-pencil instruments. All parents, regardless of their computer expertise, were comfortable with the electronic data collection system. Statistical analysis demonstrated no evidence of systematic or clinically significant bias. CONCLUSIONS: The Web-based data collection was feasible, reliable, and preferred by most study participants. The authors will use this strategy in future intervention trials of parents making treatment decisions. IMPLICATIONS FOR NURSING: Web-based data entry is feasible and acceptable to parents of children with cancer. Future multicenter collaborative studies should develop and test nursing interventions to support parents making treatment decisions.

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 Mishel's 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 children's 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 children's management of uncertainty and its contribution to psychological adjustment to illness.

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 author's 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 (Cronbach's alpha = .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.

Parents of children with cancer: factors influencing their treatment decision making roles.

This study examined the factors that parents identified as influencing their role in treatment decision making (TDM) for their child with cancer. Content analysis of qualitative data from semistructured interviews with 36 parents as part of a mixed-methods study revealed numerous themes related to parents' TDM roles. Factors that were frequently identified included: relationship with the physician, nature of communication, trust in the physician, parents' and physician's knowledge and experience, and importance of parental role. Parents acknowledged a strong sense of responsibility and feeling of "ownership" of their child. Parents initially lacked knowledge and experience, but acquiring these over time contributed to a more active participation in TDM.

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 children's 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.

Parental treatment decision making in pediatric oncology.

OBJECTIVE: To review progress and future plans for a research program about parents' making treatment decisions for their children with cancer. DATA SOURCES: Theoretical papers, review articles, and research reports. CONCLUSION: Three important questions need to be addressed to achieve the goal of supporting parents in treatment decision making: 1) Whatfactors predict a parent's preferred role iln decision making? 2) What are the critical outcomes from parental decision making that nurses could help to improve? 3) Is it role choice, actual role assumed, or congruence between preferred and actual role in decision making that predicts decision outcomes for the parents? IMPLICATIONS FOR NURSING PRACTICE: Research-based responses to the remaining questions about parent treatment decision making will help nurses develop and test interventions designed to support parents in their decision making experiences.

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 Mishel's 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 study's findings document the benefits of the WWI for patients living with uncertainty.

Children living with chronic illness: an examination of their stressors, coping responses, and health outcomes.

This chapter reviews nursing research from the last decade on children and adolescents coping with chronic illnesses. Studies were identified by searches of MEDLINE and CINAHL and were included if at least one primary author was a nurse, the primary informants were children, and the focus of the study was on children's responses to illness and/or developmental stressors. Synthesis of the reviewed studies yielded typologies of illness-related and developmental stressors faced by chronically ill children, the coping strategies they commonly employed, and indices of their adjustment to illness. Although there was considerable agreement across illnesses, age ranges, and methodologies, the lack of explicitly employed developmental models or other theoretical perspectives means that very little is known about the processes by which individual characteristics, stressors, coping strategies, and outcomes are related. Recommendations for future research include the development and testing of conceptual models that will promote our understanding of how children's medical, psychosocial, and developmental outcomes can be improved, and a more systematic approach to understanding how children's maturing cognitive abilities affect their appraisal of stress and utilization of coping strategies in response to the demands of chronic illness.

"Getting used to it": children finding the ordinary and routine in the uncertain context of cancer.

Uncertainty has been described as one of the major stressors faced by children with cancer and their families. However, ill children's responses to uncertainty have not been systematically studied. This grounded theory study of 11 children undergoing treatment for cancer confirmed that children experience multiple uncertainties in the context of cancer diagnosis and treatment. For the most part, however, children did not characterize themselves as feeling uncertain. Instead, they quickly came to view their lives as routine and ordinary despite the unpredictable nature of their illness course. Children described a process of getting used to cancer that allowed them to keep their focus on the ordinary nature of their everyday lives within the uncertain context of their illness. This interplay between uncertainty and routine provides important insight into children's psychological adjustment to life-threatening illness.

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

BACKGROUND: The 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. OBJECTIVES: The 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 METHODS: Men 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. RESULTS: Using 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. CONCLUSIONS: Testing 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.

The care of my child with cancer: a new instrument to measure caregiving demand in parents of children with cancer.

The growing societal trend toward delivering more and more illness-related care in the home, driven both by family preferences and by mandates from third-party reimbursers, places additional responsibilities for increasingly complex caregiving on parents of children with serious illness. This article reports on the development and initial field test of The Care of My Child with Cancer, a caregiving demand instrument specific to the childhood cancer population. The instrument demonstrated strong internal consistency and test-retest reliability, and exploratory factor analysis provided initial evidence for the instrument's construct validity. The instrument will now be applied in a collaborative program of nursing research to further investigate caregiving demand and ultimately to develop nursing interventions to maximize medical and quality of life outcomes for children with cancer and their families.

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

BACKGROUND: 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. METHODS: The authors delivered a psychoeducational intervention by phone to men with prostate carcinoma, with or without supplemented delivery to a close family member, that was directed at managing uncertainty and improving symptom control. One hundred thirty-four Caucasian men and 105 African-American men were assigned randomly to one of two approaches to delivering the intervention or to the control condition. Men entered the study immediately after surgical treatment or in the first 3 weeks of radiation therapy. Trained nurses delivered the intervention through weekly phone calls for 8 weeks. RESULTS: The authors found that the majority of intervention effects were from baseline to 4 months postbaseline, when treatment side effects are most intense. Both Caucasian men and African-American men who received either one of the two approaches for delivering the intervention improved in the two uncertainty management methods of cognitive reframing and problem solving. Similarly, when the intervention groups were combined, men who received the intervention also improved significantly in control of incontinence by 4 months postbaseline. Decreases in the number of treatment side effects differed by time and treatment/ ethnic group interactions as did satisfaction with sexual functioning. CONCLUSIONS: This is one of the first tests of a psychoeducational intervention among men with prostate carcinoma and was the first test that included a sufficient number of African-American men to test by ethnic group. Therefore, replication of these findings is advised.