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.

Variation in immunosuppression practices among pediatric liver transplant centers-Society of Pediatric Liver Transplantation survey results.

BACKGROUND: Variation in IS exists among pediatric liver transplant centers. While individual centers may publish their practice paradigms, current data on practices as a whole are lacking. This study sought to ascertain the IS protocols of pediatric liver transplant centers within the SPLIT to better understand variability and similarities among peer institutions. METHODS: A 27-item questionnaire was developed within the SPLIT Quality Improvement and Clinical Care Committee. The survey collected data regarding center demographics, IS practices, and treatment of acute cellular rejection. RESULTS: Twenty-eight (64%) SPLIT centers responded with 22 (79%) centers performing more than 10 transplants per year and 17 (61%) following more than 100 post-transplant recipients. All centers use a written protocol, and 25 (89%) have a dedicated transplant pharmacist/PharmD. Twenty-five (89%) centers use steroids for induction alone or in combination with thymoglobulin/interleukin-2 antibodies. All centers use tacrolimus for initial maintenance therapy. Most centers have specialized protocols for ABO-incompatible transplants, recipients with renal dysfunction, autoimmune liver diseases, and liver tumors. Treatment of rejection varied but was associated with escalation in IS. CONCLUSION: IS practices among pediatric liver transplant centers are similar including the use of written protocols, pharmacy involvement, steroids for induction, tacrolimus as initial IS, tacrolimus reduction/delay for renal dysfunction, and escalation of IS with rejection severity. However, other IS practices show wide variability including treatment for ABO-incompatible grafts and presumed rejection. This study serves as a foundation to guide prospective research linking IS practice to outcomes to determine best practice.

Pilot study protocol of a mHealth self-management intervention for family members of pediatric transplant recipients.

Solid-organ transplantation is the treatment of choice for end-stage organ failure. Parents of pediatric transplant recipients who reported a lack of readiness for discharge had more difficulty coping and managing their child's medically complex care at home. In this paper, we describe the protocol for the pilot study of a mHealth intervention (myFAMI). The myFAMI intervention is based on the Individual and Family Self-Management Theory and focuses on family self-management of pediatric transplant recipients at home. The purpose of the pilot study is to test the feasibility of the myFAMI intervention with family members of pediatric transplant recipients and to test the preliminary efficacy on postdischarge coping through a randomized controlled trial. The sample will include 40 family units, 20 in each arm of the study, from three pediatric transplant centers in the United States. Results from this study may advance nursing science by providing insight for the use of mHealth to facilitate patient/family-nurse communication and family self-management behaviors for family members of pediatric transplant recipients.

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.

A clinical description of children with solid organ transplants who present with feeding disorder.

Pediatric solid organ transplant recipients have long-standing malnutrition concerns related to their pretransplant medical status. The targeted nutrition therapy utilized pre-, peri-, and post-transplantation may have the adverse effect of impeding normally developing feeding skills, particularly in very young children. Little is known about the relationship between transplantation and feeding disorders of childhood. The purpose of this study was to describe severity of feeding disorder and parental stress in patients with transplant compared to children followed in a specialty feeding clinic and the general community. Sixty-four children, comprised of 32 children with solid organ transplant ages 2 months to 12 years and 32 matched control patients diagnosed with a feeding disorder without history of solid organ transplant, were reviewed. All children were from the Feeding, Swallowing, and Nutrition Clinic at a single children's hospital. Findings indicate that patients who received a transplant and presented with a feeding problem had worse symptoms of feeding disorder than are typically found in the general community. These feeding problems disrupt mealtime behavior, caregiver and child relationship within a mealtime context, and may result in maladaptive feeding strategies used by families. When transplanted children present with feeding disorders, they are severe and have multiple effects on both the child and the feeding dynamic between the child and the child's caregivers. Further investigation may help us to better understand the relationship between transplantation and symptoms of feeding disorder.

Perioperative anticoagulation practices for pediatric liver transplantation.

Despite continued advancements in perioperative care for pediatric liver transplant (LT), graft-threatening vascular occlusion events including hepatic artery thrombosis (HAT) and portal vein thrombosis (PVT) remain a source of significant morbidity and mortality. Perioperative anticoagulation is commonly used for the prevention of HAT and PVT, but evidence-based guidelines are lacking. The goals of this survey were to determine the frequency of use of an anticoagulation protocol and to describe variation in anticoagulation practices among pediatric LT centers. The study consisted of an online survey distributed to members of SPLIT. The survey focused on institutional anticoagulation practices employed to reduce the incidence of graft and life-threatening vascular occlusion events. Responses were received from 31 of 39 SPLIT centers. All respondents report using anticoagulation after pediatric LT, and approximately 90% have institutional anticoagulation protocols. Subgroup analysis of high volume pediatric LT centers revealed similar variability in anticoagulation patterns. All participating SPLIT centers reported the use of post-transplant anticoagulation and nearly all use a protocol. However, there is marked variability in the type and dose of anticoagulation as well as the timing of initiation and duration of therapy across centers.

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.

Pediatric Nurses' Perspectives on Medication Teaching in a Children's Hospital.

PURPOSE: To explore inpatient pediatric nurses' current experiences and perspectives on medication teaching. DESIGN AND METHODS: A descriptive qualitative study was conducted at a Midwest pediatric hospital. Using convenience sampling, 26 nurses participated in six focus groups. Data were analyzed in an iterative group coding process. RESULTS: Three themes emerged. 1) Medication teaching is an opportunity. 2) Medication teaching is challenging. Nurses experienced structural and process challenges to deliver medication teaching. Structural challenges included the physical hospital environment, electronic health record, and institutional discharge workflow while process challenges included knowledge, relationships and interactions with caregivers, and available resources. 3) Medication teaching is amenable to improvement. CONCLUSION: Effective medication teaching with caregivers is critical to ensure safe, quality care for children after discharge. Nursing teaching practices have not changed, despite advances in technology and major changes in hospital care. Nurses face many challenges to conduct effective medication teaching. Improving current teaching practices is imperative in order to provide the best and safest care. PRACTICE IMPLICATIONS: This study generated knowledge regarding pediatric nurses' teaching practices, values and beliefs that influence teaching, barriers, and ideas for how to improve medication teaching. Results will guide the development of targeted interventions to promote successful medication teaching practices.

Role of Nutrition and Feeding for the Chronically Ill Pediatric Liver Patient Awaiting Liver Transplant.

This article reviews the essential role of nutrition in optimizing care for pediatric patients with liver disease awaiting liver transplant. A review of growth and overall principles of feeding for pediatric patients, from infancy through childhood and into adolescence, is provided including the role of macro- and micronutrients, nutrient distribution, and nutrition supplementation. The importance of a thorough nutrition assessment is reviewed, including focus areas the nurse can address with patients and families such as diet histories, growth, and dietary modifications. Suggestions for monitoring and implementing nutrition strategies are provided.

Pediatric solid organ transplant recipients: transition to home and chronic illness care.

Pediatric SOT recipients are medically fragile and present with complex care issues requiring high-level management at home. Parents of hospitalized children have reported inadequate preparation for discharge, resulting in problems transitioning from hospital to home and independently self-managing their child's complex care needs. The aim of this study was to investigate factors associated with the transition from hospital to home and chronic illness care for parents of heart, kidney, liver, lung, or multivisceral recipients. Fifty-one parents from five pediatric transplant centers completed questionnaires on the day of hospital discharge and telephone interviews at three wk, three months, and six months following discharge from the hospital. Care coordination (p = 0.02) and quality of discharge teaching (p < 0.01) was significantly associated with parent readiness for discharge. Readiness for hospital discharge was subsequently significantly associated with post-discharge coping difficulty (p = 0.02) at three wk, adherence with medication administration (p = 0.03) at three months, and post-discharge coping difficulty (p = 0.04) and family management (p = 0.02) at six months post-discharge. The results underscore the important aspect of education and care coordination in preparing patients and families to successfully self-manage after hospital discharge. Assessing parental readiness for hospital discharge is another critical component for identifying risk of difficulties in managing post-discharge care.

Vulnerability and chronic illness management in pediatric kidney and liver transplant recipients.

CONTEXT: Solid-organ transplant is the treatment of choice for end-stage organ failure and requires a transition from management of a life-threatening condition to a chronic illness. Despite research focusing on quality of life after transplant, there is a gap addressing the role of managing a chronic illness focusing on vulnerability and impact on family. OBJECTIVE: Identify patient and family patterns of adaptation among kidney and liver transplant recipients in regard to (1) vulnerability, (2) impact of illness on the family, (3) family functioning, and (4) quality of life (parent and child report). DESIGN: Cross-sectional study enrolling children 5 to 18 years old and their parent at a single time point after kidney or liver transplant. Validated self-report tools were completed. RESULTS: In all, 47 participants (24 kidney and 23 liver) were recruited. Mean age at transplant was 4.0 (kidney) and 2.1 (liver) years. Mean age at report was 12.1 (kidney) and 7.1 (liver) years. Child vulnerability correlated negatively with (1) family impact in the kidney (P < .05) and liver (P < .05) transplant groups, (2) PedsQL subscales including Parent Emotional (P< .05), Parent Social (P< .01), Parent Psychosocial (P < .01), Parent Physical (P < .05), Parent School (P < .05), and Child Social (P < .01) in the kidney transplant group, (3) PedsQL Parent Emotional subscale (P< .01) in the liver transplant group, and (4) Functional status (P < .01) in the liver transplant group. CONCLUSIONS: Child vulnerability provides insight into quality of life and the impact of illness on the family and family functioning.

Transition from hospital to home following pediatric solid organ transplant: qualitative findings of parent experience.

Transplant providers are challenged to determine appropriate interventions for patients and families due to limited published research regarding the context of the post-discharge experience from the perspective of parents of transplanted children. The purpose of this study is to describe the parent perspective of the transition from hospital to home following their child's solid organ transplant. Within a mixed-methods design, 37 parents of pediatric heart, kidney, and liver transplant recipients from three pediatric hospitals responded to qualitative interview questions on the day of hospital discharge and three wk following hospital discharge. Insight to the discharge preparation process revealed necessary education components. Post-discharge themes were identified for coping, knowledge, and adherence. The parents' responses provide awareness as to specific stressors and concerns parents are faced with when their child is discharged from the hospital after solid organ transplant and opportunities for ways the transplant team can provide support.

The SPLIT research agenda 2013.

This review focuses on active clinical research in pediatric liver transplantation with special emphasis on areas that could benefit from studies utilizing the SPLIT infrastructure and data repository. Ideas were solicited by members of the SPLIT Research Committee and sections were drafted by members of the committee with expertise in those given areas. This review is intended to highlight priorities for clinical research that could successfully be conducted through the SPLIT collaborative and would have significant impact in pediatric liver transplantation.

Nurses' Experiences and Perspectives of the Telehealth Working Environment and Educational Needs.

BACKGROUND: The continuing evolution of health care and the nursing profession includes the exponential growth of telehealth platforms. The goal of this study was to describe nurses' experiences with and perspectives on their practice with and future need for telehealth. METHOD: A cross-sectional descriptive mixed methods study was conducted with nursing graduates from a single university. Completed survey questions focused on demographics, current work status, plans for employment participation, and telehealth experience. Descriptive analysis was conducted with statistical software, with directed content analysis for narrative responses. RESULTS: A total of 305 of 5,080 participants completed the survey (6% response rate). Nurses described perceived benefits and barriers to working in a telehealth environment. Nurses identified continuing education needs that could form the basis for a telehealth continuing education program to increase confidence in telehealth delivery. CONCLUSION: The identified telehealth educational needs will positively influence the formation of continuing education opportunities for practicing nurses. [J Contin Educ Nurs. 2023;54(11):501-508.].

Feasibility and Acceptability of a mHealth Self-Management Intervention for Pediatric Transplant Families.

Families of pediatric solid organ transplant recipients need ongoing education and support in the first 30 days following hospital discharge for the transplantation. The purpose of this report is to describe the feasibility, acceptability, and preliminary efficacy of a mHealth family-self management intervention, (myFAMI), designed to improve post-discharge outcomes of coping, family quality of life, self-efficacy, family self-management, and utilization of health care resources. We enrolled 46 primary family members. myFAMI was feasible and acceptable; 81% (n=17/21) of family members completed the app at least 24/30 days (goal 80% completion rate). Family members generated 134 trigger alerts and received a nurse response within the goal timeframe of < 2 h 99% of the time. Although there were no significant differences between groups, primary outcomes were in the expected direction. The intervention was well received and is feasible for future post-discharge interventions for families of children who receive an organ transplant.

How ready are they? Parents of pediatric solid organ transplant recipients and the transition from hospital to home following transplant.

Poor discharge transition is evidence of a gap between evidence-based practices and current health care delivery. Pediatric SOT recipients are a vulnerable population at risk of complications during the discharge transition. The aim of this study was to investigate factors associated with the transition care from hospital to home. We studied the transition experience of parents of heart, liver, or kidney recipients to identify opportunities for improvement in discharge and post-discharge care processes and outcomes. Thirty-seven parents from three different pediatric transplant centers completed questionnaires on the day of hospital discharge and three wk following hospital discharge. Care coordination was associated with readiness for hospital discharge. Readiness for hospital discharge was subsequently associated with post-discharge coping difficulty, adherence difficulty with medical follow-up, and family impact. Identifying parents who are not ready to go home provides an opportunity to offer additional support services so parents can effectively manage their child's recovery and continuing care at home.

Working together as a team: adolescent transplant recipients and nurse practitioners.

Nurse practitioners are a critical part of the transplant team, enhancing the quality of patient care with their knowledge and skill with respect to disease-specific populations of patients. Adolescent transplant recipients are a vulnerable population and require specific considerations. Nurse practitioners can successfully tailor care to the adolescent developmental stages in order to promote quality of life, adherence to the medical regimen, and successful transition to adult transplant centers and to minimize risk-taking behaviors. Teamwork between the patient's family and the entire transplant team is important to optimize not only the patient's health but also to ensure quality of life after transplant. Adolescents can be especially challenging after transplant, given their complex and evolving psychosocial and cognitive development. Nurse practitioners are in a unique position to be central in adolescents' successful adaptation to their medical condition. Facilitating identification and management of medication-related side effects, awareness of emotional health and quality of life, adherence to the medical regimen, and eventual transition to adult caregivers all remain critically important steps in care that are ideally suited for advance practice leadership.

A Descriptive Study of Transplant Coordinator Job Satisfaction.

INTRODUCTION: Substantial growth in the field of transplantation in recent years has increased the need for transplant coordinators. The growing need for these highly skilled clinicians warrants a review of characteristics that increase job satisfaction, an important consideration for transplant centers. RESEARCH QUESTION: The study described transplant coordinators' perceptions of job satisfaction in their current positions. DESIGN: This study evaluated transplant coordinator job satisfaction conducted on 3 separate occasions at US geographically diverse sites. Two instruments, the Vermont Nurses: Job Analysis and Retention Survey and an investigator-designed role and demographic survey, were used to capture study participants' attitudes regarding elements of job satisfaction, design, and involvement. RESULTS: Demographic characteristics of study participants (N = 133) reveal a largely female population (n = 113, 85%) employed full time (n = 124, 93%) in a hospital setting (n = 106, 80%). Scores for items related to job satisfaction, design, and involvement were generally positive. Participants reported being less satisfied for characteristics including promotion opportunities, fringe benefits, and attention to career development provided by employers. CONCLUSION: As annual rates of transplants continue to increase across the United States, the need for growing and retaining talented staff in transplant care settings is even more critical. Results of the study suggest that while transplant coordinators remain largely satisfied with the challenges and personal fulfillment associated with their positions, opportunities for professional development may improve retention and recruitment. Specifically, supporting career development and providing formalized evaluation and supervision were identified as areas of improvement within this specialized group of clinicians.

Parent Readiness for Hospital Discharge Scale: Psychometrics and Association With Postdischarge Outcomes.

INTRODUCTION: The purpose of this study is to validate the Readiness for Hospital Discharge Scale (RHDS) for use with parents of hospitalized children. PedRHDS is a structured tool for a discharge readiness assessment before pediatric discharge. METHODS: Using combined data from four studies with 417 parents, psychometric testing and item reduction proceeded with principal component analysis for factor structure delineation, Cronbach's alpha for reliability estimation, and regression analysis for predictive validity. RESULTS: A 23-item PedRHDS retained the a priori factor structure. Reliability ranged from 0.73 to 0.85 for the 23-item and 10- and 8-item short scales. PedRHDS (all forms) was associated with postdischarge coping difficulty (explaining 12%-16% of variance) and readmission (odds ratio = 0.71-0.80). DISCUSSION: The PedRHDS and both short forms (PedRHDS-SF10 and PedRHDS-SF8) are reliable and valid measures of parental discharge readiness that can be used as outcome metrics of hospital care and risk indicators for postdischarge coping difficulty and readmission.