Stress in Family Caregivers of Children with Chronic Health Conditions: A Case-Control Study.

Objectives: This study analyzed the stress experienced by family caregivers of children with special healthcare needs and identified associated factors.

Methods: A case-control study was conducted with the "cases" being caregivers of children with chronic conditions and the "controls" being caregivers of healthy children. Recruitment was carried out via social media and complemented by snowball sampling.

A national postgraduate nurse practitioner and physician assistant fellowship in cystic fibrosis: An innovative approach to the provider shortage in complex and rare disease.

Cystic fibrosis (CF) is a complex life-limiting genetic condition that affects the respiratory, digestive, reproductive system, and sweat glands. Advances in treatment have led to improved survival and quality of life. Today, most persons with CF live to adulthood but require highly specialized care at accredited CF Care Centers.

Human Milk Feeding and Direct Breastfeeding Improve Outcomes for Infants With Single Ventricle Congenital Heart Disease: Propensity Score-Matched Analysis of the NPC-QIC Registry.

Background Infants with single ventricle congenital heart disease undergo 3 staged surgeries/interventions, with risk for morbidity and mortality. We estimated the effect of human milk (HM) and direct breastfeeding on outcomes including necrotizing enterocolitis, infection-related complications, length of stay, and mortality. Methods and Results We analyzed the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) registry (2016-2021), examining HM/breastfeeding groups during stage 1 and stage 2 palliations.

Predictors of Human Milk Feeding and Direct Breastfeeding for Infants with Single Ventricle Congenital Heart Disease: Machine Learning Analysis of the National Pediatric Cardiology Quality Improvement Collaborative Registry.

Objective: To identify factors that support or limit human milk (HM) feeding and direct breastfeeding (BF) for infants with single ventricle congenital heart disease at neonatal stage 1 palliation (S1P) discharge and at stage 2 palliation (S2P) (∼4-6 months old).

Study Design: Analysis of the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) registry (2016-2021; 67 sites). Primary outcomes were any HM, exclusive HM, and any direct BF at S1P discharge and at S2P.

Using data-driven analytics and ecological systems theory to identify risk and protective factors for school absenteeism among secondary students.

Chronic absenteeism is an administrative term defining extreme failure for students to be present at school, which can have devastating long-term impacts on students. Although numerous prior studies have investigated associated variables and interventions, there are few studies that utilize both theory-driven and data-informed approaches to investigate absenteeism. The current study applied data-driven machine learning techniques, grounded in "The Kids and Teens at School" (KiTeS) theoretical framework, to student-level data (N = 121,005) to identify risk and protective variables that are highly associated with school absences.

Human milk feeding and direct breastfeeding improve outcomes for infants with single ventricle congenital heart disease: Propensity score matched analysis of the NPC-QIC registry.

Background: Infants with single ventricle (SV) congenital heart disease (CHD) undergo three staged surgeries/interventions, with risk for morbidity and mortality. We estimated the effect of human milk (HM) and direct breastfeeding (BF) on outcomes including necrotizing enterocolitis (NEC), infection-related complications, length of stay (LOS), and mortality.

Methods: We analyzed the National Pediatric Cardiology Quality Improvement Collaborative registry (2016-2021), examining HM/BF groups during stage 1 (S1P) and stage 2 (S2P) palliations.

Patterns of Breastfeeding and Human Milk Feeding in Infants with Single-Ventricle Congenital Heart Disease: A Population Study of the National Pediatric Cardiology Quality Improvement Collaborative Registry.

Infants with single-ventricle (SV) congenital heart disease (CHD) undergo staged surgical and/or catheter-based palliation and commonly experience feeding challenges and poor growth. Little is known about human milk (HM) feeding or direct breastfeeding (BF) in this population. To determine (1) HM and BF prevalence for infants with SV CHD, and (2) whether BF at neonatal stage 1 palliation (S1P) discharge is associated with any HM at stage 2 palliation (S2P; ∼4-6 months old).

Assessment of Youth Coping and Appraisals Through a Timelining Activity: Validation and Utility of a Tool for Pediatric Research and Practice.

Introduction: Many tools to assess coping in youth fail to engage youth meaningfully in the assessment process. This study aimed to evaluate a brief timeline activity as an interactive way to assess appraisal and coping in pediatric research and practice.

Method: We used a mixed method convergent design to collect and analyze survey and interview data from 231 youths aged 8-17 years in a community-based setting.

Biomarkers of stress in caregivers of children with special health care needs: A protocol for systematic review.

Background: Children with Special Health Care Needs (CSHCN) require greater attention from family caregivers as they present temporary or permanent physical, developmental, behavioral, or emotional issues. This demand for care generates overload and stress among family caregivers. So far, there is no study that gathers the available literature regarding the use of biomarkers to assess stress among caregivers of CSHCN.

Participant-generated timelines as a novel strategy for assessing youth resilience factors: A mixed-methods, community-based study.

Purpose: The purpose of this study was to explore youth perceptions of resilience through participant-generated timelines as a potential new strategy for nursing research and practice.

Design And Methods: We used a concurrent triangulation design to collect and analyze qualitative and quantitative data from a statewide, community-based sample of 448 youth ages 8 to 17 years. We collected three sources of data during two waves of data collection in 2019 and 2021: a participant-generated timeline, a brief structured interview, and a PROMIS pediatric global health measure.

Family-Centered Care: How Close Do We Get When Talking to Parents of Children Undergoing Diagnosis for Autism Spectrum Disorders?

Autism spectrum disorder (ASD) affects 1:59 children, yet little is known about parents' perceptions of family-centered care (FCC) during the diagnostic process leading up to diagnosis. This mixed-methods study explored key elements of FCC from 31 parents of children recently diagnosed with ASD using parallel qualitative and quantitative measures. Parents rated highly their receipt of FCC and discussed ways providers demonstrated FCC.

Development and Testing of the Preparation for Labor and Birth Instrument.

Objective: To develop and assess the reliability and validity of a new instrument used during the third trimester of pregnancy to measure women's confidence in their ability to achieve physiologic birth, the Preparation for Labor and Birth (P-LAB) instrument.

Design: Two-phase instrument development study that consisted of item generation and a prospective field test.

Setting: Field testing occurred in five midwestern U.

Teaching Systems Thinking for Advanced Family Nursing Practice: A Theory-Based Tool.

Systems thinking is essential for advanced family nursing practice, yet this skill is complex and not innate. The Family Nursing Assessment and Intervention Map (FN-AIM) was developed to support student development of systems thinking competencies for Family Systems Nursing practice (see Marigold Family Case Study). The FN-AIM is a pedagogical tool grounded in a family systems framework for nursing with a focus on core family processes as a foundation for interventions.

Outcomes research on children with medical complexity: A scoping review of gaps and opportunities.

Background: There has been a recent, rapid increase in the number of studies of children with medical complexity (CMC) and their families. There is a need for attention to gaps and patterns in this emerging field of study.

Objectives: The purpose of this scoping review was to identify patterns and gaps in the evidence related to classification systems, data, and outcomes in studies of CMC.

Identifying and Communicating Postdischarge Goals for Hospitalized Children With Medical Complexity: A Process Improvement Pilot in a Specialty Pediatric Setting.

Introduction: Family-centered communication at transitions of care can decrease readmissions and costs for children with medical complexity (CMC). The purpose of this quality improvement project was to improve the communication of postdischarge goals for CMC in a pediatric specialty setting.

Methods: We used process improvement strategies to implement a Post-Hospitalization Action Grid (PHAG) and a standardized discharge handoff process.

School Nurse Perceptions of Nurse-Family Relationships in the Care of Elementary Students With Chronic Conditions.

The purpose of this study was to explore school nurse perceptions of the nurse-family relationship in the care of elementary students with asthma and attention-deficit hyperactivity disorder (ADHD). A cross-sectional survey design was used to collect data from 97 school nurses in Minnesota. The Family Nursing Practice Scale measured nurses' perceptions of their family nursing practice.

Health-Related Quality of Life Outcomes of a Telehealth Care Coordination Intervention for Children With Medical Complexity: A Randomized Controlled Trial.

The purpose of this study was to explore health-related quality of life (HRQL) and family impact in the context of an advanced practice registered nurse-delivered telehealth care coordination intervention for children with medical complexity (CMC). This was a secondary outcomes analysis of a randomized controlled trial with 163 families of CMC in an existing medical home. HRQL and family impact were measured using the PedsQL measurement model.

Strategies for Developing Family Nursing Communities of Practice Through Social Media.

This discussion article presents communities of practice (CoPs) and bridging social capital as conceptual frameworks to demonstrate how social media can be leveraged for family nursing knowledge, scholarship, and practice. CoPs require a shared domain of interest, exchange of resources, and dedication to expanding group knowledge. Used strategically and with a professional presence, mainstream social media channels such as Twitter, Facebook, and YouTube can support the family nurse in developing and contributing to CoPs related to family nursing.

The Impact of Telehealth and Care Coordination on the Number and Type of Clinical Visits for Children With Medical Complexity.

Introduction: The purpose of this analysis was to evaluate the effects of an advanced practice nurse-delivered telehealth intervention on health care use by children with medical complexity (CMC). Because CMC account for a large share of health care use costs, finding effective ways to care for them is an important challenge requiring exploration.

Method: This was a secondary analysis of data from a randomized clinical trial with a control group and two intervention groups.

Pediatric Care Coordination: Lessons Learned and Future Priorities.

A fundamental component of the medical home model is care coordination. In Minnesota, this model informed design and implementation of the state's health care home (HCH) model, a key element of statewide healthcare reform legislation. Children with medical complexity (CMC) often require care from multiple specialists and community resources.

Strategies to Maximize Data Collection Response Rates in a Randomized Control Trial Focused on Children with Medical Complexity.

Introduction: Obtaining complete and timely subject data is key to the success of clinical trials, particularly for studies requiring data collected from subjects at home or other remote sites. A multifaceted strategy for data collection in a randomized controlled trial (RCT) focused on care coordination for children with medical complexity is described. The influences of data collection mode, incentives, and study group membership on subject response patterns are analyzed.

Effects of a Telehealth Care Coordination Intervention on Perceptions of Health Care by Caregivers of Children With Medical Complexity: A Randomized Controlled Trial.

Introduction: The purpose of this study was to evaluate the effect of advanced practice registered nurse (APRN) telehealth care coordination for children with medical complexity (CMC) on family caregiver perceptions of health care.

Method: Families with CMC ages 2 to 15 years (N = 148) were enrolled in a three-armed, 30-month randomized controlled trial to test the effects of adding an APRN telehealth care coordination intervention to an existing specialized medical home for CMC. Satisfaction with health care was measured using items from the Consumer Assessment of Healthcare Providers and Systems survey at baseline and after 1 and 2 years.

Development of an International School Nurse Asthma Care Coordination Model.

Aim: To identify and compare how school nurses in Reykjavik, Iceland and St. Paul, Minnesota coordinated care for youth with asthma (ages 10-18) and to develop an asthma school nurse care coordination model.

Background: Little is known about how school nurses coordinate care for youth with asthma in different countries.