Perceptions of Interprofessional Practitioners Regarding Pediatric Palliative Transports.

BACKGROUND: Pediatric palliative transport (PPT) is the practice of offering critically and terminally ill children requiring life-sustaining measures the opportunity to be discharged from the hospital to home or a hospice facility for end-of-life care. Although studies have shown PPT to favorably affect both children and their families, limited research exists on the perspectives of health care practitioners. OBJECTIVES: To understand the experience of interprofessional practitioners who have cared for a critically or terminally ill child during a PPT and their perception of PPT as a care option. METHODS: This study is a qualitative descriptive inquiry conducted using 8 focus groups. Participants included interprofessional staff from 4 specialty intensive care units, the pediatric advanced care team, and the critical care transport team at a quaternary, freestanding children's hospital. Content analysis was used to summarize themes and recommendations. RESULTS: Five overarching themes were identified: PPT as a care pathway, education, communication, support, and closure. Use of PPT was perceived as aligned with the hospital's mission of family-centered care and as providing a way for the health care team to support a family's choice. Participants recommended further development of information to guide communication and processes of care that would enhance the experience for families and staff and support PPT as a care pathway. CONCLUSIONS: Pediatric palliative transport is considered a feasible, valuable, and critical end-of-life intervention. The value that PPT has brought to participating families warrants continued investment in the intervention's standardization and enhancement.

Parent Perception of Their Role in the Pediatric Cardiac Intensive Care Unit.

BACKGROUND/INTRODUCTION: One way the goal of establishing a partnership with families is accomplished, specific to the pediatric intensive care units, is 24-hour visitation and presence/participation during medical rounds and procedures. Despite the breadth of literature on the positive effect of parent presence, as well as the nearly nationwide adoption of 24-hour pediatric intensive care unit visitation, there is little to no research about how these changes have affected parents' perception of their role in the pediatric cardiac intensive care unit (PCICU). OBJECTIVES/AIMS: The purpose of this study was to explore and better understand the experience of parents in the PCICU within a patient/family-centered care model. METHODS: Using a qualitative descriptive approach, interviews were conducted with parents of children currently admitted as inpatients in the PCICU. Participants were asked broad, open-ended questions and probes to attain qualitative descriptions of their experiences and perceptions of their parental role in the PCICU. The research design for this study was based on naturalistic inquiry and was used to describe rather than interpret parental experiences in their own words. RESULTS: Eleven parents from 7 families were interviewed; parents described their role in terms of 2 main categories, as one who is an advocate and decision maker and one who provides emotional and physical support. Parents valued the expertise of the PCICU team but also shared the significance of the team recognizing their role as parents. Incorporating parents as an integral member of the health care team is a fundamental component to PCICU care. DISCUSSION/CONCLUSION: The role of parents is irreplaceable, particularly in the PCICU. The medical complexity of the intensive care can be a barrier to act as parents resulting in a disruption of family-centered care. Nursing staff avert this disruption through modeling parenting to their child's present circumstances and involvement in normal parenting tasks.

Utilizing high-fidelity simulation to improve newly licensed pediatric intensive care unit nurses' experiences with end-of-life care.

PURPOSE: New pediatric intensive care unit (PICU) nurses face distinct challenges in transitioning from the protected world of academia to postlicensure clinical practice; one of their greatest challenges is how to support children and their caregivers at the end-of-life (EOL). The purpose of this quality improvement project was to create, implement, and assess the efficacy of a high-fidelity EOL simulation, utilizing the "Debriefing with Good Judgment" debriefing model. DESIGN AND METHODS: Participants were nurses with 4 years or less of PICU experience from a 404-bed quaternary care, free-standing children's hospital in the northeastern United States. Data were collected with the Simulation Effectiveness Tool-Modified (SET-M) and the PICU EOL Simulation Evaluation Survey. RESULTS: Twenty-four nurses participated; the majority (54%) were 25-29 years of age. The SET-M results indicate that the EOL simulation was beneficial to their learning and increased nurse confidence in delivering EOL care. Responding to the EOL Simulation Survey, participants rated high levels of confidence with tasks such as utilizing unit and hospital-based supports, self-care, ability to listen and support families, and medicating their patients at the EOL. PRACTICE IMPLICATIONS: This high-fidelity EOL simulation is a robust teaching tool that serves to support the unmet needs of the PICU nurses who care for dying children. Nurse participants had a unique opportunity to practice procedural and communication skills without risk for patient or family harm. Findings from this project can serve to guide curriculum changes at the undergraduate level as well as provide direction for new nurse orientation classes.

Evaluation of an evidence-based practice mentorship programme in a paediatric quaternary care setting.

BACKGROUND: Evidence-based practice (EBP) is essential for clinical decision-making, improving care, reducing costs and achieving optimal patient outcomes. The Evidence-based Practice Mentorship Program (EBPMP) is a flexible, self-directed programme whereby participants carry out EBP projects guided by expert mentors. AIMS: To evaluate EBPMP effectiveness and participant experience. METHODS: To evaluate effectiveness, as measured by changes in EBP value, knowledge and implementation, participants completed pre- and post-EBPMP Quick-EBP-Value, Implementation and Knowledge (VIK) surveys. To understand participants' experiences individual and group interviews were conducted at the end of the programme and analysed using qualitative content analysis. RESULTS: Most participants were over 50 years old, Caucasian, inpatient staff nurses, baccalaureate prepared, with over 11 years' experience. Statistically significant improvements were observed in the post Quick-EBP-VIK knowledge and implementation domains. Individual and group participant interviews revealed four categories of importance to the experience: 1. perceived benefits of EBP, 2. time as a barrier to EBP, 3. desire for more cohort interaction and 4. positive mentee-mentor experience. CONCLUSIONS: EBPMP can improve participants' knowledge and implementation of EBP in an environment that values EBP; however, opportunities exist to implement programme modifications that address barriers identified by participants including project time and increased participant interactions.

Nursing science fellowship at Boston Children's Hospital.

INTRODUCTION: Clinical inquiry is vital to safeguard nursing practice and ensure optimal outcomes for our patients and families. The innovative Nursing Science Fellowship (NSF) was developed to provide structured mentorship for pediatric nurses by nurse scientists to design and conduct clinical inquiry generated from their practice. METHODS: Each fellow is paired with a nurse scientist mentor to receive support for timely project completion. Dedicated mentors guide the immersion of fellows in nursing science by providing them with didactic content detailing the process of clinical inquiry and bi-monthly one-on-one mentorship sessions. Throughout their journey, fellows learn the appropriate method by which to address their clinical inquiry question and complete a scholarly project that contributes to the science of nursing. On a quarterly basis, fellows share their progress and achievements with peers, mentors, and senior leadership. RESULTS: Since 2011, 84 fellows have enrolled in this two-year program. Sixty-two nurses have graduated from the NSF and 22 fellows are currently active. Collectively, the fellows have received 46 grants to support their projects. Twenty-one fellows have received promotions and 22 fellows have furthered their education in a masters, clinical or research doctorate program. There have been 78 external disseminations highlighting their clinical inquiry work, including poster and podium presentations and peer-reviewed published manuscripts. Lastly, there have been 26 new or updated clinical practices implemented across the enterprise as a result of completed projects. CONCLUSIONS: Combined these efforts have ensured a sustained commitment to advancing the science and practice of pediatric nursing.

Pediatric nurses' perceptions of preparedness for global health fieldwork.

OBJECTIVES: The purpose of this qualitative descriptive research study was to understand the current state, perceived content, and experiential needs of pediatric nurses preparing for global health (GH) fieldwork experience. This study aimed to inform stakeholders about the standard and unique preparation needs of pediatric GH nurses. STUDY DESIGN AND METHODS: One group and five individual interviews were held with nurses from a large pediatric quaternary care facility in the Northeast United States. Data from the interviews were transcribed verbatim, eliminating personal data. Only deidentified transcripts were used for data analysis. Members of the study team used content analysis to systematically code and analyze the data. RESULTS: Qualitative content analysis revealed five categories: (1) identifying clear objectives, (2) understanding the practice environment, (3) self-assessment of clinical skills, cultural competencies, and adaptability, (4) safety and logistics planning, and (5) psychological self-care and reentry anticipatory guidance. CONCLUSIONS: Findings can provide a basis for program planning to prepare pediatric nurses for GH fieldwork. Program planning must account for the unique features of the site and situation. Organizational and personal preparation can influence the perceived success of the GH experience.

Moral Distress: Defined and Described by Neonatal and Pediatric Critical Care Nurses in a Quaternary Care Free-Standing Pediatric Hospital.

BACKGROUND/INTRODUCTION: Despite a growing population of chronically and acute critically ill neonatal and pediatric patients, there were few published articles related to moral distress as experienced by nurses caring for these patients. OBJECTIVES/AIMS: The aim of this study was to define moral distress based on the perceptions and experiences of neonatal and pediatric critical care nurses. METHODS: A qualitative descriptive study using focus group methodology was undertaken. All nurses with 2 or more years of experience from the 4 neonatal and pediatric intensive care units in a large 404-bed urban pediatric hospital located in the northeast were invited to attend 1 of 15 audio-recorded focus groups lasting 60 to 90 minutes. Once data were transcribed, conventional content analysis was used to develop the definition and categories of moral distress. RESULTS: Nurse participants defined moral distress as "patient care situations where there is a mismatch or incongruity between expected behaviors of the nurse and his/her personal values/beliefs in the neonatal/pediatric critical care setting." The 2 overarching categories that emerged from the data were patient-focused factors and nurse-focused factors. DISCUSSION/CONCLUSIONS: Understanding how neonatal and pediatric critical care nurses define moral distress and what contributes to its development is foundational to developing targeted strategies for nursing support and education, with the goal of creating a culture of moral resiliency.

Mother's Lived Experience During Repair of Long-Gap Esophageal Atresia: A Phenomenological Inquiry.

BACKGROUND: Infants born with long-gap esophageal atresia (LGEA) pose unique physiologic risks in the newborn period. Anatomic and physiologic anomalies require an extended hospitalization with procedural analgesia and sedation that impact the mother's experience of birth, maternal response, and nurturing of her infant. PURPOSE: The aim of this study was to understand the meaning of experiences that mothers of infants born with LGEA encounter in the neonatal intensive care unit while their infant undergoes esophageal repair. METHODS: A hermeneutical phenomenological design was used to guide this inquiry. Three mothers were interviewed on 3 separate occasions. The conversations were audio-recorded and transcribed verbatim. The findings were analyzed using fundamental existential lifeworld themes. RESULTS: The essence that conceptualized the study was "making connections: day-by-day." Themes that emerged are (a) the many phases; (b) the long and winding road; (c) a new me, my purpose; and (d) our new community. IMPLICATIONS FOR PRACTICE: Nurses' knowledge and understanding of maternal experiences of having an infant with LGEA will enable for increased physical closeness, optimizing time spent together to learn their infant's unique personality. Creating partnerships with mothers can enhance our understanding of their perspectives, concerns, needs, and guide interventions. IMPLICATIONS FOR RESEARCH: Further exploration of family dynamics including fathers, siblings, and contextual factors may illuminate interventions to enhance relationships and communication that may influence developmental outcomes for families of infants with LGEA.

Translating Research to Practice: Providing Critically Ill Children the Opportunity to Go Home or to Hospice for End-of-Life Care.

BACKGROUND: A freestanding quaternary pediatric hospital in New England has been facilitating parents' requests to take their child home or to a hospice facility from an Intensive Care Unit at end of life for the withdrawal of life sustaining measures for the past 16 years. However, knowledge of the aftermath of this decision was very limited. Before responding to a growing interest in making this service more available, an exploratory study was done to learn about the parents' perceptions of the experience over time. We learned that the parents were very positive and highly recommending that pediatric palliative transports be made more available. OBJECTIVE: The aim of this study was to describe the steps and rationale used to create a structured platform for pediatric palliative transports, drawing on findings from a previous study. OUTCOMES: To standardize the process, describe distinct responsibilities, and ensure quality and safety, an algorithm was created. The development of a checklist followed to enable the coordinator to follow the status of preparation for the transport. Empowered by parents' requests and positive reflections, these transports are now offered more frequently to parents of children requiring care in an intensive care unit at end of life.

Creating Opportunities for Optimal Nutritional Experiences for Infants With Complex Congenital Heart Disease.

INTRODUCTION: To our knowledge, successful breastfeeding in the population with single ventricle congenital heart disease has not been reported in the literature, particularly during the interstage period. METHOD: A retrospective case study including inpatient nutrition and a complete history of daily logs with the home surveillance monitoring program was performed. RESULTS: Successful full breastfeeding (exceeding prescribed weight growth goals) after Stage I surgery was achieved during the interstage period. The infant was discharged at 3.41 kg, not consistently breastfeeding, and progressed to 7.05 kg at 5 months of age, fully breastfeeding. CONCLUSION: Supporting breastfeeding for infants who have undergone repairs for single ventricle anatomy can be challenging but can be accomplished. It requires a concerted team effort, clear communication, and collaboration among caregivers, the mother, and her supporters.

Measurement of Quality of Nursing Practice in Congenital Cardiac Care.

BACKGROUND: The impact of nursing care on patients' outcomes has been demonstrated in adult and pediatric settings. However, limited attention has been given to standardized measurement of pediatric nursing care. A collaborative group, the Consortium for Congenital Cardiac Care Measurement of Nursing Practice, was formed to address this gap. The purpose of this study was to assess the current state of measurement of the quality of pediatric cardiovascular nursing in freestanding children's hospitals across the United States. METHODS: A qualitative descriptive design was used to assess the state of measurement of nursing care from the perspective of experts in pediatric cardiovascular nursing. Nurse leaders from 20 sites participated in audiotaped phone interviews. The data were analyzed by using conventional content analysis. RESULTS: Each level of data coding was increasingly comprehensive. Guided by Donabedian's quality framework of structure, process, and outcome, 2 encompassing patterns emerged: (1) structure and process of health care delivery and (2) structure and process of evaluation of care. Similarities in the structure of health care delivery included program expansion and subsequent hiring of nurses with a bachelor of science in nursing and experienced nurses to provide safety and optimal outcomes for patients. Programs varied in how they evaluated care in terms of structure, measurement, collection and dissemination of data. CONCLUSION: External factors and response to internal processes of health care delivery were similar in different programs; evaluation was more varied. Seven opportunities for measurement that address both structure and process of nursing care were identified to be developed as benchmarks.

Parents' Experiences of Pediatric Palliative Transports: A Qualitative Case Series.

CONTEXT: Pediatric palliative transports, the practice of transporting critically ill children home for end-of-life care including extubation, are an option for children requiring high levels of medical support at end of life. Little is known about the experience from the perspective of the children and families. OBJECTIVES: To understand parents' perspectives on the experience of pediatric palliative transports. METHODS: Open-ended interviews were conducted using a qualitative descriptive design. Each parent was asked to reflect on the process of bringing their child home to die. Conventional content analysis was used for data analysis. RESULTS: Nine parents participated. The decision to transport the child home was a process motivated by promises to the child or a conviction that it was the right thing to do. The parents were gratified by the attention to safety and detail involved, but the actual transport home was stressful to them. The arrival home was typically recounted as a celebration. Being home provided time with the child in the context of their family and contributed to their lives. Memories of the experience brought comfort and a sense of fulfillment. CONCLUSION: Each parent found the experience positive and meaningful. The child's experiences when alive, not events at the time of death, were remembered. All parents recommended palliative transports, emphasizing the importance of home and family, when desired. These interviews strongly suggest that palliative transports make a positive, important contribution to the care of at least some children facing end of life, and their families.

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Management of peripherally inserted central catheters (PICC) in pediatric heart failure patients receiving continuous inotropic support.

The study aim was to evaluate present practice of maintaining PICC line patency in pediatric heart failure patients receiving continuous inotropes by comparing one cohort receiving low dose continuous heparin with one receiving no heparin. A case control retrospective chart review compared the two cohorts on duration of patency (measured in days) and need for thrombolytic agents. Median duration of patency for the heparin group was 24 days versus 16 days for the no heparin group (p=0.07). Use of thrombolytic agents was 28% in the heparin group compared to 50% in the no heparin group (p=0.08). Although not statistically significant, findings were clinically significant and supportive of current practice.