Family engagement in paediatric acute care settings: A realist review.

AIM: To create a programme theory of family engagement in paediatric acute care to explicate the relationships between contexts and mechanisms of family engagement that align with family, direct care providers and healthcare organization outcomes. DESIGN: Realist review and synthesis. DATA SOURCES: PubMed, CINAHL, PsycINFO and Web of Science searches for the 2.5-year period (July 2019-December 2021) following our 2021 scoping review. REVIEW METHODS: Following methods described by Pawson and Rycroft-Malone, we defined the scope of the review, searched for and appraised the evidence, extracted and synthesized study findings and developed a supporting narrative of our results. RESULTS: Of 316 initial citations, 101 were included in our synthesis of the final programme theory. Contexts included family and direct care provider individualism, and the organizational care philosophy and environment. Mechanisms were family presence, family enactment of a role in the child's care, direct care providers facilitating a family role in the child's care, unit/organizational promotion of a family role, relationship building and mutually beneficial partnerships. Outcomes were largely family-focussed, with a paucity of organizational outcomes studied. We identified four context-mechanism-outcome configurations. CONCLUSION: This realist review uncovered underlying contexts and mechanisms between patients, direct care providers and organizations in the family engagement process and key components of a mutually beneficial partnership. Given that successful family engagement requires direct care provider and organizational support, future research should expand beyond family outcomes to include direct care providers, particularly nurses and healthcare organization outcomes. IMPACT: The final programme theory of family engagement in paediatric acute care provides a roadmap for clinicians to develop complex interventions to engage families and evaluate their impact. The components of our final programme theory reflect family engagement concepts that have been evolving for decades. PATIENT OR PUBLIC CONTRIBUTION: The team conducting this review included members from the practice setting (JT & KG). In the future, as we and others use this model in practice, we will seek input for refinement from clinicians, patients and caregivers.

Developing a Family Resource: Considerations for Family Member Research Participation.

When individuals participate in health care research, the choice often affects the entire family. Researchers are responsible for protecting participants and minimizing any burdens the research may place on them. Resources to educate potential study participants about these issues from a family perspective are lacking. A family-focused, evidence-based resource was created for individuals and families to prompt discussion prior to their consenting to enrollment in research. The resource includes key relevant questions to consider related to their study participation and was revised based on input from family nurse scientists and a hospital-based family advisory group. This resource raises awareness of the importance of employing a family lens when designing research and during the recruitment and enrollment of participants. Adopting a family lens in health care research will support the participant's ability to make an informed choice regarding participation and may ultimately enhance the experience of participants and their families and study outcomes.

Nurses' Experiences Implementing e PED : An iPad Application to Guide Quality Discharge Teaching.

Quality discharge teaching prepares patients and families to transition safely from hospital to home. Technology can enhance and support quality discharge teaching by promoting patient family engagement during the transition. The purpose of this mixed methods study was to explore clinical nurses' experience with using Engaging Parents in Education for Discharge, an iPad application to guide quality discharge teaching. Twelve nurses at a large Midwestern Children's Hospital participated in small focus groups after use of the Engaging Parents in Education for Discharge application and completed a questionnaire on their perception of the acceptability and feasibility of the app. Findings revealed three themes: (1) development and deployment issues focused on the importance of training and support by the study team during implementation; (2) workflow integration centered on the importance of incorporating use of the app into current workflows and to preserve effective communication strategies with parents to optimize use in the healthcare setting; and (3) nurses perceived value in the use of the Engaging Parents in Education for Discharge app for beneficial scripting, questions on discharge topics often forgotten, and guidance for complex patients. Results of this study offer insight into key components for consideration when implementing and integrating technology to aid nursing practice.

Family resiliency and family functioning in Non-Hispanic Black and Non-Hispanic White families of preterm infants.

PURPOSE: The purpose of this study was to examine the relationship between resiliency factors and family functioning in families of preterm infants (< 37 weeks gestation) from two different racial groups hospitalized in a neonatal intensive care unit (NICU). DESIGN AND METHODS: A cross-sectional design was used at five Level III/IV NICUs in a Midwestern city/suburbs. Seventy-nine family units (24 Non-Hispanic Black and 55 Non-Hispanic White) completed four instruments that assessed families' use of specific resiliency factors and a measure of family functioning. Demographic data were also collected. RESULTS: Using linear mixed modeling, the significant predictors of family functioning for both Non-Hispanic Black and Non-Hispanic White, even after adjusting for education, income and race, were the protective factors "hardiness" (coefficient = -0.021) and "resources" (coefficient = -0.0052). The fixed effects in the model accounted for 48% (Marginal R2 = 0.48) of the variance on family functioning and the fixed and random effects accounted for 59% (Conditional R2, 0.59) of the variance on family functioning. Sixteen percent of the total sample rated their family as dysfunctional. CONCLUSIONS: Findings from this study suggest that assessment of protective factors related to hardiness and resources individualize nursing interventions to support the resiliency of both Non-Hispanic Black and Non-Hispanic White families, regardless of differences in income and education. Further research studying resiliency in families of preterm infants is needed to understand the impact on long-term family functioning. PRACTICE IMPLICATIONS: Understandingindividual family strengths,through the identification of resiliency (protective and recovery) factors could predict at-risk families before discharge. In collaboration with other health care professionals, nurses can assess individual family needs and strengths, within the context of their socioeconomic environment, and the racial and cultural influences that are important to the family.

Exploration of Aromatherapy in a Pediatric Outpatient Surgical Setting: A Pilot Study.

PURPOSE: To explore whether an aromatherapy product, QueaseEASE, could be used to supplement standard postoperative nursing care for children experiencing discomfort from postoperative nausea and vomiting (PONV) in a pediatric outpatient surgical setting. DESIGN: Evidence-based practice project resulting in a prospective, descriptive research design. METHODS: English-speaking pediatric outpatient surgical patients 8 to 17 years of age were evaluated for symptoms of discomfort during the postoperative phase of care, using the Baxter Animated Retching Faces (BARF) scale and offered the QueaseEASE aromatherapy product. A postoperative phone call was made the next business day to inquire about use of product at home. FINDINGS: Thirty-one patients rated their BARF scores as four or greater and were qualified to use the aromatherapy pod. Twenty-four patients (77.4%) demonstrated a positive response to the aromatherapy, as evidenced by a BARF score improvement of 2 or more points upon reassessment. Fourteen of the 27 patients (51.8%) contacted at home during the postoperative phone call stated continued use of the aromatherapy pod, and 100% of the families were satisfied with this adjunct therapy. CONCLUSIONS: Aromatherapy resulted in an improvement in self-reported nausea scores in a pediatric surgical outpatient population and was a family satisfier. Further research is recommended.

Descriptive Longitudinal Pilot Study: Behaviors Surrounding Feeding of Preterm Infants Who Received Extended Tube Feedings.

Purpose: Seventy percent of preterm infants experience challenges with oral feeding and commonly require tube feedings. Yet it is not well understood how these behaviors change over time while infants are receiving tube feedings only and through the transition to oral feedings. The purpose of this pilot study was to describe the change in behaviors surrounding feeding and with respect to advancing Post Menstrual Age (PMA) for preterm infants who received extended tube feedings during hospitalization in the Neonatal Intensive Care Unit (NICU). Methods and measures: A prospective pilot study was conducted in a NICU. We recruited thirty-five infants who were born between 28 to 32 weeks gestational age and expected to have at least two weeks of tube feedings. Infant health status and feeding progression were obtained from the medical record. Behaviors surrounding feeding included infant state, social interactive behaviors, orally directed behaviors, and hunger/satiation cues were evaluated via weekly recorded videos. Results: During the pre-feeding segment, we noted an increase over time for awake, facial gaze, gaze aversion, tongue protrusion, fussing, mouthing, vocalization, and interest in the pacifier. During the intra-feeding segment, we found an increase over time for fussing, and a decrease for eye widening, eye searching, and vocalization. Conclusion: To our knowledge, this was the first pilot study to comprehensively describe the changes in behaviors surrounding feeding over time and with respect to advancing PMA for preterm infants who received extended tube feedings during the NICU hospitalization. Infants demonstrated distinct behaviors surrounding feeding as young as 28 weeks post menstrual age. These behaviors may vary among infants and change significantly with advancing post-menstrual age. Assessment of subtle behaviors surrounding feeding is important to ensure oral feeding readiness.

One Size Does Not Fit All: Discharge Teaching and Child Challenging Behaviors.

This study compares quality of discharge teaching and care coordination for parents of children with challenging behaviors participating in a nursing implementation project, which used an interactive iPad application, to usual discharge care. Unlike parents in the larger quasi-experimental longitudinal project, parents of children with challenging behaviors receiving the discharge teaching application (n = 14) reported lower mean scores on the quality of discharge teaching scale-delivery subscale (M = 8.2, SD = 3.1) than parents receiving usual care (n = 11) (M = 9.6, SD = 4.7) and lower scores on the Care Transition Measure (M = 2.44, SD = 1.09) than parents receiving usual care (M = 3.02, SD = 0.37), with moderate to large effects (0.554-0.775). The discharge teaching approach was less effective with this subset, suggesting other approaches might be considered for this group of parents. Further study with a larger sample specific to parents of children with challenging behaviors is needed to assess their unique needs and to optimize their discharge experience.

Engagement of Families in the Care of Hospitalized Pediatric Patients: A Scoping Review.

This scoping review was conducted to examine the range, nature, and extent of the published family engagement literature specific to the pediatric acute care setting to highlight future research and practice development opportunities. Included studies (N = 247) revealed global relevance. Engagement strategies ranged from more passive such as allowing/encouraging families to be present at the bedside to more active strategies aimed at promoting mutual and reciprocal nurse-patient interactions. Family engagement is distinguished by a mutually beneficial partnership of families with health care team members and care organizations. Future research in the area of family engagement in pediatric nursing should focus on determining the core engaging health professional behaviors and engaged parent outcomes; extending the knowledge base related to mutually beneficial partnerships between families and health care teams; developing effectiveness studies to determine the optimal engaging actions by teams to achieve parent engagement; and measuring the influence of engagement on parent and infant/child outcomes.

Protocol for implementation of an evidence based parentally administered intervention for preterm infants.

BACKGROUND: Multi-sensory behavioral interventions for preterm infants have the potential to accelerate feeding, growth, and optimize developmental trajectories and increase parents' interactive engagement with their infants. However, few neonatal intensive care units (NICUs) provide evidence-based standardized early behavioral interventions as routine care. Lack of implementation is a major gap between research and clinical practice. H-HOPE, is a standardized behavioral intervention with an infant- directed component (Massage+) and a parent-directed component (four participatory guidance sessions that focus on preterm infants' behaviors and appropriate responses). H-HOPE has well documented efficacy. The purpose of this implementation study is to establish H-HOPE as the standard of care in 5 NICUs. METHODS: The study employs a Type 3 Hybrid design to simultaneously examine the implementation process and effectiveness in five NICUs. To stagger implementation across the clinical sites, we use an incomplete stepped wedge design. The five participating NICUs were purposively selected to represent different acuity levels, number of beds, locations and populations served. Our implementation strategy integrates our experience conducting H-HOPE and a well-established implementation model, the Consolidated Framework for Implementation Research (CFIR). The CFIR identifies influences (facilitators and barriers) that affect successful implementation within five domains: intervention characteristics, outer setting (the hospital and external events and stakeholders), inner setting (NICU), implementers' individual characteristics, and the implementation process. NICUs will use the CFIR process, which includes three phases: Planning and Engaging, Executing, and Reflecting and Evaluating. Because sustaining is a critical goal of implementation, we modify the CFIR implementation process by adding a final phase of Sustaining. DISCUSSION: This study builds on the CFIR, adding Sustaining H-HOPE to observe what happens when sites begin to maintain implementation without outside support, and extends its use to the NICU acute care setting. Our mixed methods analysis systematically identifies key facilitators and barriers of implementation success and effectiveness across the five domains of the CFIR. Long term benefits have not yet been studied but may include substantial health and developmental outcomes for infants, more optimal parent-child relationships, reduced stress and costs for families, and substantial indirect societal benefits including reduced health care and special education costs. TRIAL REGISTRATION: ClinicalTrials.gov registration number NCT04555590 , Registered on 8/19/2020.

COVID-19: Impact for Pediatric Research, Evidence-Based Practice and Quality Processes and Projects.

Pediatric hospitals have not experienced the increase in patient volumes or received the same media attention as adult hospitals. Yet, the impact has been equally and significantly palpable. The Department of Nursing Research and EBP continues to be available for consultation and mentoring of staff, as staff use current evidence to drive continued practice changes and consider new projects. Alternative processes for research methods will enable the continuation of important nursing research.

Engaging Parents in Education for Discharge (ePED): Evaluating the Reach, Adoption & Implementation of an Innovative Discharge Teaching Method.

PURPOSE: This paper describes the evaluation of the implementation of an innovative teaching method, the "Engaging Parents in Education for Discharge" (ePED) iPad application (app), at a pediatric hospital. DESIGN AND METHODS: The Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework was used to guide the evaluation. Three of the five RE-AIM elements are addressed in this study: Reach, Adoption, and Implementation. RESULTS: The Reach of the ePED was 245 of 1015 (24.2%) patient discharges. The Adoption rate was 211 of 245 (86%) patients discharged in the five months' study period. High levels of fidelity (89.3%) to Implementation of the ePED were attained: the Signs and Symptoms domain had the highest (93%) and Thinking Forward about Family Adjustment screen had the lowest fidelity (83.3%). Nurse themes explained implementation fidelity: "It takes longer", and "Forgot to do it." CONCLUSIONS: The ePED app operationalized how to have an engaging structured discharge conversation with parents. While the Reach of the ePED app was low under the study conditions, the adoption rate was positive. Nurses were able to integrate a theory-driven practice change into their daily routine when using the ePED app. IMPLICATIONS FOR PRACTICE: The rates of adoption and implementation fidelity support the feasibility of future hospital wide implementation to improve patient and family healthcare experience. Attention to training of new content and the interactive conversation approach will be needed to fully leverage the value of the ePED app. Future studies are needed to evaluate the maintenance of the ePED app.

Using the Engaging Parents in Education for Discharge (ePED) iPad Application to Improve Parent Discharge Experience.

PURPOSE: The purpose of this study was to evaluate the use of the Engaging Parents in Education for Discharge (ePED) iPad application on parent experiences of hospital discharge teaching and care coordination. Hypotheses were: parents exposed to discharge teaching using ePED will have 1) higher quality of discharge teaching and 2) better care coordination than parents exposed to usual discharge teaching. The secondary purpose examined group differences in the discharge teaching, care coordination, and 30-day readmissions for parents of children with and without a chronic condition. DESIGN/METHODS: Using a quasi-experimental design, ePED was implemented on one inpatient unit (n = 211) and comparison group (n = 184) from a separate unit at a pediatric academic medical center. Patient experience outcome measures collected on day of discharge included Quality of Discharge Teaching Scale-Delivery (QDTS-D) and care coordination measured by Care Transition Measure (CTM). Thirty-day readmission was abstracted from records. RESULTS: Parents taught using ePED reported higher QDTS-D scores than parents without ePED (p = .002). No differences in CTM were found between groups. Correlations between QDTS-D and CTM were small for ePED (r = 0.14, p 0.03) and non-ePED (r = 0.29, p < .001) parent groups. CTM was weakly associated with 30-day readmissions in the ePED group. CONCLUSION: The use of ePED by the discharging nurse enhances parent-reported quality of discharge teaching. PRACTICE IMPLICATIONS: The ePED app is a theory-based structured conversation guide to engage parents in discharge preparation. Nursing implementation of ePED contributes to optimizing the patient/family healthcare experience.

Development of a Self-Management Theory-Guided Discharge Intervention for Parents of Hospitalized Children.

BACKGROUND: Parents of hospitalized children, especially parents of children with complex and chronic health conditions, report not being adequately prepared for self-management of their child's care at home after discharge. PROBLEM: No theory-based discharge intervention exists to guide pediatric nurses' preparation of parents for discharge. PURPOSE: To develop a theory-based conversation guide to optimize nurses' preparation of parents for discharge and self-management of their child at home following hospitalization. METHODS: Two frameworks and one method influenced the development of the intervention: the Individual and Family Self-Management Theory, Tanner's Model of Clinical Judgment, and the Teach-Back method. A team of nurse scientists, nursing leaders, nurse administrators, and clinical nurses developed and field tested the electronic version of a nine-domain conversation guide for use in acute care pediatric hospitals. CONCLUSIONS: The theory-based intervention operationalized self-management concepts, added components of nursing clinical judgment, and integrated the Teach-Back method. CLINICAL RELEVANCE: Development of a theory-based intervention, the translation of theoretical knowledge to clinical innovation, is an important step toward testing the effectiveness of the theory in guiding clinical practice. Clinical nurses will establish the practice relevance through future use and refinement of the intervention.

Discharge Teaching, Readiness for Discharge, and Post-discharge Outcomes in Parents of Hospitalized Children.

PURPOSE: This study explored the sequential relationships of parent perceptions of the quality of their discharge teaching and nurse and parent perceptions of discharge readiness to post-discharge outcomes (parental post-discharge coping difficulty, readmission and emergency department visits). DESIGN/METHODS: In this secondary analysis of data from a longitudinal pilot study of family self-management discharge preparation, the correlational design used regression modeling with data from a convenience sample of 194 parents from two clinical units at a Midwest pediatric hospital. Data were collected on the day of discharge (Quality of Discharge Teaching Scale; Readiness for Hospital Discharge Scale), at 3weeks post-discharge (Post-Discharge Coping Difficulty Scale), and from electronic records (readmission, ED visits). RESULTS: Parent-reported quality of discharge teaching delivery (the way nurses teach), but not the amount of content, was positively associated with parent perception (B=0.54) and nurse assessment (B=0.16) of discharge readiness. Parent-reported discharge readiness was negatively associated with post-discharge coping difficulty (B=-0.52). Nurse assessment of discharge readiness was negatively associated with readmission; a one point increase in readiness (on a 10 point scale) decreased the likelihood of readmission by 52%. CONCLUSION: There is a sequential effect of quality of discharge teaching delivery on parent discharge readiness, which is associated with parent coping difficulty and child readmission. PRACTICE IMPLICATIONS: Efforts to improve discharge outcomes should include strategies to build nurse teaching skills for high-quality delivery of discharge teaching. In addition, routine nurse assessment of discharge readiness can be used to identify children at risk for readmission and trigger anticipatory interventions.

Integrating the synergy model for patient care at children's hospital of Wisconsin.

The Synergy Model for Patient Care is a framework for professional nursing practice that emphasizes the unique relationship between patients and clinicians, which can result in optimal outcomes for both. Integrating this model into contemporary nursing practice at a freestanding children's hospital was accomplished by "backing into the model" and developing the "tools" that encompassed both the patient characteristics and the clinician competencies. In addition to creative educational activities for the staff, leadership support and communication strategies were paramount to effective implementation.

Nurse researchers in children's hospitals.

Little is known about the role of nurse researchers (NRs) and the structure of nursing research programs in children's hospitals in the United States. This descriptive study obtained survey data from 33 NRs. Data suggest that the NR role is emerging and has both commonalities and unique components when compared with the previous studies of NRs in adult hospitals. Most participants have been in their position for less than 4 years. Conducting research, having staff development related to research, and facilitating evidence-based practice or research were common responsibilities. The structure of nursing research programs impacts both the NRs and the program outcomes.