Multi-component behavioral intervention to promote health protective behaviors in childhood cancer survivors: the protect study.

BACKGROUND: Improved cure rates for childhood cancer have produced a growing population of survivors at risk for late toxicities of chemotherapy and radiation therapy. Healthy behaviors can modify these risks. We initiated a controlled prospective trial to determine if a multi-component behavioral intervention could induce change in childhood cancer survivors' health knowledge, health perceptions, and practice of health-protective behaviors. PROCEDURE: Adolescent cancer survivors attending a long-term follow-up clinic were randomized to receive standard follow-up care or standard care plus the educational intervention. Baseline measures were obtained at randomization (T(0)) and repeated 1 year (T(1)) later during the survivors' annual check-up. RESULTS: Of 272 patients enrolled and randomized, 251 are evaluable at both time points. Treatment and control groups were similar in regards to diagnosis, gender, race, and age. The change in outcome measures over the year (T(1)-T(0)) was not significantly different between the two groups as assessed by a two-sample pooled t test. However, additional exploratory analyses indicated a significant gender difference in knowledge with female survivors in the intervention group having higher scores. In addition, patients who choose certain individual health goals, such as breast/testicular self-examination, showed improved practice of the health behavior. In addition, in a very exploratory analysis, a gender difference in response to the intervention was noted, with females exhibiting a greater improvement in knowledge scores than did males. CONCLUSIONS: Although the multi-behavioral educational intervention did not induce change in health knowledge, perceptions, and behaviors of childhood cancer survivors for the treatment group as a whole, gender differences and specific health goal differences were found. These findings suggest that future interventions should be tailored to reflect gender differences and the nature of the health goal under assessment.

End-of-life decision making by adolescents, parents, and healthcare providers in pediatric oncology: research to evidence-based practice guidelines.

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.

An international feasibility study of parental decision making in pediatric oncology.

PURPOSE/OBJECTIVES: To describe parental decision making about treatment options for children with cancer and determine the feasibility of a similar but larger international study. DESIGN: Exploratory. SETTINGS: A pediatric catastrophic illness research hospital in the United States and children's hospitals in Australia and Hong Kong. SAMPLE: A convenience sample of 43 parents (5 fathers and 38 mothers ages 23-59 years). METHODS: Six open-ended interview questions posed to parents during private individual interviews. Content analysis techniques were used. MAIN RESEARCH VARIABLES: Parental perceptions of (a) factors considered in the decision-making process, (b) behaviors of healthcare professionals that affected the process, and (c) satisfaction with the process. Feasibility of a larger study was estimated by considering ease of access to parents, number of refusals to participate, understanding of the interview questions, and level of interest at each setting. FINDINGS: Access to parents was possible at all sites. Refusal to participate was reported only at the U.S. site. Certain factors (e.g., getting information from the healthcare team, trusting staff) were important to all parents considering end-of-life decisions. Site-specific factors included considering alternative therapies (at the Australian site) and strengthening faith (at the U.S. site). CONCLUSIONS: A larger international study of parental decision making is feasible. Sufficient similarities in parental decision making exist across these sites to justify future efforts to identify universal decision-making factors that, in conjunction with site-specific differences, could be helpful in developing guidelines for healthcare professionals who assist parents in making treatment-related decisions for a sick child.

An evaluation of the impact of a self-care coping intervention on psychological and clinical outcomes in adolescents with newly diagnosed cancer.

The demands of cancer treatment are particularly challenging for newly diagnosed adolescents. If attempts to cope with these demands are unsuccessful, adolescents may not comply with or may refuse treatment. As a result, their chances of survival are decreased. The purpose of this study, guided by the Adolescent Self-Sustaining Model, was to determine the effects of a three-part educational intervention designed to facilitate copying on psychological (hopefulness, hopelessness, self-esteem, self-efficacy and symptom distress) and clinical outcomes (treatment toxicity) among adolescents newly diagnosed with cancer. This two-site study used a longitudinal experimental two-group design with adolescents randomly assigned to the intervention or control group. Four measurement points spanning the first 6 months of treatment were included in the design. Of 93 eligible adolescents, 78 (46 females and 32 males) agreed to participate. No statistically significant differences between the intervention and control groups, or between male and female participants, were detected at any measurement point. Differences in scores over time within groups were noted. Explanations for the lack of group differences are offered, as are recommendations for strengthening the intervention and design for future testing.

Comparing patient, parent, and staff descriptions of fatigue in pediatric oncology patients.

Fatigue in children and adolescents with cancer is a disruptive symptom meriting clinical intervention by nurses, but has eluded definition, measurement, and intervention. Fatigue in these patients exists within a greater context of illness, treatment, and child and family development. Any effort to define, measure, and intervene with fatigue needs to take into consideration the major components of these children and adolescents' treatment context. The purpose of this descriptive study was to learn from three perspectives (patient, parent, and staff) how fatigue is identified and defined in 7- to 12-year-old children and in 13- to 18-year-old adolescents with cancer, and what factors contribute to or alleviate this fatigue. To elicit this information, separate focus groups were conducted with patients, parents, and staff at two pediatric oncology centers. Resulting interview data were analyzed using pragmatic and semantic content analysis techniques and the Wilson concept analysis process. Findings clearly indicated that children, adolescents, parents, and staff define patient fatigue differently. The conceptual definition from the child data emphasizes the physical sensation of the fatigue; alternating and at times merging physical and mental tiredness are emphasized in the adolescent's definition. Parents and staff view themselves as responsible for alleviating patient fatigue; patients viewed rest and distraction as their primary sources of improving fatigue. The conceptual definitions of fatigue as rendered by our three groups of participants can assist pediatric oncology patients, their parents, and staff in identifying fatigue. Factors identified by these participants as contributing or alleviating fatigue could be the basis for future interventions designed to reduce fatigue in pediatric oncology patients.

Fatigue in 7- to 12-year-old patients with cancer from the staff perspective: an exploratory study.

PURPOSE/OBJECTIVES: To document and analyze the perspectives of staff members who provide direct care to 7- to 12-year-old patients with cancer regarding the nature and characteristics of fatigue, causes of fatigue, and effective interventions for this population of young patients. DESIGN: Exploratory. SETTINGS: A pediatric oncology unit at a children's hospital in the southwest and a pediatric research center for childhood catastrophic diseases in the mid-south. SAMPLE: A convenience sample of 38 staff members (8 advanced practice nurses, 23 staff nurses, 2 nurses managers, 3 nutritionists, 1 chaplain, and 1 physician) whose experience in pediatric oncology ranged from two months to 23 years. METHODS: Nine open-ended questions were posed to staff members during focus group sessions. Staff responses were analyzed using content analysis techniques and the Wilson concept analysis technique. MAIN RESEARCH VARIABLE: Staff perceptions of fatigue in 7- to 12-year-old patients with cancer. FINDINGS: Fatigue is a state of diminished to complete loss of energy or will that is influenced by environmental, biochemical, personal, cultural, and treatment-related factors. This state, which may be acute, episodic, or chronic, can be accompanied by a changing emotional or mental state. CONCLUSIONS: Staff perceive fatigue to be a debilitating symptom for these children. When attempting to determine the presence or absence of fatigue, staff primarily compare a child's current state with his or her previous state rather than that of other children. Staff see themselves as having a role in causing and alleviating fatigue in this patient group. IMPLICATIONS FOR NURSING PRACTICE: Staff can use these findings to help them identify the presence of fatigue in these children and to identify contributing and alleviating factors.

Hopefulness and its characteristics in adolescents with cancer.

Hopefulness in adolescents with cancer serves critical functions related to the adolescents' sense of well-being and commitment to treatment. Given these critical functions, it is important to determine the essential characteristics of hopefulness, which include the degree and dynamism of hopefulness and the nature and attributes of hoped-for objects. The purposes of this two-site study were to describe the degree and dynamism of hopefulness at four time points during the first 6 months of adolescents' treatment for newly diagnosed cancer, to identify and describe the adolescents' hoped-for objects, and to evaluate potential relationships between the characteristics of hopefulness and patient gender, age, diagnosis, and time point in treatment. Seventy-eight adolescents completed the Hopefulness Scale for Adolescents, the Hopelessness Scale, and the Hopefulness Interview Question at each time point. Hopefulness scores were higher and hopelessness scores substantially lower than reported in other tested samples. Adolescents identified a total of 57 different hopes. Differences by age, gender, and diagnosis were found.

Feasibility of implementing health promotion interventions to improve health-related quality of life.

Survivors of childhood cancer are a growing and vulnerable population. Cure rates for pediatric cancers now exceed 60% and, by the year 2000, an estimated 1 of every 1,000 young adults will be a cancer survivor. Because this population is at increased risk for late medical and neoplastic complications that impact adversely on health-related quality of life, it is important to investigate methods to promote risk reduction by motivating survivors to practice health-promoting behaviors. With this background, we initiated a prospective, randomized, controlled feasibility study in which survivors attending a long-term follow-up clinic were randomized to receive standard care or standard care plus an educational intervention. Our objectives were to determine if the intervention would improve the survivors' knowledge about their cancer treatment and risks of late effects and increase their practice of health-protective behaviors. Since July 1995, 272 of 318 families (86%) approached about the study agreed to participate. Of these, 266 are evaluable for assessment of baseline knowledge and health behaviors. Demographic features, baseline knowledge, health perceptions and health behaviors did not differ among randomized groups. Assessment of the intervention's efficacy at changing health behaviors of survivors randomized to the intervention group will be available when the 1-year follow-up evaluations are completed for the study cohort. Our preliminary experience with this pilot study supports the feasibility of educational intervention research in a specialty clinic dedicated to monitoring long-term childhood cancer survivors. Int. J. Cancer Suppl. 12:138-142, 1999.

Testing the stress-response sequence model in paediatric oncology nursing.

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.

Peak and nadir experiences and their consequences described by pediatric oncology nurses.

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.

Decision making by parents and healthcare professionals when considering continued care for pediatric patients with cancer.

PURPOSE/OBJECTIVES: To better define the treatment-related decisions considered most difficult by parents of pediatric patients with cancer and the factors that influenced their final decisions. DESIGN: Retrospective-descriptive design. SETTING: Pediatric oncology institution in the mid-southern region on the United States. SAMPLE: 39 parents representing 37 of 83 eligible families, 16 attending physicians, three nurses, and two chaplains. METHODS: Parent participants responded by telephone to six open-ended interview questions and a 15-item questionnaire about factors that were important when making the decision to continue care. Healthcare professionals were interviewed face-to-face. MAIN RESEARCH VARIABLES: Most difficult treatment-related decisions; factors influencing decision making. FINDINGS: Parents reported 15 types of difficult decisions, the majority of which were made late in the course of treatment. Deciding between a phase I drug study or no further treatment (n = 14), maintaining or withdrawing life support (n = 11), and giving more chemotherapy or giving no further treatment (n = 8) were the most frequently reported difficult decisions. Parents rated "recommendations received from healthcare professionals" as the questionnaire factor most important in their decision making, and healthcare professionals rated "discussion with the family of the patient" as the most important factor. CONCLUSION: Parents of children or adolescents with cancer and their healthcare providers face difficult treatment-related decisions, many of which occur late in the course of treatment. Parents and healthcare professionals cite similar factors in their decision making but differ in their ratings of the factors' importance. For parents, the information and recommendations they receive from healthcare professionals figure most frequently and most importantly in their decision making. For healthcare professionals, the certainty that the patient will not get better and discussions with the patient's family figure most importantly in their decision making. Once parents conclude that their child can not get better, they are more likely to choose noncurative options such as choosing no further treatment or withdrawing life support. IMPLICATIONS FOR NURSING PRACTICE: Nurses can help determine what information parents need in their decision making. Particular attention must be given to ways to communicate the likelihood of the their child's survival.

Coming to terms: parents' response to a first cancer recurrence in their child.

The purpose of this study was to explore, using grounded theory, the process experienced by parents who are dealing with the first recurrence of cancer in their child. The sample of 33 guardians (27 mothers, 1 grandmother, and 5 fathers) was drawn from three pediatric oncology settings. Data were collected through interviews, observations, and medical record review. Thirteen parents were interviewed to validate first the evolving and, later, the complete study findings. Four interactive components emerged: regulating shock, situation monitoring, alternating realizations, and eyeing care-limiting decisions. The overall organizing construct induced from these components was labeled "coming to terms." This construct represents the parents' efforts to overcome shock and despair to make wise decisions about treatment while accepting that the outcome if beyond their control, and to help their child have the optimal chance for cure while preparing for the child's possible death.

A comparison of the stress--response sequence in new and experienced pediatric oncology nurses.

Oncology nurses experience a variety of occupational stresses. Different support measures have been provided for these nurses, but with mixed effects. This is likely because exact stressors, reactions, and consequences of the stressors differ among groups of oncology nurses, and a support measure appropriate for one group may be ineffective for another group. The purpose of this descriptive study was to identify the specific components of the stress-response sequence in new and experienced pediatric oncology nurses. Twenty-five nurses participated in guided interviews; nine of these comprised a new nurse orientation group, and 14 nurses were randomly selected from all nurses in the setting who had been in the specialty a minimum of 18 months. The new nurses were interviewed at 3, 6, and 12 months posthire, and the experienced nurses were interviewed one time. Interview data were content analyzed, and codes and definitions were developed for each component of the stress-response sequence. Distinct differences in stressors, reactions, and consequences were noted between new nurses who resigned before the 12th month of employment and those who did not, and between new nurses and experienced nurses; new nurses had few coping reactions, and their most common reaction was resignation. Experienced nurses; new nurses had few coping reactions, and their most common reaction was resignation. Experienced nurses had a greater number and different types of coping reactions and more positive consequences. Descriptive profiles were developed from the codes and can be used as a basis for tailored support measures for pediatric oncology nurses.

The 1992 APON Delphi study to establish research priorities for pediatric oncology nursing. Association of Pediatric Oncology Nurses.

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.

Establishing pediatric cancer nursing research priorities: a Delphi study.

The purpose of this study was to have pediatric oncology nurses identify and rate topic priorities for clinical nursing research in the specialty and to determine if nurses in a pediatric cancer center identified different priorities than did nursing colleagues in other settings. The sample consisted of 44 nurses from a comprehensive pediatric cancer center and 43 nurses attending the 12th Annual APON Conference. A decision-making method, the classical Delphi technique, was used. Three rounds of soliciting opinions by questionnaires were completed, and data from each round were reviewed and categorized by a research team of six nurses until group consensus was achieved. The majority of priorities identified by both groups concerned nursing procedures, the pediatric oncology patient, and the specialty itself. The least number of priorities were in the categories of care delivery systems and families. One difference between the two groups was that professional issues dominated the cancer center sample, whereas psychosocial issues were more prominent in the APON sample.