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. The main analysis involved multiple phases of elastic net logistic regression on imputed data to identify important predictors. RESULTS: For 1944 infants, the strongest predictor domain areas included preoperative feeding, demographics/social determinants of health, feeding route, clinical course, and site. Significant findings included: preoperative BF was associated with any HM at S1P discharge (OR = 2.02, 95% CI = 1.74-3.44) and any BF at S2P (OR = 2.29, 95% CI = 1.38-3.80); private/self-insurance was associated with any HM at S1P discharge (OR = 1.91, 95% CI = 1.58-2.47); and Black/African-American infants had lower odds of any HM at S1P discharge (OR = 0.54, 95% CI = 0.38-0.65) and at S2P (0.57, 0.30-0.86). Adjusted odds of HM/BF practices varied among NPC-QIC sites. CONCLUSIONS: Preoperative feeding practices predict later HM and BF for infants with single ventricle congenital heart disease; therefore, family-centered interventions focused on HM/BF during the S1P preoperative time are needed. These interventions should include evidence-based strategies to address implicit bias and seek to minimize disparities related to social determinants of health. Future research is needed to identify supportive practices common to high-performing NPC-QIC sites.

Beyond coping: The role of supportive relationships and meaning making in youth well-being.

INTRODUCTION: The purpose of this study was to identify coping strategies, resources, and strengths that predict well-being in a community-based sample of youth with varying levels of adversity. DESIGN: Grounded in the resilience portfolio model, we used a mixed methods approach with data from a cross-sectional sample of 231 youth ages 8-17. MATERIALS AND METHODS: Data were collected using a survey, participant-generated timeline activity, and brief interview. Measures included assessments of coping and appraisal, resilience resources and assets, and subjective well-being and depression. RESULTS: Active and passive coping strategies predicted subjective well-being and depression. Controlling for demographics and coping, meaning making strengths and supportive relationships were significant predictors of subjective well-being and lower depression, and decreased the impact of adversity on these outcomes. DISCUSSION: The results of this study provide support for the resilience portfolio model in a community-based sample of youth, with relationships as predicted for subjective well-being and symptoms of depression. For both outcomes, family relationships held the strongest associations with positive well-being and lower symptoms of depression. Supportive relationships with peers, meaning making strengths, interpersonal strengths, less passive coping, and fewer adverse life events were also associated with better outcomes. CONCLUSIONS: These findings underscore the need to assess youth resources and strengths and to design interventions that target these protective factors for all youth, regardless of exposure to adversity. CLINICAL RELEVANCE: A theory-informed understanding of resources and strengths that predict youth well-being is essential to inform strengths-based interventions for pediatric research and practice. The resilience portfolio model is a useful framework for understanding predictors of youth well-being.

Transforming acute pain management in children: A concept analysis to develop a new model of nurse, child and parent partnership.

OBJECTIVES: To identify the core components of acute pain management in children, re-conceptualise the process and update the existing model to inform nursing research and clinical practice. BACKGROUND: Acute pain in hospitalised children remains suboptimal, despite extensive nursing research and education. Improvements require a patient-centred approach and a conceptual model which includes the role of parents and partnership. DESIGN: Using Rodgers' Evolutionary method, a concept analysis was conducted to define the core components for effective acute pain management in children. METHODS: A scoping review of peer-reviewed literature from 1990 through 2020 was conducted using the terms "pain management," "pain control," "pain treatment," "multi modal," and "concept*". Abstracts from 85 articles were initially reviewed with 30 articles retained for analysis. Core concepts were identified, defined and synthesised. The PRISMA 2020 checklist was used. RESULTS: A new model was developed from a synthesis of past work which incorporates the role of parents, the complexity of the process and definitions for shared decision-making. Trust, safety, collaborative communication and genuine partnership were identified as the core components for effective pain management in children, with the triadic relationship of nurses, patients and parents in genuine partnership foundational to the nursing process. CONCLUSION: The new model for acute pain management in children transforms the nurse's role from gatekeeper to facilitator, shifting the process from nurse driven to patient-centred. The new collaborative model will promote shared decision-making for individualised pain assessments, interventions and evaluations. RELEVANCE TO CLINICAL PRACTICE: Establishing the nurse, child, parent partnership as an essential foundation to pain management has the potential to expand pain assessments, optimise treatment selections, advancing clinical practice, patient outcomes and nursing science. No Patient or Public Contributions were included in this paper as this was a concept analysis pulling from past works.

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. RESULTS: The timeline activity was easy to administer and well accepted by youth in a community setting. Youth reporting an adverse experience or mental health challenge in the previous year had unique patterns of variability in the timelines, and more frequently reported certain resilience factors, including family support and regulatory, interpersonal, and meaning-making assets. Pandemic-related differences were noted between the two cohorts. CONCLUSIONS: The timeline drawing activity reflects and extends findings from a standard measure of global health. This activity benefits both the participant and the clinician or researcher by helping youth to communicate how they make sense of the world, honoring different ways of knowing and prompting recollection of coping appraisals and resilience factors. PRACTICE IMPLICATIONS: Participant-generated timelines are a developmentally appropriate and interactive strategy for assessing youth perceptions of their internal strengths. In conjunction with traditional assessments, this strategy may support the identification of malleable targets for intervention in practice with youth who have experienced adversity or mental health challenges.

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. DATA SOURCES: We searched peer-reviewed journals for reports of quantitative studies focused on CMC outcomes published between 2008 and 2018. On the basis of a structured screening process, we selected 63 reports that met our inclusion criteria. STUDY APPRAISAL AND SYNTHESIS: We used the methodological framework for scoping studies described by Arskey and O'Malley to map relevant literature in the field and the ECHO model to categorize studies according to three health outcome domains (economic, clinical, and humanistic). RESULTS: The terminology used to describe and classify CMC differed across studies depending on outcome domain. Two thirds of the reports focused on economic outcomes; fewer than a quarter included child or family quality of life as an outcome. A majority of studies used a single source of data, with robust analyses of administrative, payer, and publicly available data. CONCLUSIONS AND IMPLICATIONS OF KEY FINDINGS: Research on CMC and their families would benefit from standardization of terms and classification systems, the use of measurement strategies that map humanistic outcomes as trajectories, and more attention to outcomes identified as most meaningful to CMC and their families.

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. The FN-AIM was implemented as an educational tool to support student skill development as part of a graduate family nursing course in the United States. Through a self-assessment of competence in family nursing practice, 30 students demonstrated an enhanced ability to articulate the distinction between family as context and family as system approaches to family nursing after using the FN-AIM mapping approach. The FN-AIM may be a useful strategy for supporting systems thinking in preparation for clinical skills development in graduate nursing students.

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. Bivariate analyses were conducted to compare scores by factors at the community, school, nurse, and child levels. Results suggest that school nurses have positive appraisals of their family nursing practice, though scores were generally lower in the context of ADHD compared to asthma. Participants with a graduate degree reported greater skill in working with families, whereas novice nurses reported less confidence working with families and less comfort initiating family involvement in care. Results suggest that interventions at the nurse and school levels may support enhanced family nursing practice by nurses caring for students with chronic conditions.

Psychometric testing of the Iceland Health Care Practitioner Illness Beliefs Questionnaire among school nurses.

BACKGROUND: Beliefs have been found to have an effect on how people deal with illness. Therefore, knowing healthcare practitioners' beliefs about specific high frequency illnesses are vital when caring for vulnerable populations such as school-age children with chronic illnesses or disorders. AIM: To psychometrically test the Iceland Health Care Practitioner Illness Beliefs Questionnaire for healthcare professionals who are working with families of school-age children with asthma and attention deficit/hyperactivity disorder. DESIGN: The Iceland Health Care Practitioner Illness Beliefs Questionnaire is a 7-item Likert-type instrument with four additional open-ended questions that was developed from the Iceland Family Illness Belief Questionnaire. The questionnaire is designed to measure a provider's beliefs about their understanding of the meaning of the illness situation for families. The questionnaire was administered to 162 school nurses in Iceland and the state of Minnesota. METHOD: Two condition-specific versions of the Iceland Health Care Practitioner Illness Beliefs Questionnaire were developed in this study: one to measure beliefs about families of children with asthma and one to measure beliefs about families of children with attention deficit hyperactivity disorder. Higher scores on the questionnaire indicate that healthcare professionals are more confident in their illness beliefs. After initial development, the questionnaire was translated into English. Participants completed the questionnaire using an online survey platform and parallel study procedures in both countries. RESULTS: Based on exploratory factor analysis using principal component analysis, the Iceland Health Care Practitioner Illness Beliefs Questionnaire was found to have a one-factor solution with good construct validity (Cronbach's α = 0.91). Confirmatory factor analysis supported the one-factor solution (Cronbach's α = 0.91). CONCLUSION: This instrument is a promising tool for measuring illness beliefs among healthcare practitioners in clinical and research settings.

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. This article presents four strategies-curate, connect, collaborate, and contribute-for establishing and growing a social media presence that fits one's professional goals and time availability. Family nurses who leverage social media using these strategies can strengthen existing CoPs and at the same time bridge networks to reach new audiences, such as family advocacy groups, policy makers, educators, practitioners, and a wide array of other extended networks.

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. Data collection included monthly healthcare service utilization (HCSU) calendars and annual surveys focused on care coordination outcomes. MATERIALS AND METHODS: One hundred sixty-three families were enrolled in the 30-month TeleFamilies RCT. Subjects were 2-15 years of age at enrollment. HCSU data were collected by parent/guardian self-report using mail, e-mail, telephone, or texting. Surveys were collected by mail. Incentives were provided for completed surveys after 8 months to improve collection returns. Outcome measures were the number of HCSU calendars and surveys returned, the return interval, data collection mode, and incentive impact. RESULTS: Return rates of 90% for HCSU calendars and 82% for annual surveys were achieved. Mean return intervals were 72 and 65 days for HCSU and surveys, respectively. Survey response increased from 55% to 95% after introduction of a gift card and added research staff. CONCLUSIONS: High return rates for HCSU calendars and health-related surveys are attainable but required a flexible and personnel-intensive approach to collection methods. Family preference for data collection approach should be obtained at enrollment, should be modified as needed, and requires flexible options, training, intensive staff/family interaction, and patience.

Meeting the needs of children with medical complexity using a telehealth advanced practice registered nurse care coordination model.

Effective care coordination is a key quality and safety strategy for populations with chronic conditions, including children with medical complexity (CMC). However, gaps remain in parent report of the need for care coordination help and receipt of care coordination help. New models must close this gap while maintaining family-centered focus. A three-armed randomized controlled trial conducted in an established medical home utilized an advanced practice registered nurse intervention based on Presler's model of clinic-based care coordination. The model supported families of CMC across settings using telephone only or telephone and video telehealth care coordination. Effectiveness was evaluated from many perspectives and this paper reports on a subset of outcomes that includes family-centered care (FCC), need for care coordination help and adequacy of care coordination help received. FCC at baseline and end of study showed no significant difference between groups. Median FCC scores of 18.0-20.0 across all groups indicated high FCC within the medical home. No significant differences were found in the need for care coordination help within or between groups and over time. No significant difference was found in the adequacy of help received between groups at baseline. However, this indicator increased significantly over time for both intervention groups. These findings suggest that in an established medical home with high levels of FCC, families of CMC have unmet needs for care coordination help that are addressed by the APRN telehealth care coordination model.

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. DESIGN: A qualitative descriptive study design using focus group data. METHODS: Six focus groups with 32 school nurses were conducted in Reykjavik (n = 17) and St. Paul (n = 15) using the same protocol between September 2008 and January 2009. Descriptive content analytic and constant comparison strategies were used to categorize and compare how school nurses coordinated care, which resulted in the development of an International School Nurse Asthma Care Coordination Model. FINDINGS: Participants in both countries spontaneously described a similar asthma care coordination process that involved information gathering, assessing risk for asthma episodes, prioritizing healthcare needs and anticipating and planning for student needs at the individual and school levels. This process informed how they individualized symptom management, case management and/or asthma education. School nurses played a pivotal part in collaborating with families, school and healthcare professionals to ensure quality care for youth with asthma. CONCLUSIONS: Results indicate a high level of complexity in school nurses' approaches to asthma care coordination that were responsive to the diverse and changing needs of students in school settings. The conceptual model derived provides a framework for investigators to use in examining the asthma care coordination process of school nurses in other geographic locations.

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. Coordinating this multi-faceted care within the HCH is challenging. This article describes the need for specialized models of care coordination for CMC. Two models of care coordination for CMC were developed to address this challenge. The TeleFamilies Model of Pediatric Care Coordination uses an advanced practice registered nurse care (APRN) coordinator embedded within an established HCH. The PRoSPer Model of Pediatric Care Coordination uses a registered nurse/social worker care coordinator team embedded within a specialty care system. We describe key findings from implementation of these models, and conclude with lessons learned. Replication of the models is encouraged to increase the evidence base for care coordination for the growing population of children with medical complexities.

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

ABSTRACT: 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. The growing and aging CF population combined with the provider workforce shortage have increased the demand for qualified CF providers. Nurse practitioners (NPs) and physician assistants (PAs) have been providing CF care for decades, but most learned on the job. The Leadership and Education for Advanced Practice Provider (LEAPP) fellowship in CF care aims to address the provider gap, ease transition to practice, and ensure access to specialized care. Unlike other institutional based joint NP/PA fellowships, LEAPP was designed to train providers at various locations across the national CF care center network. The program is innovative in several ways: (1) LEAPP employs a flipped classroom that pairs an online curriculum with case-based virtual discussion with content experts from the CF care network; (2) fellows receive mentored clinical training at their home CF center; (3) LEAPP partnered with a university-based team to ensure best practices and evaluation for adult learners; and (4) LEAPP promotes organizational enculturation through program components of professional mentoring, quality improvement, and leadership. This innovative approach may be suitable for other complex conditions that require highly specialized care, such as sickle cell disease, spina bifida, and solid organ transplant.

Correlates of mothers' perception of their communities' social capital: a community-based study.

Psychosocial issues have been recognized as important factors in children's health for decades. This study documents the relation among several important psychosocial variables (e.g., mothers' depressive symptoms) and a new instrument that assesses parents' perception of their communities' social capital. Mothers were recruited from their children's primary care (PC) pediatricians' offices within the Southwestern Ohio Ambulatory Research Network or from a children's hospital developmental clinic (DC). Mothers completed a questionnaire that included the Social Capital Scale (SCS), Children with Special Health Care Needs Screener (CSHCNS), Pediatric Quality of Life Inventory, Maternal Social Support Index and the Center for Epidemiologic Studies Depression Scale (CES-D). Mothers were sorted into three subgroups based on site of recruitment (PC or DC) and results of the CSHCNS. The sample (N = 620) was also sorted into terciles based on SCS scores. Mean SCS was about 73 for each of the three subgroups. Compared to mothers in the highest SCS tercile, mothers in the lowest SCS tercile reported lower education, lower income and higher CES-D median scores. The SCS subscale "sense of belonging" had an inverse correlation with CES-D scores (r = -.248, p < 0.001). Mothers from primary care and sub-specialty clinics had similar perceptions about their communities' social capital. Compared to mothers in the highest one third of SCS scores, mothers in the lowest one third were more likely to report less education and income as well as more depressive symptoms. A decreased sense of belonging in their communities was also correlated with more depressive symptoms. The SCS is a new useful tool for investigators and clinicians who work with children and their families.

The international school nurse asthma project: barriers related to asthma management in schools.

AIM: This article is a report of an international study of barriers to asthma care from the perspectives of school nurses in Reykjavik, Iceland and St. Paul, Minnesota, in the context of their schools, communities and countries. BACKGROUND: Globally, asthma affects the health and school performance of many adolescents. School nurses play a key role by providing care to adolescents with asthma in school settings. Understanding universal barriers to asthma management in schools is important for developing interventions that are effective in multiple societal contexts. DESIGN: Exploratory, descriptive study. METHODS: Parallel studies were conducted from September 2008-January 2009, through six focus groups among school nurses (n = 32, in Reykjavik n = 17 and St. Paul n = 15) who were managing asthma in adolescents. Focus groups were audio-recorded and transcribed verbatim in English or Icelandic. The Icelandic transcripts were translated into English. Descriptive content analytic techniques were used to systematically identify and categorize types of barriers to asthma care. RESULTS: School nurses in both countries identified common barriers, such as time constraints, communication challenges and school staff barriers. The primary difference was that St. Paul school nurses identified more socio-economic and health access barriers than school nurses in Reykjavik. CONCLUSION: Greater cultural and linguistic diversity and socio-economic differences in the student population in St. Paul and lack of universal healthcare coverage in the US contributed to school nurses' need to focus more on asthma management than school nurses in Reykjavik, who were able to focus more on asthma prevention and education.

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. A total of 18 risk and protective variables were identified; all 18 variables were characteristics of the microsystem or mesosystem, emphasizing school absences' proximity to variables within inner ecological systems rather than the exosystem or macrosystem. Implications for future studies and health infrastructure are discussed.

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. RESULTS: The youth engaged readily in the timeline activity and found the activity easy to understand. Relationships among appraisal, coping, subjective well-being and depression were in the hypothesized directions, suggesting the tool supports a valid assessment of appraisals and coping in this age group. DISCUSSION: The timelining activity is well-accepted by youth and supports reflexivity, prompting youth to share insights on strengths and resilience. The tool may augment existing practices for assessing and intervening in youth mental health in research and practice.

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. We calculated propensity scores for feeding exposures, then fitted Poisson and logistic regression models to compare outcomes between propensity-matched cohorts. Participants included 2491 infants (68 sites). Estimates for all outcomes were better in HM/breastfeeding groups. Infants fed exclusive HM before stage 1 palliation (S1P) had lower odds of preoperative necrotizing enterocolitis (odds ratio [OR], 0.37 [95% CI, 0.17-0.84]; P=0.017) and shorter S1P length of stay (rate ratio [RR], 0.87 [95% CI, 0.78-0.98]; P=0.027). During the S1P hospitalization, infants with high HM had lower odds of postoperative necrotizing enterocolitis (OR, 0.28 [95% CI, 0.15-0.50]; P<0.001) and sepsis (OR, 0.29 [95% CI, 0.13-0.65]; P=0.003), and shorter S1P length of stay (RR, 0.75 [95% CI, 0.66-0.86]; P<0.001). At stage 2 palliation, infants with any HM (RR, 0.82 [95% CI, 0.69-0.97]; P=0.018) and any breastfeeding (RR, 0.71 [95% CI, 0.57-0.89]; P=0.003) experienced shorter length of stay. Conclusions Infants with single ventricle congenital heart disease in high-HM and breastfeeding groups experienced multiple significantly better outcomes. Given our findings of improved health, strategies to increase the rates of HM/breastfeeding in these patients should be implemented. Future research should replicate these findings with granular feeding data and in broader congenital heart disease populations, and should examine mechanisms (eg, HM components, microbiome) by which HM/breastfeeding benefits these infants.