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Biomedical subjects

P S Hinds

Publications and source records attributed to P S Hinds.

At least 19 recordsLinked to original sources

Quality of life as conveyed by pediatric patients with cancer.

Quality-of-life instruments have provided important advances in measuring the quality of life of pediatric patients receiving treatment for cancer. However, the bases of these instruments have not included first-hand reports from the patients; thus, these instruments may be conceptually incomplete. We directly solicited from pediatric patients their perspectives regarding their quality of life during treatment for cancer. We conducted two pilot studies: 23 patients (aged 8-15 years) participated in the first, a cross-sectional study; and 13 patients (aged 10-18 years) participated in the second, a 2-year longitudinal study. Data were analyzed by using a semantic-content method, and the following six domains were recognized in data from both of the studies: symptoms, usual activities, social/family interactions, health status, mood, and the meaning of being ill. These domains were compared with those of seven established pediatric oncology quality-of-life instruments, none of which included all six of these domains; the domain most frequently missing was the meaning of being ill domain. Here we present a new definition of the quality of life of pediatric oncology patients that is based on six domains; this definition may ensure the completeness and sensitivity of these important instruments.

Adolescent↗

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.

Adolescent↗

Fatigue in children and adolescents with cancer: evolution of a program of study.

OBJECTIVES: To describe the development of a research program focused on cancer-related fatigue in children and adolescents and the resulting definition and model. DATA SOURCES: Research studies, review articles, and clinical examples. CONCLUSIONS: Fatigue has been identified by children and adolescents who are receiving treatment for cancer as one of the most distressing treatment-related symptoms they experience, yet fatigue is rarely assessed by health professionals and infrequently reported by patients or their parents. IMPLICATIONS FOR NURSING PRACTICE: An improved understanding of the contributory and alleviating factors that cause fatigue in this patient population will provide them with greater comfort during treatment for cancer.

Adolescent↗

Fostering coping by adolescents with newly diagnosed cancer.

OBJECTIVES: To review a research program about adolescents' coping with life-threatening illness and nurses' role in fostering the adolescents' coping efforts. DATA SOURCES: Research studies, review articles, and book chapters. CONCLUSIONS: Adolescents who have cancer are at risk of negative health outcomes. Promoting positive coping during the developmental period of adolescence helps adolescents to assume greater responsibility for their health actions. IMPLICATIONS FOR NURSING PRACTICE: Certain behaviors initiated by health care providers on hopefulness in adolescents assists the ill adolescents in articulating their hopes and realising or redefining those hopes.

Adaptation, Psychological↗

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.

Journal Article↗

Creating a hospital-based nursing research fellowship program for staff nurses.

Staff nurses are expected to participate in nursing research and to use study findings. Insufficient institutional support and uncertainties about how to participate in the research process can prevent staff nurses from meeting these expectations. We describe a newly developed nursing research fellowship program designed for staff nurses who practice in an acute care setting. An overview of the entire curriculum and the outcomes of the first year of the program are described.

Curriculum↗

Testing the stress-response sequence in pediatric oncology nursing.

This article summarizes six studies completed at St. Jude Children's Research Hospital on role-related stress experienced by pediatric oncology nurses. Two models, the Environmental Care model and the Stress-Response Sequence (SRS) model, provided the theoretical guidance for these studies. The studies included initial efforts to identify and define role-related stressors, reactions, and consequences; to develop a psychometrically sound instrument to measure role-related stressors; and to test portions of the SRS model. Subsequent studies included a complete testing of the SRS model, an exploratory effort to define role-related meaning, and a testing of the revised SRS model. Findings to date indicate that pediatric oncology nurses experience moderate to high role-related stressors but report notably positive consequences, including high job satisfaction and group cohesion and low intent to leave the setting or the specialty. High levels of role-related meaning seem to sustain the commitment of pediatric oncology nurses in their efforts to deal with role-related stressors. The current study will help to determine if the revised SRS model adequately explains the role-related stress response of pediatric oncology nurses. If it does, the revised model will be used to develop and test interventions designed to increase role-related meaning and effective coping reactions.

Adaptation, Psychological↗

Identifying nursing research priorities in a pediatric clinical trials cooperative group: the Pediatric Oncology Group experience.

If nurses involved in pediatric oncology clinical trials are to use resources and manpower most effectively, nursing research priorities must be set that meet the nursing care issues of nurses at the bedside. Using a Delphi technique, nurses from the Pediatric Oncology Group (POG) were surveyed in Round 1 to discover patient care concerns or other issues in pediatric oncology nursing related to clinical trials. The 87 research ideas generated were reviewed by a panel of nurse experts, and a total of 57 unique research topics were delineated. These topics were then used for Round 2 of the Delphi study, which identified the top 10 nursing research priorities of the POG nurses participating in the study.

Clinical Trials as Topic↗

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.

Adolescent↗

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.

Adolescent↗

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.

Adolescent↗

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.

Adult↗

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.

Adult↗

Fatigue in children and adolescents with cancer.

Fatigue is a common symptom found in the adult oncology literature. However, little is known about its occurrence, causes, conceptual and operational definitions, and effective interventions in children and adolescents with cancer. The purpose of this study was to define and describe fatigue experienced by children and adolescents receiving treatment for cancer. A focus group approach was used to reveal the contextual understanding of fatigue through discussions. Eleven focus groups were convened during a 2-month period at two major children's cancer centers. Twenty-nine children participated in the focus groups: 14 were 7 to 12 years of age and 15 were 13 to 16 years of age. Focus groups were held separately for each age group, lasted from 30 to 45 minutes, and were audiotaped. The audiotapes were transcribed verbatim, and Ethnograph software was used to number the data to sort and code the information. Researchers at both study sites coded the data independently within the context of the unit of analyses, which, in this study, were the study questions. Codes and descriptions were developed for the definitions of fatigue, causes of fatigue, and what helps. Eight codes emerged from the children groups and 12 from the adolescent groups to define fatigue. Six codes were developed from the children groups and 12 from the adolescent groups to describe causes of fatigue. Three codes from the children groups and eight from the adolescent groups described what helps. This study is the first to evaluate fatigue as a symptom in children and adolescents with cancer. Findings from this study will provide the foundation for developing a conceptual model for cancer-related fatigue in children and adolescents.

Adolescent↗