Premature Life Transitions: A Patient- and Family- Centered End-of-Life Care Program for Neonates and their Families
This Always Event is dedicated to providing compassionate, patient and family centered end-of-life (EOL) care to approximately 90 families whose infants die every year in our Newborn Special Care Unit. The specific aims are 1) to create the infrastructure required to implement an innovative and systematically applied neonatal EOL care program and 2) to empower the neonatal interdisciplinary team with the knowledge and skills necessary to provide this level of care every day to every patient and family as they transition from curative to end-of-life care, infant death, and bereavement.
Home Medication and Education Support (HOMES): A resident module on home care in children
This study addressed the challenges that families face, when caring for chronically ill children, by training new physicians to be sensitive and responsive to parents needs and to proactively provide parents with the support need to successfully care for children with chronic conditions at home. The overarching goal was to develop a curriculum to give residents the knowledge and clinical skills needed to support safe home medication use for children and families in their practice.
Development and implementation of a multifaceted intervention, MyStory, to have all care interactions with children begin with a meaningful conversation between care providers, patients, and families. MyStory will capture the patients’ values, preferences, and expressed needs, and document it where it can be viewed and used by all care team members. Implementing MyStory as an Always Event as children are admitted to the hospital will ensure we capture the “story” of each child and use the information to involve children in care decisions and care planning.
Project PARIS: Parents and Residents in Session
Implement and test a novel approach to teach pediatric residents about patient and family-centered care (PFCC). The approach calls for a supervised meeting between a family member of a previously hospitalized child and a resident in the context of a pediatric residency rotation (behavioral and developmental pediatrics). For this “proof-of-concept” phase, meetings will be conducted with all pediatric residents in our institution. The meeting is standardized and is supplemented by a discussion with a faculty member.
Caring for Children with Special Health Care Needs: An Online Medical Home Professionalism Curriculum for Pediatric Residents
This initiative is an experiential and online curriculum to help pediatric residents acquire the necessary knowledge, attitudes, and skills to deliver effective, patient‐centered care to children with special health care needs. This initiative will utilize direct experience in care delivery, individual and collective reflections, and collaboration with a broad health care and community team, all in the setting of residency continuity clinic experience. A component of this initiative is for residents to engage in reflective blogging with feedback from faculty and peers as an innovative method to learn professionalism in the context of caring for children with special healthcare needs in resident continuity clinics.
The Always Eventis proposed as having four goals: 1) to offer each newly diagnosed family at St. Jude a trained parent-mentor, offering support and encouragement throughout the trajectory of the child’s treatment including the transition into survivorship or bereavement, 2) to provide the family the opportunity of acceptance, while facilitating coping mechanisms and hope, 3) empowering providers and the family as a partner and in their communication with St. Jude staff in their child’s treatment, and 4) providing a resource of services offered by St. Jude and the community.