How to Involve Families in the Cardiac Stepdown Unit: A Community Involvement Strategy .

1. How to Involve Families in the Cardiac Stepdown Unit: A Community Involvement Strategy. Bronwyn Bartle, DNP, CPNP-AC/PC Pediatric and Congenital Heart Center Duke University Hospital

3. Disclosures • I do not have any relevant financial relationships with any commercial interests to disclose.

4. How can we feel less like this? - We know we cannot read into the future – but we have to prepare for it. We try so hard to “get it right”, always feeling under pressure, hoping at the final hour it does not all blow up

5. An exciting up and down game for little people!!

6. And more like this? Shift our thinking: Strategic, collaborative, shared goals, multidisciplinary

7. What story are you writing? • Its like story cubes – we all use each of the 6 sided dice to tell the patient’s story. • No one tells the story in quite the same way. • The end user is the reader of the story.

8. Barriers and Buzzwords • Pediatricians are often “afraid” of our patients • Parents utilizing cardiology as their PCP • Parental education level, interest, and understanding • Community resources • Distance to hospital • Handoff, script, care transitions, transition of care meeting, teach back method, HMP, partnering, and medical home

10. Parent Experience with an Interstage Single Ventricle Home Monitoring ProgramBronwyn Bartle DNP, CPNP, Barbara Turner PhD, RN, Christoph P. Hornik MD, MPHJennifer S. Li MD MHS, Piers C.A. Barker MD • The concept of a medical home for children with chronic conditions has been increasingly investigated by several centers.18-20Antonelli, et al outlined the critical components for the creation of a successful pediatric medical home in a 2009 report for The Commonwealth Fund.21Strengths of the medical home are that it is patient/family centered; proactive, planned and comprehensive; it promotes self-care skills and independence; and emphasizes cross-organizational relationships. The website, www.medicalhomeinfo.org is dedicated to assisting providers and families alike in the creation of the medical home. A home monitoring program, as described in this study, aligns with the model of a medical home and the goals of the American Academy of Pediatrics to improve the systems by which providers deliver care for these complex infants.

11. What exactly is involved in a discharge? • Hospital staff prep + • Caregiver prep + • Community prep = • Put this together and you are on the path to setting up a successful medical home for comprehensive care of your patient

13. Overwhelming? I think not… • Engages parents even before admission • Teach back method builds confidence • Listen to how they explain their child to other family members – a window into their understanding • Satisfies list-makers and slackers alike! • Ensures everyone receives the same teaching. • Visualreminders • Always, always state – AT LEAST 24 hours of care

14. Hospital Staff Prep • Discharge consult • Case manager • Transition of care meeting • Can any RN in any location provide d/c teaching – ongoing debate

15. Caregiver prep to ready the home • https://www.ready.gov/individuals-access-functional-needs • Emergency Communication Plan (PDF) • Prepare for Emergencies Now, Information for People With Disabilities (PDF) • We Prepare Everyday (Video) • Be Informed (Video) • Make A Plan (Video) • Build A Kit (Video)

16. Caregiver • What to do when there are not community resources – home health or therapies, extra training for families • What about daycare – is a medical daycare OK • Can their car accommodate the child (do they have a car!) • What is the home set up (power, layout, etc) • Do they have a phone (that has service and bill is paid) • Find your local first responder

17. From University of Rochester Nursing alumni publication • Highlighting the benefits of BSN students seeing patients in their “natural environment” • “When patients come to the hospital they are in our domain. Its our rules, its our processes, its our routine. When we go into the community, the students enter the patients domain. It’s a very different feeling” ~ Leann Patel asst professor of nursing

18. Considerations at discharge • Should there be a journey board for the medical home?? • What would be included? • Be sure to include DME, home health, therapies info in d/c summary and that parents have that info • Make all appts prior to d/c • How long do community therapies take to establish, what are criteria for continued care? • What are plans for return/future surgeries – schedule pre Glenn cath prior to d/c

19. Community prep • How to partner with community agencies to improve care • Phone call at discharge to engage PCP • Ensure timely and complete communication of written info if no EMR sharing • Talks to local home health providers and DME (start with largest companies first) –be creative with a youtube link! • Waiting in the car with infant rather than in waiting room • Call local EMS – meet and greet – is it a volunteer agency, strongly DISCOURAGE driving the patient themselves • Include WCC in d/c summary – vaccines NBS, BAER, synagis candidate, flu shots

20. Medical Home! • A pediatric medical home is a family-centered partnership within a community-based system that provides uninterrupted care with appropriate payment to support and sustain optimal health outcomes. • https://www.aap.org/en-us/about-the-aap/aap-facts/AAP-Agenda-for-Children-Strategic-Plan/Pages/AAP-Agenda-for-Children-Strategic-Plan-Medical-Home.aspx

21. AAP medical home • Patient and Family-centered partnershipTrusting, collaborative, working partnership with families, respecting their diversity and recognizing that they are the constant in a child’s life • Community-based systemFamily centered- coordinated network designed to promote the healthy development and well being of children and their families • Transitions Provision of high-quality, developmentally appropriate, health care services that continue uninterrupted as the individual moves along and within systems of services and from adolescence to adulthood • Value Appropriate financing to support and sustain medical homes that promote system-wide quality care with optimal health outcomes, family satisfaction, and cost efficiency

22. Tools to use • The National Center for Medical Home Implementation Facebook Page includes weekly announcements on upcoming webinars, new tools, and more.The National Center for Medical Home Implementation YouTube Channel features a set of video interviews of medical home experts from across the country who provide practical ways to implement medical home in practice.

23. https://medicalhomeinfo.aap.org/tools-resources/Documents/NCMHI%20FEQIP%20Fact%20Sheet.pdfhttps://medicalhomeinfo.aap.org/tools-resources/Documents/NCMHI%20FEQIP%20Fact%20Sheet.pdf

25. Take Home Points • Careful thought to care transitions • Be transparent • Be sure the story you are writing is not a cliffhanger! • Supply the next caregiver with tools to succeed – whether that is the next provider or the parent or the pediatrician • The “system” you implement should run without you

26. For questions: • Bronwyn.bartle@duke.edu • 919-681-2343