The Transition from Hospital to Home in Parents of Pediatric Solid Organ Transplant Recipients

Readiness for hospital discharge is an under-investigated topic in pediatric solid organ transplant. The immediate post-operative period and first few weeks after transplant are a critical time period where patients are at high risk for transplant-related complications. A correlation design framed by Meleis\u27 Transitions Theory were used to determine; (1) the influences of discharge teaching and care coordination on parent readiness for hospital discharge among parents of children who have experienced solid organ transplantation; and (2) the relationship of parent readiness for hospital discharge with coping, adherence difficulty, utilization of healthcare resources, and family impact in the first three weeks following discharge from the hospital. Qualitative data were used to supplement quantitative findings. Thirty seven parents from three pediatric transplant centers participated. Participants completed questionnaires on the day of hospital discharge and three weeks following hospital discharge. Regression analysis for quantitative data and content analysis for qualitative data were used to identify significant relationships and themes. Results contribute to the understanding of important issues surrounding the discharge transition in a specific pediatric chronic illness population. 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. Implications for nursing practice, nursing education and nursing research are identified. Identifying parents who are not ready to go home from the hospital following their child\u27s solid organ transplant provides an opportunity to offer additional transitional services so parents can effectively manage their child\u27s recovery and continuing care at home. Transitions theory provides a useful framework for conceptualizing and investigating the discharge transition of parents of children experiencing solid organ transplant. Results fill the current gap in knowledge and contribute to the advancement of nursing science

Parents’ Perspectives on Shared Decision Making for Children With Solid Organ Transplants

Introduction The Institute of Medicine prioritizes active family and clinician participation in treatment decisions, known as shared decision making (SDM). In this article we report the decision-making experiences for parents of children who had a solid organ transplant. Method We performed a prospective longitudinal mixed methods study at five major U.S. children\u27s medical centers. Qualitative interview data were obtained at 3 weeks, 3 months, and 6 months after hospital discharge following the child\u27s transplant. Results Forty-eight parents participated in the study. Three themes were identified: (a) Parents expect to participate in SDM; (b) parents seek information to support their participation in SDM; and (c) attributes of providers\u27 professional practice facilitates SDM. SDM was facilitated when providers were knowledgeable, transparent, approachable, accessible, dependable, and supportive. Conclusions Parents expect to participate in SDM with their transplant team. Health care providers can intentionally use the six key attributes to engage parents in SDM. The results provide a framework to consider enhancing SDM in other chronic illness populations

Challenge With Care: Reflections on Teaching Excellence

A number of faculty have had no formal preparation to teach. Because little nursing research has focused on teaching excellence in recent years, when both nursing practice and approaches to teaching and learning have changed remarkably, this analysis integrates present perspectives and the research foundation for teaching nursing. A constant comparative method incorporating 27 doctoral student reflections and analysis of literature from 1960 to present resulted in four major categories: know and honor students, enthused, knowledgeable, and student centered. Linking the major categories, an Excellent Teacher Circle of Distinction emerged, described as “with enthusiasm and compassion the teacher engages the students and invites learning in a non-judgmental manner, yet, expectations of reciprocal respect and perseverance are present.” Better understanding of this foundation can provide direction for those new to teaching, as well as experienced faculty, so as to better prepare the nurses of tomorrow

Pediatric Nurses\u27 Perspectives on Medication Teaching in a Children\u27s Hospital

Purpose To explore inpatient pediatric nurses\u27 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\u27 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

An mHealth App-Based Self-management Intervention for Family Members of Pediatric Transplant Recipients (myFAMI): Framework Design and Development Study

Background Solid-organ transplantation is the treatment of choice for children with end-stage organ failure. Ongoing recovery and medical management at home after transplant are important for recovery and transition to daily life. Smartphones are widely used and hold the potential for aiding in the establishment of mobile health (mHealth) protocols. Health care providers, nurses, and computer scientists collaboratively designed and developed mHealth family self-management intervention (myFAMI), a smartphone-based intervention app to promote a family self-management intervention for pediatric transplant patients’ families. Objective This paper presents outcomes of the design stages and development actions of the myFAMI app framework, along with key challenges, limitations, and strengths. Methods The myFAMI app framework is built upon a theory-based intervention for pediatric transplant patients, with aid from the action research (AR) methodology. Based on initially defined design motivation, the team of researchers collaboratively explored 4 research stages (research discussions, feedback and motivations, alpha testing, and deployment and release improvements) and developed features required for successful inauguration of the app in the real-world setting. Results Deriving from app users and their functionalities, the myFAMI app framework is built with 2 primary components: the web app (for nurses’ and superadmin usage) and the smartphone app (for participant/family member usage). The web app stores survey responses and triggers alerts to nurses, when required, based on the family members’ response. The smartphone app presents the notifications sent from the server to the participants and captures survey responses. Both the web app and the smartphone app were built upon industry-standard software development frameworks and demonstrate great performance when deployed and used by study participants. Conclusions The paper summarizes a successful and efficient mHealth app-building process using a theory-based intervention in nursing and the AR methodology in computer science. Focusing on factors to improve efficiency enabled easy navigation of the app and collection of data. This work lays the foundation for researchers to carefully integrate necessary information (from the literature or experienced clinicians) to provide a robust and efficient solution and evaluate the acceptability, utility, and usability for similar studies in the future

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 3 weeks 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

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\u27s care at home after discharge. Problem No theory‐based discharge intervention exists to guide pediatric nurses\u27 preparation of parents for discharge. Purpose To develop a theory‐based conversation guide to optimize nurses\u27 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\u27s 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

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\u27s 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

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

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.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/98814/1/petr12090.pd