Long-Term Urinary and Sexual Outcomes in Pediatric Genitourinary Rhabdomyosarcoma Survivors: A Qualitative Study.

Purpose: Genitourinary rhabdomyosarcoma (GU-RMS) often requires multimodal therapy treatment including radiation, chemotherapy, and radical surgery for disease control. The long-term effects of the disease and associated treatments are unclear. We sought to investigate the long-term genitourinary quality of life for adult survivors of pediatric GU-RMS.

Children and Youth with Special Health Care Needs: Progress Towards More Family-Centered Systems of Care.

Children and youth with special health care needs have increasingly been included in community and society over the past 50 years. Changing definitions and programs in the education, health, and public health/Title V sectors document this greater inclusion. The most profound change was in the education system, with the passage of legislative mandates for inclusion and parental rights.

A Qualitative Descriptive Study Exploring the Systemic Challenges of Caring for Children With Medical Complexity at Home.

Introduction: The purpose of this study is to explore challenges within the home care system encountered by parental caregivers of children with medical complexity in Massachusetts.

Method: A qualitative descriptive study was completed with 11 parental caregivers interviewed.

Results: Using conventional content analysis of transcripts, three themes emerged: (1) lack of discharge preparedness causes emotional distress, (2) care becomes increasingly complex creating new unanticipated challenges, and (3) psychological toll of parents assuming provider role.

Tools used to measure the impact of comorbidities on surgical outcomes in children with complex chronic conditions: A scoping review.

Aim: To identify and describe assessment tools used to measure the impact of comorbidities on postoperative outcomes in children with complex chronic conditions (CCC).

Method: This was a scoping review using five electronic databases. The search was conducted in March 2022 by a medical librarian.

Caring for children with medical complexity at home: An integrative review.

Problem: Despite reporting significant systemic barriers to providing care, burden among parental caregivers of children with medical complexity (CMC) is often attributed to stressors related to disease management. The relationship between parental caregiver burden and systemic barriers within the healthcare bureaucracy, as defined by Ray's Theory of Bureaucratic Caring (BCT), has not been explored. The purpose of this integrative review was to examine which elements of the bureaucratic healthcare system are contributing to burden among parental caregivers of CMC living at home.

Parental Caregiver Expectations and Satisfaction Following Hip Reconstruction and Spinal Fusion in Children With Cerebral Palsy.

Children with severe (Gross Motor Function Classification System [GMFCS] IV-V) cerebral palsy (CP) exhibit profound physical and developmental impairments and require assistance for all activities of daily living. No curative treatments exist although surgical procedures to correct underlying hip and spine deformities can improve their quality of life. Despite the efficacy of these surgeries, little is known regarding parental caregivers' expectations specific to surgical outcomes and their satisfaction with surgical outcomes.

De-adopting low-value care: The missing step in evidence-based practice?

Background: Low-value care provides little or no benefit to pediatric patients, has the potential to cause harm, waste healthcare resources, and increase healthcare costs. Nursing has a responsibility to identify and de-adopt low-value practices to help promote quality care.

Purpose: 1) Describe the process of identifying and de-adopting low-value clinical practices guided by a conceptual model using a case study approach.

Parental caregivers' perception of their transition from hospital to home in children with cerebral palsy who have undergone orthopedic surgery.

Purpose: Evaluate parental perception of the quality of discharge teaching, readiness for discharge, and the impact of these on post discharge coping difficulty and resource utilization in children with cerebral palsy (CP) following surgery.

Design And Methods: Prospective cohort study conducted from September 2017-March 2021 at a pediatric academic medical center. Demographics were collected pre-operatively.

Assessing Diabetes Distress in Emerging Adults With Type 1 Diabetes: Development and Validation of the Problem Areas in Diabetes-Emerging Adult Version.

Objectives: Emerging adults (18 to 30 years of age) with type 1 diabetes experience suboptimal glycemic and psychological outcomes compared with other groups. The emotional burden of the unending self-care needs of diabetes management appears to be related to these poor health outcomes. However, there is no validated measure of this emotional burden in the developmental context of emerging adulthood.

Is There a Relationship Between Youth Bullying and Internet Addiction? An Integrative Review.

Youth bullying is a global public health problem; Internet addiction is on the rise globally among youths. Because the linkage between these behaviors has not been clearly explicated, this integrative review evaluated the relevant empirical evidence. A search of five electronic databases identified 2,761 original citations published between January 2000 and May 2019.

Determining factors that influence parents' perceptions of telehealth provided in a pediatric gastroenterological practice: A quality improvement project.

Background: In response to the COVID-19 pandemic, local and institutional guidelines restricted non-emergent, in-person visits in outpatient specialty clinics. Nurse practitioners (NPs) in pediatric gastroenterology clinics immediately shifted their practice to telehealth (TH).

Local Problem: The shift to TH necessitated a change in practice.

Direct care nurses' perceptions of their roles in clinical research: An integrated review of the literature.

Purpose: To review the extant literature relevant to perceptions by direct care nurses toward clinical research endeavors.

Design: An integrative review guided by the socioecological model was conducted.

Methods: Five databases were searched to identify relevant peer-reviewed articles; there was no limitation on publication date.

Engaging Social Media Influencers to Recruit Hard-to-Reach Populations.

Background: Though clinical researchers have begun to use social media platforms to recruit participants, social media influencers are innovative community connectors to further expand recruitment reach, especially in hard-to-reach populations.

Objectives: The purpose of this methods article is to provide a step-by-step guide for engaging social media influencers for virtual participant recruitment.

Methods: There are multiple steps for researchers to follow, including preplanning, institutional review board approval, engaging with influencers, the pitch, the post, and results dissemination.

Health-related quality of life and caregiver burden after hip reconstruction and spinal fusion in children with spastic cerebral palsy.

Aim: To evaluate the effect of hip reconstruction or spinal fusion on health-related quality of life (HRQoL) in non-ambulatory children with spastic cerebral palsy (CP) and caregiver burden.

Method: This was a prospective, longitudinal study of changes in HRQoL and caregiver burden over the 5 years after surgical correction of hip instability or scoliosis in children with bilateral spastic CP classified in Gross Motor Function Classification levels IV or V. Serial parent proxy measures of HRQoL and caregiver burden were obtained before and 6 weeks, and 3, 6, 9, 12, 24, and 60 months after surgery using the Caregiver Priorities and Child Health Index of Life with Disabilities and the Assessment of Caregiver Experience with Neuromuscular Disease.

Telemedicine and Health Equity During COVID-19 in Pediatric Gastroenterology.

Introduction: Telehealth (TH) services rapidly expanded during the COVID-19 pandemic. This rapid deployment precluded the opportunity for initial planning of implementation strategies. The purpose of the quality improvement project was to understand the needs of nurse practitioners and examine TH procedures and interventions designed to promote high-quality, equitable health care for pediatric patients with gastrointestinal concerns.

DNP scholarly projects: Unintended consequences for academic-practice partnerships.

With the rapid proliferation of Doctor of Nursing Practice (DNP) programs, academic-practice partnerships are critical in the implementation of rigorous and valuable scholarly projects. However, the failure to develop meaningful partnerships can have unintended consequences, particularly when students and practice sites do not have the preparation and support to navigate these partnerships. Four case studies are presented that explore the issues of preserving autonomy, practicing stewardship, imposing unfair burden and maintaining project fidelity.

Parents' Perceptions of Emerging Adults With Congenital Heart Disease: An Integrative Review of Qualitative Studies.

Background: As the primary caregivers for children with congenital heart disease (CHD), parents' perceptions are important for emerging adults to achieve independence. This integrative review of qualitative studies aimed to describe parents' perceptions of emerging adults with CHD.

Method: Seven electronic databases were searched.

The Efficacy of Antihistamines in Preventing Reactions to Infliximab in Patients With Crohn Disease/Ulcerative Colitis: A Review of the Evidence.

Inflammatory bowel diseases, including Crohn disease and ulcerative colitis, are most often diagnosed during adolescence and young adulthood, with a rising incidence in pediatric populations. Infliximab is an effective treatment option for Crohn disease and ulcerative colitis. The most common adverse event with infliximab is an infusion reaction.

How Do the Challenges of Emerging Adulthood Inform our Understanding of Diabetes Distress? An Integrative Review.

Purpose Of Review: Emerging adulthood (ages 18-29) presents many emotional, social, and developmental challenges that can contribute to an increased sense of burden when managing type 1 diabetes (T1D). Diabetes distress (DD) is the concept that captures the emotional burden, frustrations, and worries resulting from living with T1D. This integrative review sets out to examine the impact of developmental context by answering this question: How do the challenges of emerging adulthood inform our understanding of DD?

Recent Findings: DD is highly prevalent in emerging adults and occurs at higher rates than in other age groups.