"If We Don't Beat It, How Long Will It Take?" Worries and Concerns of Children with Advanced Cancer and Their Parents.

Navigating pediatric advanced cancer is challenging for children and parents, resulting in increased risk for psychological distress. While research has explored parent worries/concerns, few studies have included children's perspectives. To explore worries/concerns in children with advanced cancer and their parents.

An exploratory qualitative study on factors influencing the level of agreement in symptom reports in child-caregiver dyads.

Objectives: Clinicians often rely on caregiver proxy symptom reports to treat cancer-related symptoms in children. Research has described disagreement between children's and caregivers' symptom reports. Factors influencing the level of agreement is an understudied area.

Factors associated with caregiver strain among mothers and fathers of children with advanced cancer.

Objectives: To characterize caregiver experiences in the context of advanced pediatric cancer by identifying individual (i.e., demographic factors, stress) and family context factors (i.

mHealth Apps in the Digital Marketplace for Pediatric Patients With Cancer: Systematic Search and Analysis.

Background: The substantial increase in smartphone ownership has led to a rise in mobile health (mHealth) app use. Developing tailored features through mHealth apps creates a pathway to address the health care needs of pediatric patients with cancer and their families who have complex care needs. However, few apps are designed specifically to integrate with pediatric cancer care.

Predictors of loneliness among middle childhood and adolescence during the COVID-19 pandemic.

Social contexts (e.g., family, friends) are important in predicting and preventing loneliness in middle childhood (MC) and adolescence; however, these social contexts were disrupted during the COVID-19 pandemic.

COVID-19 impact, resilience, and child quality of life: A dyadic analysis.

COVID-19 public health measures caused significant disruptions to child and caregivers' mental and physical well-being, including quality of life (QoL). However, in samples outside the United States (U.S.

Mixed-method examination of factors associated with adolescent decision-making and involvement in care in the context of advanced cancer.

Objectives: Adolescents with cancer often experience significant symptom burden and aggressive treatment near end-of-life. Increased adolescent involvement in care and decision-making may benefit health outcomes. Limited research has examined factors associated with adolescents' involvement in care in the context of advanced disease.

Successful use of tacrolimus for treatment-refractory neuroblastoma-associated opsoclonus-myoclonus-ataxia syndrome: A case series.

Opsoclonus-myoclonus-ataxia syndrome (OMAS) is an autoimmune central nervous system disorder, primarily manifesting as a paraneoplastic sequalae to neuroblastoma, and characterized by motor disorders and behavioral disturbances. OMAS is typified by aberrant B-cell and T-cell activation. Current treatment involves immunosuppression using corticosteroids, intravenous immunoglobulin, and rituximab.

The Impact of the COVID-19 Pandemic on the Quality of Life of Children With Cancer.

Little is known about the COVID-19 pandemic and its impact on the quality of life (QoL) of children with cancer who may be more vulnerable to the pandemic's effects. We examined associations between COVID-19 exposure and impact on parent-proxy reported QoL in children with cancer, and potential moderation based on the child's cancer status (i.e.

Improving medication adherence monitoring and clinical outcomes through mHealth: A randomized controlled trial protocol in pediatric stem cell transplant.

Medication non-adherence rates in children range between 50% and 80% in the United States. Due to multifaceted outpatient routines, children receiving hematopoietic stem cell transplant (HCT) are at especially high risk of non-adherence, which can be life-threatening. Although digital health interventions have been effective in improving non-adherence in many pediatric conditions, limited research has examined their benefits among families of children receiving HCT.

The experiences of families of children with cancer during the COVID-19 pandemic: A qualitative exploration.

Objectives: The COVID-19 pandemic posed new challenges to physical and psychological well-being. Families with pediatric cancer patients were particularly vulnerable due to changes like children staying at home, hospital policy shifts, and caring for an immunocompromised child. Limited research exists on COVID-19's effects on these families.

Family functioning buffers the consequences of the COVID-19 pandemic for children's quality of life and loneliness.

COVID-19 resulted in mass quarantine measures early in the pandemic. This disruption of daily life widened inequities and made children one of the most vulnerable populations during the crisis. This national, cross-sectional "COVID-Kids" study collected data from almost 500 parent-child dyads using standardized measures to better understand the effects of COVID exposure and impact on children's quality of life and loneliness.

Facebook recruitment for research of children and parents during the COVID-19 pandemic.

The COVID-19 pandemic has created unique challenges for recruitment of adults and children into clinical research. The sudden onset of stay-at-home orders and social distancing enacted in much of the United States created sudden barriers for researchers to recruit participants in-person. Recognizing the critical need to understand the impact of COVID-19 on children and families in real time, studies required an alternative approach.

Factors affecting COVID-19 vaccine hesitancy in parents of children with cancer.

Aim: Little research exists on coronavirus (COVID-19) vaccine hesitancy among caregivers of children with cancer. We aimed to (a) describe vaccine hesitancy in parents of children with cancer for both their child and self, and (b) examine the mediating role of parent-reported COVID impact on the association between COVID exposure and vaccine hesitancy.

Procedure: We conducted a national survey of parents of children with cancer via Facebook and Momcology, a pediatric cancer community-based organization recruited February-May 2021.

Lessons learned in the development of a nurse-led family centered approach to developing a holistic comprehensive clinic and integrative holistic care plan for children with cerebral palsy.

Clinical Problem: Children with cerebral palsy (CP) typically receive care from multiple specialty providers including Developmental Pediatrics, Orthopedics, Physical Medicine, Occupational Therapy, Physical Therapy, Speech Therapy, Clinical Social Work, Clinical Nutrition, Nursing and Orthotists, which often require many individual visits to the hospital annually. The potential for conflicting plans of care is increased by this fragmented approach, which may lead to duplication of services and increased healthcare costs.

Solution: To address the problem and alleviate burden for families, the Comprehensive Cerebral Palsy Program implemented a nurse-led comprehensive interdisciplinary team approach to provide optimal care coordination to patients and families, using an Integrative Holistic Care Plan (IHCP).

Emergency Nurses' Guide to Neonatal Lumbar Punctures.

A neonatal lumbar puncture can present many challenges for emergency nurses that may not be seen with older children or adults. It is imperative that emergency nurses have the knowledge and training related to the procedure to ensure a positive process for the neonate, involved family and health care team members, as well as the overall outcomes of the procedure. This paper provides a practical guide to the essential knowledge for a neonatal lumbar puncture in the emergency department.

Transplantation and Adherence: Evaluating Tacrolimus Usage in Pediatric Patients With Cancer.

Background: Researchers have estimated that about 50% of pediatric patients with chronic illness adhere to tacrolimus therapy, a medication responsible for preventing critical side effects in patients undergoing hematopoietic stem cell transplantation (HSCT).

Objectives: The purpose of this study was to describe patient adherence to tacrolimus by reviewing documentation from the electronic health record and therapeutic drug levels.

Methods: This retrospective descriptive study examined 357 clinic visits by 57 patients undergoing HSCT.

Toward a better understanding: An exploration of provider perceptions in pediatric hematopoietic stem cell transplant adherence.

Pediatric HSCT patients endure complicated treatment regimens, lifestyle modifications, and a lifetime of long-term follow-up. Treatment adherence in this population is understudied and prevalence unknown. Providers (physicians and advanced practice nurses) in this study completed an online-structured questionnaire about definition, assessment, and perceived rates of adherence.

Supportive care and osteopathic medicine in pediatric oncology: perspectives of current oncology clinicians, caregivers, and patients.

Background And Objective: Many children receiving chemotherapy struggle with therapy-induced side effects. To date, there has been no literature investigating the needs, knowledge, or implementation of osteopathic manipulative treatments (OMT) as a supportive care option in pediatric oncology. We hypothesized that pediatric oncology clinicians, caregivers, and patients have (a) limited knowledge of OMT and (b) dissatisfaction with current supportive care options and (c) would be interested in having OMT available during chemotherapy, once educated.

First-in-Human Intravenous Seprehvir in Young Cancer Patients: A Phase 1 Clinical Trial.

Seprehvir (HSV1716) is an oncolytic herpes simplex virus-1 (HSV-1) previously demonstrated to be well tolerated in pediatric patients when administered intratumorally. To determine the safety of administering Seprehvir systemically, we conducted the first-in-human phase I trial of intravenous injection in young patients with relapsed or refractory extra-cranial solid cancers. We delivered a single dose of 5 × 10 infectious units (iu)/kg (maximum dose of 2 × 10) or 2.

Perspectives of Childhood Cancer Symptom-Related Distress: Results of the State of the Science Survey.

Management of symptom-related distress is an important area of pediatric oncology nursing. Participants who attended the Children's Oncology Group (COG) State of the Science Symposium on symptom distress completed an anonymous survey. The purpose was to explore participant perceptions of symptom distress experienced by children receiving cancer treatment on clinical trials, determine how symptom distress is currently assessed at COG institutions, and to identify what interventions are used to reduce symptom distress for these children.