Impact of the Children's Oncology Group's supportive care clinical practice guideline endorsement program: An institutional survey.

BACKGROUND: Supportive care clinical practice guidelines (CPGs) facilitate the incorporation of the best available evidence into pediatric cancer care. We aimed to assess the impact of the work of the Children's Oncology Group (COG) Supportive Care Guideline Task Force on institutional supportive care practices. PROCEDURE: An online survey was distributed to representatives at 209 COG sites to assess the awareness, use, and helpfulness of COG-endorsed supportive care CPGs. Availability of institutional policies regarding 13 topics addressed by current COG-endorsed CPGs was also assessed. Respondents described their institutional processes for developing supportive care policies. RESULTS: Representatives from 92 COG sites responded to the survey, and 78% (72/92) were "very aware" of the COG-endorsed supportive care CPGs. On average, sites had policies that addressed seven COG-endorsed supportive care CPG topics (median = 7, range: 0-12). Only 45% (41/92) of sites reported having institutional processes for developing supportive care policies. Of these, most (76%, 31/41) reported that the COG-endorsed CPGs have a medium or large impact on policy development. Compared with sites without processes for supportive care policy development, sites with established processes had policies on a greater number of topics aligned with current COG-endorsed CPG topics (mean = 6.6, range: 0-12 vs mean = 7.9, range: 2-12; p = 0.027). CONCLUSIONS: Most site respondents were aware of the COG-endorsed supportive care CPGs. Less than half of the COG sites represented in the survey have processes in place to implement supportive care policies. Improvement in local implementation is required to ensure that patients at COG sites receive evidence-based supportive care.

BREATHE-T1D: Using iterative mixed methods to adapt a mindfulness-based intervention for adolescents with type 1 diabetes: Design and development.

BACKGROUND: Negative affect is prevalent among adolescents with type 1 diabetes (T1D) and may impact diabetes self-management and outcomes through stress-related behaviors such as disordered eating. METHODS: We describe the development of and design for the adaptation of a mindfulness-based intervention (MBI) for adolescents with T1D and negative affect. BREATHE-T1D is an MBI designed to target negative affect that has been tailored to address the unique lived experiences of adolescents with T1D. Qualitative interviews with stakeholders and participants were used to inform iterative adaptations to the intervention and control curricula over the course of the study. The primary aim of this paper is to describe the design, development, and protocol of the present pilot feasibility trial. CONCLUSIONS: Iterative, qualitative methodology throughout the adaptation of an intervention is important for ensuring the resulting intervention is relevant and meaningful for the target population. CLINICAL TRIAL REGISTRATION NUMBER: NCT05268393.

Decision-Making Involvement, Self-Efficacy, and Transition Readiness in Youth With Sickle Cell Disease.

BACKGROUND: Transition to adult healthcare is a critical time for adolescents and young adults (AYAs) with sickle cell disease, and preparation for transition is important to reducing morbidity and mortality risks associated with transition. OBJECTIVE: We explored the relationships between decision-making involvement, self-efficacy, healthcare responsibility, and overall transition readiness in AYAs with sickle cell disease prior to transition. METHODS: This cross-sectional, correlational study was conducted with 50 family caregivers-AYAs dyads receiving care from a large comprehensive sickle cell clinic between October 2019 and February 2020. Participants completed the Decision-Making Involvement Scale, the Sickle Cell Self-Efficacy Scale, and the Readiness to Transition Questionnaire. Multiple linear regression was used to assess the relationships between decision-making involvement, self-efficacy, healthcare responsibility, and overall transition readiness in AYAs with sickle cell disease prior to transition to adult healthcare. RESULTS: Whereas higher levels of expressive behaviors, such as sharing opinions and ideas in decision-making, were associated with higher levels of AYA healthcare responsibility, those behaviors were inversely associated with feelings of overall transition readiness. Self-efficacy was positively associated with overall transition readiness but inversely related to AYA healthcare responsibility. Parent involvement was negatively associated with AYA healthcare responsibility and overall transition readiness. DISCUSSION: While increasing AYAs' decision-making involvement may improve AYAs' healthcare responsibility, it may not reduce barriers of feeling unprepared for the transition to adult healthcare. Facilitating active AYA involvement in decision-making regarding disease management, increasing self-efficacy, and safely reducing parent involvement may positively influence their confidence and capacity for self-management.

A Qualitative Analysis of Observed Behavior of Pediatric Rapid Response Team Performance.

BACKGROUND AND OBJECTIVES: Pediatric rapid response teams (RRTs) enhance patient safety, reduce cardiorespiratory arrests outside the PICU, and detect deteriorating patients before decompensation. RRT performance may be affected by failures in communication, poor team dynamics, and poor shared decision-making. We aimed to describe factors associated with team performance using direct observation of pediatric RRTs. METHODS: Our team directly observed 73 in situ RRT activations, collected field notes of qualitative data, and analyzed the data using conventional content analysis. To assess accuracy of coding, 20% of the coded observations were reassessed for interrater reliability. The codes influencing team performance were categorized as enhancers or threats to RRT teamwork and organized under themes. We constructed a framework of the codes and themes, organized along a spectrum of orderly versus chaotic RRTs. RESULTS: Three themes influencing RRT performance were teamwork, leadership, and patient and family factors, with underlying codes that enhanced or threatened RRT performance. Novel factors that were found to threaten team performance included indecision, disruptive behavior, changing leadership, and family or patient distress. Our framework delineating features of orderly and chaotic RRTs may be used to inform training and design of RRTs to optimize performance. CONCLUSIONS: Observations of in situ RRT activations in a pediatric hospital both verified previously described characteristics of RRTs and identified new characteristics of team function. Our proposed framework for understanding these enhancers and threats may be used to inform future interventions to improve RRT performance.

Navigating decisional conflict as a family when facing the decision of stem cell transplant for a child or adolescent with sickle cell disease.

OBJECTIVE: Patients with sickle cell disease (SCD) face unpredictable disease, with stem cell transplant being a curative treatment option with risks. The aim of this study was to describe the level and source of decisional conflict in families of children/adolescents with SCD facing a transplant decision. METHODS: A multiple-case study approach described decisional conflict in various SCD severity/donor risk decisional contexts. Cases included parents, child/adolescent with SCD, and sibling donor. The level and source of conflict was measured via O'Connor's Decisional Conflict Scale and analyzed using pattern-matching and cross-case synthesis. In-depth descriptions of conflict sources were obtained through thematic analysis of observation and interview data. RESULTS: Among 11 participants in four cases (i.e. family units) decisional conflict was not unique not to the decisional context. Conflict levels represented a level that can be linked with feeling unsure and decisional delay. The theme, 'navigating decisional conflict together', described how family units discussed uncertainties. CONCLUSION: Varying levels and sources of decisional conflict exist in pediatric patients with SCD and their families considering transplant. PRACTICE IMPLICATIONS: In our cases, decisional conflict and the transplant decision occurred at the family-level. Clinicians should encourage all family members to participate in discussions concerning transplant.

Pediatric Provider Experiences with Implementation of Routine Mental Health Screening.

OBJECTIVE: Despite the utility of universal screening, most pediatric providers rarely use mental health (MH) screening tools. As such, provider descriptions of their experiences with universal screening are limited. The goal of this study was to describe barriers to, and facilitators of, universal MH screening implementation, the perceived impact of such screening, impressions of a screening-focused quality improvement (QI) Learning Collaborative, and lessons learned. METHOD: We invited primary care clinicians participating in a large-scale QI Learning Collaborative on MH screening (n = 107) to complete postproject interviews. Interviews were transcribed and analyzed using constant comparative qualitative analysis, an inductive, iterative process. RESULTS: Eleven interviews were completed and analyzed. Practice sites included academic health centers, a private practice, and a federally qualified health center. Providers described the positive impact of screening (increased identification of MH concerns) and barriers and facilitators of screening at the practice level (clinic and leadership buy-in and electronic medical record integration), the provider level (provider beliefs about the importance of screening), and the patient level (parent literacy). Challenges of linking families with care after screening included lack of adequate referrals, long wait lists, limited bilingual providers, insurance gaps, and inadequate feedback loops. Access to on-site MH clinicians and participation in the Learning Collaborative were described as beneficial. CONCLUSION: Findings elucidate how universal MH screening can be sustainably integrated into real-world primary care settings and may facilitate the uptake of American Academy of Pediatrics recommendations for best practices in screening for MH concerns.

Youths' Experiences of Transition from Pediatric to Adult Care: An Updated Qualitative Metasynthesis.

PROBLEM: Improvements in chronic disease management has led to increasing numbers of youth transitioning to adult healthcare. Poor transition can lead to high risks of morbidity and mortality. Understanding adolescents and young adults (AYA) perspectives on transition is essential to developing effective transition preparation. The aim of this metasynthesis was to synthesize qualitative studies assessing the experiences and expectations of transition to adult healthcare settings in AYAs with chronic diseases to update work completed in a prior metasynthesis by Fegran, Hall, Uhrenfeldt, Aagaard, and Ludvigsen (2014). ELIGIBILITY CRITERIA: A search of PubMed, Medline, PsycINFO, and CINAHL was conducted to gather articles published after February 2011 through June 2019. SAMPLE: Of 889 articles screened, a total of 33 articles were included in the final analysis. RESULTS: Seven main themes were found: developing transition readiness, conceiving expectations based upon pediatric healthcare, transitioning leads to an evolving parent role, transitioning leads to an evolving youth role, identifying barriers, lacking transition readiness, and recommendations for improvements. CONCLUSIONS: Findings of this metasynthesis reaffirmed previous findings. AYAs continue to report deficiencies in meeting the Got Transition® Six Core Elements. The findings highlighted the need to create AYA-centered transition preparation which incorporate support for parents. IMPLICATIONS: Improvements in transition preparation interventions need to address deficiencies in meeting the Got Transition® Six Core Elements. More research is needed to identify and address barriers implementing the transition process.

Working Toward an mHealth Platform for Adolescents with Type 1 Diabetes: Focus Groups With Teens, Parents, and Providers.

PURPOSE: The purpose of the study was to explore facilitators and barriers to self-management behaviors in adolescents with type 1 diabetes (T1D) to inform the development of an mHealth platform. METHODS: Eight adolescents with T1D, 9 parents, and 13 health care providers participated in separate focus groups that explored teen self-management behaviors. RESULTS: Adolescents and their parents have distinct preferences for handling diabetes management and use of mHealth technologies. Health care providers support the use of new technologies yet acknowledge concern meeting the potential increased volume of communication requests from teens and families. CONCLUSION: Stakeholders agreed that an ideal mHealth platform would facilitate open communication between teens and their care network and easily integrate with other diabetes technologies. Future directions include incorporating additional feedback from stakeholders to build and modify the mHealth platform. The use of mHealth platforms could be integrated into clinical practice to optimize self-management and support communication between educators, providers, and families in between clinic visits.

The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review.

Objective: The aim of this study is to report the benefits and burdens of palliative research participation on children, siblings, parents, clinicians, and researchers. Background: Pediatric palliative care requires research to mature the science and improve interventions. A tension exists between the desire to enhance palliative and end-of-life care for children and their families and the need to protect these potentially vulnerable populations from untoward burdens. Methods: Systematic review followed PRISMA guidelines with prepared protocol registered as PROSPERO #CRD42018087304. MEDLINE, CINAHL, PsycINFO, EMBASE, Scopus, and The Cochrane Library were searched (2000-2017). English-language studies depicting the benefits or burdens of palliative care or end-of-life research participation on either pediatric patients and/or their family members, clinicians, or study teams were eligible for inclusion. Study quality was appraised using the Mixed Methods Appraisal Tool (MMAT). Results: Twenty-four studies met final inclusion criteria. The benefit or burden of palliative care research participation was reported for the child in 6 papers; siblings in 2; parents in 19; clinicians in 3; and researchers in 5 papers. Benefits were more heavily emphasized by patients and family members, whereas burdens were more prominently emphasized by researchers and clinicians. No paper utilized a validated benefit/burden scale. Discussion: The lack of published exploration into the benefits and burdens of those asked to take part in pediatric palliative care research and those conducting the research is striking. There is a need for implementation of a validated benefit/burden instrument or interview measure as part of pediatric palliative and end-of-life research design and reporting.

Identification of Overweight and Obesity in Low-Income Minority Children by Pediatric Providers and Child Characteristics Associated With Underrecognition.

INTRODUCTION: Childhood overweight and obesity remains prevalent. We sought to identify characteristics associated with correct coding of obese and overweight children ages 2-9 years by pediatric primary care providers (PCPs) in an urban, minority clinic. METHOD: Samples included electronic health records pre- (n = 262) and post- (n = 244) provider training to implement an intervention aiming to improve consistency in obesity prevention and management guidelines from 15 providers. Analysis included descriptive statistics and simple logistic regression. RESULTS: Child characteristics consistently associated with correct coding in both pre- and post-intervention included children with obese body mass index percentiles (vs. overweight) and older-aged children (vs. toddlers). Provider characteristics were not associated. DISCUSSION: Improvements in coding overweight and obese children occurred post-intervention, yet many were missed. Knowledge of characteristics associated with missed coding can inform targeted training for PCPs to implement evidence-based obesity guidelines with full fidelity for all families.

Identifying clinical practice guidelines for the supportive care of children with cancer: A report from the Children's Oncology Group.

Providing evidence-based supportive care for children with cancer has the potential to optimize treatment outcomes and improve quality of life. The Children's Oncology Group (COG) Supportive Care Guidelines Subcommittee conducted a systematic review to identify current supportive care clinical practice guidelines (CPGs) relevant to childhood cancer or pediatric hematopoietic stem cell transplant. Only 22 papers met the 2011 Institute of Medicine criteria to be considered a CPG. The results highlight the paucity of CPGs available to pediatric oncology healthcare professionals and the pressing need to create CPGs using current methodological standards.

Supporting Family Decision-making for a Child Who Is Seriously Ill: Creating Synchrony and Connection.

The families of children with chronic or serious illness are sometimes faced with difficult decisions never previously imagined. We offer a stepwise approach in building a human connection with these families to support them through the decision-making process. We encourage the clinician to stop talking and to actively listen and find common ground. We suggest that offering open and honest information begins with an invitation. We encourage clinicians to explore concepts with the family, including their fears and hopes. We discuss nurturing an emotional connection between the child and family and describe ways to discover a family's preference for involvement in the decision-making process. Central to supporting a family is to place infinite value on the life of their child. We argue that attention to these matters will help the clinician remain in sync with the family to ensure meaningful and high-quality decision-making during highly vulnerable times for families.

The Why Behind the Questions: Question-asking in Parents of Children Newly Diagnosed With Cancer - A Report From the Children's Oncology Group.

PURPOSE: For parents of children newly diagnosed with cancer, the exchange of information during initial educational processes is critical. This focused analysis was completed to describe parent question-asking during the new childhood cancer diagnosis timeframe. DESIGN & METHODS: In previous research of new diagnosis education experiences, parents spoke extensively about asking questions. These data, captured in first level coding, were incorporated across higher level codes to describe how parents processed information after their child's cancer diagnosis. Using constant comparative analysis, we returned to our data to complete a focused analysis of our first level code, Asking Questions. Team members independently coded Asking Questions data from 20 parent interviews, followed by team discussions and consensus agreement for code assignment. RESULTS: Parents asked questions to learn, fill an unmet need, or clarify information. Clinicians asked questions to assess parent learning. CONCLUSION: Question-asking is a technique used by parents and clinicians to communicate new information, assess understanding of provided content, and/or to confirm previously provided information. PRACTICE IMPLICATIONS: Clinicians can benefit from carefully listening to patients/parents and reflecting on the type of questions asked in an effort to understand the reason behind the question. This can be used to guide further education.

National Study of Nursing Research Characteristics at Magnet®-Designated Hospitals.

OBJECTIVE: To describe the research infrastructure, culture, and characteristics of building a nursing research program in Magnet®-designated hospitals. BACKGROUND: Magnet recognition requires hospitals to conduct research and implement evidence-based practice (EBP). Yet, the essential characteristics of productive nursing research programs are not well described. METHODS: We surveyed 181 nursing research leaders at Magnet-designated hospitals to assess the characteristics in their hospitals associated with research infrastructure, research culture, and building a nursing research program. RESULTS: Magnet hospitals provide most of the needed research infrastructure and have a culture that support nursing research. Higher scores for the 3 categories were found when hospitals had a nursing research director, a research department, and more than 10 nurse-led research studies in the past 5 years. CONCLUSIONS: While some respondents indicated their nurse executives and leaders support the enculturation of EBP and research, there continue to be barriers to full implementation of these characteristics in practice.

Identifying a conceptual shift in child and adolescent-reported treatment decision making: "Having a say, as I need at this time".

BACKGROUND: Professional organizations and governments recommend child and adolescent involvement in cancer treatment decision making (TDM) despite minimal evidence that children prefer involvement, how best to include them, and the result of doing so. PROCEDURE: Using descriptive qualitative research methods, we interviewed 20 children ages 9-17 years about their TDM preferences and experiences. We shifted our conceptualizations as findings emerged about how children with cancer viewed their decisional experiences. Results from constant comparative analysis of participant interviews yielded a new construct, "Having a say, as I need at this time" ('Having a Say'), which focuses more broadly on child communication preferences and the dynamism of those preferences. Ten additional interviews confirmed 'Having a Say' results. RESULTS: Children's contextually related 'Having a Say' preferences ranged from not wanting to hear information at this time, to being included in treatment discussions, to choosing a treatment option. Children reported both positive and negative effects of being involved (or not) in treatment discussions as they preferred. Children's preferences assumed the presence and involvement of their parents and doctors. Illness conditions (e.g., stage of treatment; symptom distress) informed child communication preferences more so than the child's age. CONCLUSIONS: The 'Having a Say' construct challenges the dominant shared TDM paradigm, which presumes it is best to involve children in their treatment decisions. 'Having a Say' is both a developmental and conceptual fit for children that can inform future research to develop and test clinical care approaches to meet child and adolescent communication needs.

Modifying Provider Practice To Improve Assessment of Unhealthy Weight and Lifestyle in Young Children: Translating Evidence in a Quality Improvement Initiative for At-Risk Children.

BACKGROUND: We designed a quality improvement (QI) project to address the high prevalence of childhood overweight and obesity (OW/OB) in our patient population and the inconsistencies among primary care providers in recognizing and addressing OW/OB. METHODS: We used mixed methods data collection approach to evaluate a QI project, the Childhood Healthy Behaviors Intervention (CHBI), to improve provider obesity prevention practice in two low-income, predominantly African American pediatric primary care clinics. Electronic record data were extracted from all 2-9 year well visits pre- and postintervention for frequency of appropriate diagnostic coding of OW/OB. We reviewed a random sample of records for details of health habit assessment and counseling documentation. Focused interviews were conducted to elicit provider responses regarding impressions of the intervention. RESULTS: The preintervention sample of records (n = 267) was extracted from 18 providers and the postsample (n = 253) from 19 providers. Providers showed improvement in the recognition of OW/OB with appropriate diagnostic coding (52% pre, 68% post), improvement in assessment of health habits informed by the habit survey (0% pre, 76% post), improvement in counseling of healthy behaviors (86% pre, 92% post), and improvement in goal setting of healthy behaviors (12% pre, 70% post). CONCLUSIONS: Our findings suggest that implementing a time efficient primary care intervention with brief provider training can improve provider recognition of OW/OB, as well as improve provider behavior targeted at childhood obesity prevention. This project contributes needed QI evidence on interventions to prevent and address OW/OB in primary care settings and calls for further work to strengthen implementation in similar contexts.

Processing Information After a Child's Cancer Diagnosis-How Parents Learn.

Parents of a child newly diagnosed with cancer must receive an extensive amount of information before their child's initial hospital discharge; however, little is known about best practices for providing this education. An interpretive descriptive study design was used to describe actual and preferred educational content, timing, and methods among parents of children newly diagnosed with cancer prior to their child's first hospital discharge. Twenty parents of children diagnosed with various malignancies participated in individual interviews 2 to 12 months after their child's diagnosis. Data were analyzed using constant comparative analysis. Education delivery occurred in a telling manner at diagnosis transitioning to a reciprocal process of teaching during the inpatient stay, then primarily back to telling immediately before discharge. Parents expressed a variety of preferred learning styles but noted that their preferences were rarely assessed by health care providers. Multiple factors influenced parents' ability to process educational information received during their child's initial hospitalization. Findings suggest that nursing practices should include assessing for influencing factors, providing anticipatory guidance, and incorporating parents' preferred learning style into the educational plan.

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.