Implementing a pediatric oncology nursing multisite trial.

PURPOSE/BACKGROUND: The Parent Educational Discharge Support Strategies (PEDSS) nursing study includes 16 magnet pediatric oncology institutions across the United States and one in Saudi Arabia, evaluating a nurse-led parent educational discharge support strategy for families experiencing a child newly diagnosed with cancer. METHODS: During the first 3 months of the study, a research implementation survey was administered electronically to each site principal investigator to evaluate facilitators and barriers in the research process for this multisite nurse-led pediatric oncology study. RESULTS: Facilitators included nursing leadership support and commitment from the nursing staff. Common barriers reported were the Institutional Review Board process, the consent process, the timing of the intervention, data collection, as well as nursing time for the study. Results from the survey suggest nurse-led research teams were motivated and felt the intervention was easy to deliver. PRACTICE IMPLICATIONS: Nursing practice is enhanced when nurses participate in research and generate evidence regarding best practices within pediatric oncology nursing care. CONCLUSION: Nursing research endeavors focusing on collaborative approaches for implementation can lead to successful nursing studies with careful planning, training and administrative support.

Pediatric palliative care nursing.

Palliative care is patient- and family-centered care that enhances quality of life throughout the illness trajectory and can ease the symptoms, discomfort, and stress for children living with life-threatening conditions and their families. This paper aims to increase nurses' and other healthcare providers' awareness of selected recent research initiatives aimed at enhancing life and decreasing suffering for these children and their families. Topics were selected based on identified gaps in the pediatric palliative care literature. Published articles and authors' ongoing research were used to describe selected components of pediatric palliative nursing care including (I) examples of interventions (legacy and animal-assisted interventions); (II) international studies (parent-sibling bereavement, continuing bonds in Ecuador, and circumstances surrounding deaths in Honduras); (III) recruitment methods; (IV) communication among pediatric patients, their parents, and the healthcare team; (V) training in pediatric palliative care; (VI) nursing education; and (VII) nurses' role in supporting the community. Nurses are in ideal roles to provide pediatric palliative care at the bedside, serve as leaders to advance the science of pediatric palliative care, and support the community.

Families in Paediatric Oncology Nursing: Critical Incidents From the Nurses' Perspective.

PURPOSE: Paediatric oncology nurses encounter challenges with families on a daily basis. This study explores how nurses describe significant incidents when encountering families and family members during the child's hospitalisation in the paediatric oncology unit. DESIGN AND METHODS: A qualitative study with a phenomenological approach in which 17 paediatric oncology nurses from three different hospitals described critical incidents related to families. The participants' written descriptions were analysed using inductive content analysis. RESULTS: The results indicate three domains where critical incidents occur: 1) Families' capability and resources, 2) parents' behaviour and 3) emotional labour in paediatric oncology nursing. CONCLUSION: The results indicate that paediatric oncology nurses face situations with patients' parents that can cause them stress and uncertainty, as well as burden them emotionally. Some of the incidents dealt with difficult ethical questions. Because of the challenges that families are facing, as described in the study, nurses need to focus more on helping families identify their resources and empower themselves in order to adapt to a new situation in their lives. IMPLICATIONS: The results provide important information not only for paediatric nursing but also for education and management. Since the quality of family nursing does not only depend on the competence of nurses or available resources, support from management concerning the work with families of severely sick children would be beneficial to the nurses. In addition, educational interventions need to be developed in order to strengthen the capability of nurses to successfully respond to challenging situations with families.

Conceptual framework for designing video games for children with type 1 diabetes / Estrutura conceitual para o desenvolvimento de videogames para crianças com diabetes mellitus tipo 1 / Estructura conceptual para el desarrollo de videojuegos para niños con diabetes tipo 1

ABSTRACT Objective: to present a theoretically based conceptual framework for designing video games for children with type 1 diabetes mellitus. Methods: this was a methodological study that developed a conceptual framework with nine steps in view of health behavior change theories and the user-centered design approach as theoretical and methodological frameworks, respectively. Twenty-one children, aged 7 to 12 years, participated by expressing their needs and preferences related to diabetes and video games. Data were analysed following content analysis guidelines. Then, a choice of appropriate health behavioral change theories and their determinants that should be capable of influencing children's behaviors and preferences. Results: the conceptual framework proposes a video game that consists of six phases, each addressing one stage of behavioral change and specific determinants, aligned with the needs and preferences identified by the participating children. This study shows the applicability of this framework in view of each proposed phase presenting examples and the children's ideas. Conclusion: the results of this study contribute to advance the discussion on how behavioral theories and their determinants should be related to the design of creative and funny video games considering the profile of the target population as well as its needs and preferences.

RESUMO Objetivo: apresentar uma estrutura teórica conceitual para o desenvolvimento de videogames para crianças com diabetes mellitus tipo 1. Métodos: este estudo metodológico desenvolveu uma estrutura conceitual com nove etapas, baseada em teorias de mudança de comportamentos em saúde e na abordagem do desenho centrado no usuário como referencial teórico e metodológico, respectivamente. Vinte e uma crianças entre 7 a 12 anos participaram do estudo, expressando suas necessidades e preferências relacionadas ao diabetes e videogames. Os dados foram analisados de acordo com as diretrizes de análise de conteúdo. Em seguida, foram selecionadas teorias de mudança de comportamentos em saúde e seus determinantes, que pudessem ser capazes de influenciar os comportamentos e preferências das crianças. Resultados: a estrutura conceitual propõe um videogame composto por seis fases, cada uma tratando de um estágio de mudança de comportamento e com determinantes específicos, alinhados às necessidades e preferências identificadas. O estudo mostra a aplicabilidade da estrutura desenvolvida, considerando cada fase proposta, apresentando exemplos e ideias das crianças. Conclusão: os resultados da pesquisa contribuem para o avanço nas discussões de como as teorias comportamentais e seus determinantes devem estar relacionados ao desenho de videogames criativos e divertidos, considerando o perfil da população alvo, assim como suas necessidades e preferências.

RESUMEN Objetivo: presentar una estructura teórica conceptual para el desarrollo de videojuegos para niños con diabetes mellitus tipo 1. Métodos: este estudio metodológico desarrolló una estructura conceptual con nueve etapas, basada en teorías de cambio de comportamientos en salud y en el enfoque del diseño centrado en el usuario como referencial teórico y metodológico, respectivamente. Veintiún niños entre 7 y 12 años participaron del estudio, expresando sus necesidades y preferencias relacionadas a la diabetes y a los videojuegos. Los datos fueron analizados de acuerdo con las directrices del análisis de contenido. Enseguida, fueron seleccionadas las teorías de cambio de comportamientos en salud y sus determinantes, que pudieran ser capaces de influenciar los comportamientos y preferencias de los niños. Resultados: la estructura conceptual propone un videojuego compuesto por seis fases, cada una tratando de una etapa de cambio de comportamiento y con determinantes especificos, alineados a las necesidades y preferencias identificadas. El estudio muestra la aplicabilidad de la estructura desarrollada, considerando cada fase propuesta, presentando ejemplos e ideas de los niños. Conclusión: los resultados de la investigación contribuyen para el avance en las discusiones de como las teorías comportamentales y sus determinantes deben estar relacionados al diseño de videojuegos creativos y divertidos, considerando el perfil de la población objetivo, así como sus necesidades y preferencias.

Assessing the Needs of Parents of Children Diagnosed With Cancer in China: A Psychometric Study Developing a Needs Assessment Tool.

The psychosocial well-being of parents remains integral to the treatment and recovery of children diagnosed with cancer. However, limited research addresses the unique needs of this population. To better understand the supportive care needs of parents of children with cancer, this study tested the reliability and stability of the factorial structure of a revised version of the Cancer Patient Needs Questionnaire (rCPNQ) with Chinese parents of children who have cancer. Analysis of the generalizability of the rCPNQ with this population was determined through principle components analysis with varimax rotation. Reliability coefficient and split sample analyses were performed to determine reliability and stability of the resulting factors. The principal components analysis resulted in a 6-dimension, 8-factor, 29-item survey. Each of the factors had Cronbach's α ≥ .74, indicating satisfactory internal consistency and reliability of the survey with the Chinese population. Similar loadings on splitting of the samples reflects the stability of the factors. Study results provided a preliminary understanding of the needs of Chinese parents of children with cancer and demonstrated that the rCPNQ offers a reliable measure for nurses and other health care providers to partner with Chinese parents throughout their children's treatment and survivorship to determine areas for support.

Organizational and Managerial Resources and Quality of Care in French Pediatric Oncology Nursing.

The purpose of this study was to examine the relationships between nurses' organizational and managerial resources (ie, perceived organizational support and transformational leadership) and their quality of patient care, and second, the mediating role of job satisfaction in these relationships. Participants were 510 nurses from 25 out of 29 French pediatric oncology units. Structural equation modeling results revealed that perceived organizational support and transformational leadership were related to nurses' perceived quality of care and that job satisfaction acted as a mediator between these 2 antecedents (ie, organizational and managerial determinants) and this outcome (ie, quality of care). Based on these findings, practical suggestions and directions for future research are discussed.

The Clinical Research Associate Retention Study: A Report From the Children's Oncology Group.

Pediatric medicine often struggles to receive adequate research funding for its small, yet vulnerable population of patients. Remarkable discovery in pediatric oncology is credited in large part to the collaborative structure of its research community. The Children's Oncology Group conducts studies supported by the National Cancer Institute. The clinical research associate (CRA) discipline comprises professionals who support administrative duties, regulatory duties, subject management, and data collection at individual research sites. The purpose of this study was to identify factors associated with CRA retention, as the group continues to have high turnover and position vacancy. A cross-sectional survey design was used to characterize the most frequently cited reasons CRAs gave when considering leaving or staying within their position. Results suggest that low salary, unmanageable workload, lack of career advancement and professional development, and lack of research commitment from the medical team were associated with intent to leave CRA positions. The most frequently cited reasons for staying at their job were the meaningfulness and interest in the work, a supportive principal investigator, and enjoyment working with colleagues. CRAs reported serious but eminently solvable issues that can be addressed using practical and low-cost solutions to improve job satisfaction and retention.

Predictors of Patient Satisfaction in Pediatric Oncology.

OBJECTIVE: To understand key drivers of patient satisfaction in pediatric hematology/oncology. METHODS: The "top-box" scores of patient satisfaction surveys from 4 pediatric hematology/oncology practices were collected from 2012 to 2014 at an integrated Children's Health Network. One item, "Likelihood of recommending practice," was used as the surrogate for overall patient satisfaction, and all other items were correlated to this item. RESULTS: A total of 1244 satisfaction surveys were included in this analysis. The most important predictors of overall patient satisfaction were cheerfulness of practice ( r = .69), wait time ( r = .60), and staff working together ( r = .60). The lowest scoring items were getting clinic on phone, information about delays, and wait time at clinic. CONCLUSION: Families bringing their children for outpatient care in a hematology/oncology practice want to experience a cheerful and collaborative medical team. Wait time at clinic may be a key driver in the overall experience for families with children with cancer. Future work should be directed at using this evidence to drive patient experience improvement processes in pediatric hematology/oncology.

The Validity of Using Health Administrative Data To Identify the Involvement of Specialized Pediatric Palliative Care Teams in Children with Cancer in Ontario, Canada.

BACKGROUND: Population-based research to identify underserviced populations and the impact of palliative care (PC) is limited as the validity of such data to identify PC services is largely unknown. OBJECTIVE: To determine the validity of using such data to identify the involvement of specialized pediatric PC teams among children with cancer. DESIGN: Retrospective cohort. SUBJECTS: Ontario children with cancer who died between 2000 and 2012, received care through a pediatric institution with a specialized PC team and a clinical PC database. MEASUREMENTS: All patients in the clinical databases were linked to population-based health services administrative databases. Six algorithms were created to indicate the use of formal pediatric PC teams based on the record type (physician billings vs. inpatient records vs. both) and number of eligible codes required (≥1 vs. ≥2). Each was validated against the pediatric PC clinical databases. RESULTS: The cohort comprised 572 children; 243 were in the clinical databases. Algorithms using only inpatient records had high specificity (80%-95%) but poor sensitivity (21%-56%). Including physician billings increased sensitivity but lowered specificity. The algorithm with overall best performance required ≥2 physician billing or inpatient diagnosis codes indicating PC [sensitivity 0.79 (95% CI 0.73-0.84), specificity 0.58 (95% CI 0.53-0.64)]. CONCLUSIONS: Health administrative data identifies involvement of specialized pediatric PC teams with good sensitivity but low specificity. Studies using such data alone to compare patients receiving and not receiving specialized pediatric PC are at significant risk of misclassification and potential bias. Population-based PC databases should be established to conduct rigorous population-based PC research.

Evaluating Cultural Competence of Pediatric Oncology Nurses at a Teaching Hospital: A Pilot Study.

This cross-sectional descriptive study evaluated registered nurses' self-ratings of cultural competence on the hematology/oncology unit at a large Northeastern urban children's hospital. The Inventory for Assessing the Process of Cultural Competence among Healthcare Professionals was used to measure 5 constructs of cultural competence. The study findings show that there were significant correlations between the knowledge and skill subscales (ρ = .57, P < .001) and the knowledge and desire subscales (ρ = .42, P < .05). The highest mean among the 5 subscales was cultural desire (mean = 15.5), indicating that nurses were motivated to engage in the process of becoming culturally competent. The lowest mean among the 5 subscales was cultural knowledge (mean = 11.2), followed by cultural skill (mean = 11.8), indicating that nurses did not perceive themselves to be well informed in these areas. The findings from this pilot study suggest that nurses on this pediatric oncology unit are most likely to possess cultural desire and cultural awareness, but there is certainly opportunity to engage and educate the staff. Targeted interventions to improve cultural competence on this inpatient unit are being explored and a larger scale study is being planned to assess the cultural competence of nurses across the hospital.

An evaluation of the costs and consequences of Children Community Nursing teams.

AIMS: Recent years have seen an increasing shift towards providing care in the community, epitomised by the role of Children's Community Nursing (CCN) teams. However, there have been few attempts to use robust evaluative methods to interrogate the impact of such services. This study sought to evaluate whether reduction in secondary care costs, resulting from the introduction of 2 CCN teams, was sufficient to offset the additional cost of commissioning. METHODS: Among the potential benefits of the CCN teams is a reduction in the burden placed on secondary care through the delivery of care at home; it is this potential reduction which is evaluated in this study via a 2-part analytical method. Firstly, an interrupted time series analysis used Hospital Episode Statistics data to interrogate any change in total paediatric bed days as a result of the introduction of 2 teams. Secondly, a costing analysis compared the cost savings from any reduction in total bed days with the cost of commissioning the teams. This study used a retrospective longitudinal study design as part of the transforming children's community services trial, which was conducted between June 2012 and June 2015. RESULTS: A reduction in hospital activity after introduction of the 2 nursing teams was found, (9634 and 8969 fewer bed days), but this did not reach statistical significance. The resultant cost saving to the National Health Service was less than the cost of employing the teams. CONCLUSION: The study represents an important first step in understanding the role of such teams as a means of providing a high quality of paediatric care in an era of limited resource. While the cost saving from released paediatric bed days was not sufficient to demonstrate cost-effectiveness, the analysis does not incorporate wider measures of health care utilisation and nonmonetary benefits resulting from the CCN teams.

Keeping sick children in hospital SAFE from harm.

Emeritus Professor Alan Glasper, from the University of Southampton, discusses the quest by the Royal College of Paediatrics and Child Health to improve safety and reduce preventable deaths in UK paediatric units.

Challenges Caring for Adults With Congenital Heart Disease in Pediatric Settings: How Nurses Can Aid in the Transition.

As surgery for complex congenital heart disease is becoming more advanced, an increasing number of patients are surviving into adulthood, yet many of these adult patients remain in the pediatric hospital system. Caring for adult patients is often a challenge for pediatric nurses, because the nurses have less experience and comfort with adult care, medications, comorbid conditions, and rehabilitation techniques. As these patients age, the increased risk of complications and comorbid conditions from their heart disease may complicate their care further. Although these patients are admitted on a pediatric unit, nurses can aid in promoting their independence and help prepare them to transition into the adult medical system. Nurses, the comprehensive medical teams, and patients' families can all effectively influence the process of preparing these patients for transition to adult care.

The Effect of Palliative Care Team Design on Referrals to Pediatric Palliative Care.

BACKGROUND: The American Academy of Pediatrics (AAP) and the American Academy of Hospice and Palliative Medicine (AAHPM) have recommended minimal standards for palliative care (PC) team composition and availability. It is unknown whether team composition affects utilization of PC. OBJECTIVE: The study objective was to describe pediatric PC team composition, evaluate whether composition and availability are associated with utilization, and examine PC referral patterns. METHODS: The study was a descriptive survey. Subjects were pediatric PC team directors or hospital administrators at Pediatric Health Information System (PHIS) hospitals (N = 44). RESULTS: The overall response rate was 86%. Teams varied in size from <1 to 9 full-time members. Average referrals per hospital bed were 0.46, range 0.05-2.13. Among individual PC team roles, referral rates were 34% greater in teams with an advanced nurse practitioner (ANP) (p = 0.07). Likewise, teams with acute pain, chronic pain, or hospice palliative medicine specialists tended to have greater referral rates (39%, 36%, and 25%), though reported differences were not statistically significant. Teams adherent to the original AAP recommendations had a 31% greater referral rate (p = 0.22). Teams available 24 hours daily had similar referral rates to those with less availability (0.47 versus 0.46 [p = 0.94]). CONCLUSIONS: Team composition and availability are not crucial to PC utilization. Hospitals with some personnel but not all recommended team members should create formal teams and modify them over time. The addition of team members that tend to increase referrals, namely ANPs and acute pain, chronic pain, or hospice palliative medicine specialists, should be considered.

Nurse-Led Programs to Facilitate Enrollment to Children's Oncology Group Cancer Control Trials.

The progress made over the past 50 years in disease-directed clinical trials has significantly increased cure rates for children and adolescents with cancer. The Children's Oncology Group (COG) is now conducting more studies that emphasize improving quality of life for young people with cancer. These types of clinical trials are classified as cancer control (CCL) studies by the National Cancer Institute and require different resources and approaches to facilitate adequate accrual and implementation at COG institutions. Several COG institutions that had previously experienced problems with low accruals to CCL trials have successfully implemented local nursing leadership for these types of studies. Successful models of nurses as institutional leaders and "champions" of CCL trials are described.

The Benefits of a Nurse-Driven, Patient- and Family-Centered Pediatric Palliative Care Program.

This article describes the program and outcomes of a nurse driven, patient- and family-centered pediatric advanced comprehensive care team (PACCT) palliative program. This care delivery model improved patient outcomes by providing care across the healthcare continuum for pediatric patients. Since the inception of PACCT, no child has died on a ventilator in the pediatric ICU associated with end-of-life-related issues.

Gerenciamento do cuidado de enfermagem à criança em condição crônica hospitalizada / Gestión de atención de enfermería a niños hospitalizados con condición crónica / Nursing care management for children hospitalized with chronic conditions

RESUMOObjetivo:compreender as interações do enfermeiro na prática do gerenciamento do cuidado de enfermagem à criança em condição crônica hospitalizada.Método:foram utilizados como referenciais teórico e metodológico, respectivamente, o Pensamento Complexo e a Grounded Theory. Participaram do estudo 18 sujeitos organizados em três grupos: enfermeiros, técnicos de enfermagem e familiares. A técnica empregada para a coleta de dados foi a entrevista semiestruturada. A análise dos dados seguiu as três etapas de codificação: aberta, axial e seletiva.Resultados:a categoria "Necessitando gerenciar o cuidado de enfermagem à criança em condição crônica na Unidade de Internação Pediátrica" e suas respectivas subcategorias apresentam as complexas vinculações intersubjetivas estabelecidas pelo enfermeiro que sustentam a prática do gerenciamento do cuidado de enfermagem.Conclusão:nota-se dificuldade dos profissionais de enfermagem em interagir com o familiar da criança e na implementação do processo gerencial de cuidado, a dialógica ordem/desordem/interação/organização.

RESUMENObjetivo:comprender las interacciones del enfermero en la práctica del gerenciamiento del cuidado de enfermería al niño con condición crónica hospitalizada.Método:se utilizó como referenciales, teórico y metodológico, respectivamente, el Pensamiento Complejo y la Grounded Theory. Participaron del estudio 18 sujetos organizados en tres grupos: enfermeros, técnicos de enfermería y familiares. La entrevista semiestructurada fue utilizada como técnica para recoger datos. El análisis siguió las tres etapas de codificación: abierta, axial y selectiva.Resultados:la categoría "Necesitando administrar el cuidado de enfermería al niño con condición crónica en la Unidad de Internación Pediátrica" y sus respectivas subcategorías revelan las complejas vinculaciones intersubjetivas establecido por la enfermero que apoyan la práctica del gerenciamiento del cuidado de enfermería.Conclusión:se nota una dificultad de los profesionales de enfermería en interaccionar con el familiar del niño y la dialógica orden/desorden/interacción/organización en la implementación del proceso de gestión de la atención.

ABSTRACTObjective:to understand the interactions of nurses managing nursing care for the hospitalized child with a chronic condition.Method:Theoretical and methodological references were used, Complex Thought and grounded theory, respectively. In the study 18 subjects have participated arranged in three groups: nurses, nursing technicians and family members. A semi-structured interview was used as technique for data collection. The data analysis followed three stages of coding: open, axial and selective.Results:the category "Needing to manage nursing care to the hospitalized child with chronic condition in Pediatric Inpatient Unit" and their subcategories show the complex inter subjective bindings established by nurses that support the practice of nursing care management.Conclusion:There are difficulties for nursing professionals to interact with the child's family and the dialogical order/disorder/interaction/organization in the implementation of the management process of care is.