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After initial testing and revision of the PTHSI, final instrument administration and analysis reveal the instrument to be valid and reliable. Future studies are planned to evaluate its responsiveness in longitudinal application.

Objectives:To examine the strengths and opportunities for improvement of current home care education practices to inform the development of the Home Care for Heart Health intervention, and to develop a web-based intervention for parents and clinicians with complimentary print materials that could provide the right education at the right time to foster a safer transition from hospital to home.Methods:An inter-professional focus group of parents, clinicians, and designers was formed to co-create a home care education intervention for parents of children with congenital heart disease (CHD) and their care team. We used the Integrated New Product Development process model created by Jonathon Cagan and Craig Vogel at Carnegie Mellon University to develop the intervention. This process model is a way of thinking that combines horizontal and inter-disciplinary teams, stakeholder-centric focus, and a system of qualitative discovery and development evolving towards quantitative methods of refinement.Results:Our team developed the Home Care for Heart Health intervention. The evidenced-based intervention includes a quick reference guide for parents of children with CHD, an accompanying app, family-friendly pathways, and clinician education.Conclusion:Using an inter-professional approach, our team of clinicians, parents, and design experts were able to co-create a clinician–parent home care education intervention with broad application and lifelong relevance to the Congenital Heart Disease Community.Practice Implications:Our intervention has the potential to be used as a model for other home care education interventions for parents of children with chronic illnesses.

Extravasation of medications during peripheral intravenous (PIV) therapy can result in harm to pediatric patients. These medications have physical and/or biologic factors that cause tissue damage. To assist in clinical decisions when using these infusates, an evidence-based table of medications stratified by their relative risk of causing harm if extravasated was developed. Local data and experience, a systematic review of the pediatric literature, and measured pH and osmolality of common pediatric preparations of PIV infusates were used to create a 3-tiered table of PIV infusates categorized by relative risk of causing harm if extravasated.

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The results of this integrative review inform our understanding of the parent-nurse communication process. The findings provide nurses with an understanding of strategies to better engage in respectful, engaging, and intentional communication with parents of hospitalized technology-dependent children and improve patient outcomes.

BACKGROUND AND OBJECTIVES: Families of children with medical complexity are experts on their child's baseline behavior and temperament and may recognize changes in their hospitalized child's health before clinicians. Our objective was to develop a comprehensive understanding of how families identify and communicate their child's deteriorating health with the hospital-based health care team. METHODS:In this qualitative study, our multidisciplinary team recruited family members of hospitalized children with neurologic impairment. Interviews, conducted in the hospital, were audio recorded, deidentified, and transcribed. By using inductive thematic analysis, each transcript was independently coded by 3 or 4 team members. Members met regularly to reach consensus on coding decisions. Patterns observed were organized into themes and subthemes.RESULTS: Participants included 28 family members of 26 hospitalized children 9 months to 17 years of age. Children had a mean of 9 hospitalizations in the previous 3 years. Analysis resulted in 6 themes. First, families often reported their child "writes his own book," meaning the child's illness narrative rarely conformed to textbooks. Second, families developed informal, learned pathways to navigate the inpatient system. Third, families stressed the importance of advocacy. Fourth, families self-identified as "not your typical parents" and discussed how they learned their roles as part of the care team. Fifth, medical culture often did not support partnership. Finally, families noted they are often "running on empty" from stress, fear, and lack of sleep.CONCLUSIONS: Families of children with medical complexity employ mature, experience-based pathways to identify deteriorating health. Existing communication structures in the hospital are poorly equipped to incorporate families' expertise.