NURSING On the Right Trach The Role of

NURSING MEDICALLY-COMPLEX CHILDREN BY THE NUMBERS • Defined as children with heterogenous medical conditions

NURSING PEDIATRIC TRACHEOSTOMIES AT TCH • Cohort of 426 patients between 2001 -2011 •

NURSING HISTORY OF TRACH EDUCATION AT TCH • Developed based on the American Thoracic

NURSING BARRIERS TO EDUCATION COMPLETION AND DISCHARGE • Social factors such as lack of

NURSING MODEL FOR TRACHEOSTOMY COORDINATOR TRACHEOSTOMY Resource to staff, patients and families Pre-trach consults

NURSING TRACH COORDINATOR ROLE • Serve on multiple house-wide trach-related committees • Implement QI

NURSING SIMULATION • Every family receives a 4 hour simulation training prior to rooming-in

NURSING TRACH EDUCATION BY THE NUMBERS • 59 patients and ~120 caregivers have been

NURSING BARRIERS TO EDUCATION • Lack of a second caregiver • Lack of caregiver

NURSING BARRIERS TO DISCHARGE • Patient status (e. g. PHTN, transplant) • Lack of

NURSING TRAINING STAFF • In FY 2018, over 600 staff trained in PICU/TICU and

NURSING STAFF SURVEY RESULTS • TICU staff surveyed (28% response rate) Primary role in

NURSING STAFF SURVEY RESULTS I feel comfortable teaching families about tracheostomy: I feel confident

NURSING STAFF SURVEY RESULTS Prior to the tracheostomy coordinator role, trach education in the

NURSING STAFF SURVEY RESULTS I feel confident in the caregivers’ trach skills after they

NURSING STAFF SURVEY RESULTS “I like how there is a coordinator who oversees the

NURSING FUTURE IMPROVEMENT AND RESEARCH • Accidental Decannulation – Lean Project • Qualitative research

NURSING REFERENCES • Dal’Astra A. , Quirino, A. V. , de Sousa Caixeta, J.

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NURSING On the Right Trach: The Role of the Tracheostomy Coordinator in Care Coordination of Medically-Complex, Tracheostomy-Dependent Children Erika Guillen, BSN, RN, CCRN Darlene Acorda, MSN, RN, CNE, CPNP-PC

NURSING MEDICALLY-COMPLEX CHILDREN BY THE NUMBERS • Defined as children with heterogenous medical conditions that often includes life-sustaining treatments. • Indications, complications, and epidemiological profile have changed over the past three decades. • >50% of children with tracheostomy are under 1 years old at the time of placement. • Average time the tracheostomy is present is 2 years. • Mortality associated with tracheostomy ranged from 0 to 5. 9% over the past three decades (Dal’Astra et al. , 2017).

NURSING PEDIATRIC TRACHEOSTOMIES AT TCH • Cohort of 426 patients between 2001 -2011 • Median patient age was 1. 5 years at time of tracheostomy • Age ranged between 3 days to 24 years • Most common indication: Congenital neurological disease (33%) • Median hospital LOS: 50 days • 53% had ventilator dependency at discharge • 38% underwent decannulation; median time of 5. 3 years • Mortality of 23% over a 10 year period (Mc. Pherson et al. , 2017)

NURSING HISTORY OF TRACH EDUCATION AT TCH • Developed based on the American Thoracic Society 2000 “Statement on Care of the Child with a Chronic Tracheostomy” • All patients were cared for in the Progressive Care Unit • Included a pre-tracheostomy consult process to better inform families • Median of 14 days to complete trach education • Multiple barriers to discharge identified (Graf et al. , 2008)

NURSING BARRIERS TO EDUCATION COMPLETION AND DISCHARGE • Social factors such as lack of transportation, sibling childcare was the most common barrier to education completion (20%) • 10% related to language barrier • 43% of families experienced at least one barrier to education • 20% had multiple barriers to education completion • 89% of families had at least one barrier to discharge • Majority of children were discharged home due to lack of chronic care facilities in our region (Graf et al. , 2008)

NURSING

NURSING MODEL FOR TRACHEOSTOMY COORDINATOR TRACHEOSTOMY Resource to staff, patients and families Pre-trach consults for potential trach patients Tailor education to meet families individual needs Coordination of trach education ENT rounds

NURSING TRACH COORDINATOR ROLE • Serve on multiple house-wide trach-related committees • Implement QI initiatives to target education and outcomes • Facilitate simulation training of caregivers • Re-education of established patients readmitted to critical care

NURSING

NURSING SIMULATION • Every family receives a 4 hour simulation training prior to rooming-in • Goal is to simulate trach emergencies in the home setting • Families are debriefed on their performance and discuss lessons learned • Highlight the 4 steps: Suction, Bag, Change the Trach, CPR • Involves Trach Coordinator, TICU Medical Director, Critical Care Attending, Clinical Specialist

NURSING TRACH EDUCATION BY THE NUMBERS • 59 patients and ~120 caregivers have been educated since the role started • 13. 3 days is the average time to completion of education • 27. 5 days is the median time to discharge • Since the beginning of the trach coordinator role, no caregiver has required re-education in the TICU

NURSING BARRIERS TO EDUCATION • Lack of a second caregiver • Lack of caregiver presence at bedside • Living far from the hospital (e. g. Louisiana) • Childcare and time off from work

NURSING BARRIERS TO DISCHARGE • Patient status (e. g. PHTN, transplant) • Lack of housing • Custody issues • Multiple social issues

NURSING TRAINING STAFF • In FY 2018, over 600 staff trained in PICU/TICU and CPCU/CICU • ~50 Acute Care super users trained • Expansion of the trach program to the Heart Center including training of 7 new trach educators

NURSING STAFF SURVEY RESULTS • TICU staff surveyed (28% response rate) Primary role in the TICU: Shift worked:

NURSING STAFF SURVEY RESULTS I feel comfortable teaching families about tracheostomy: I feel confident in my skills to take care of a patient with a tracheostomy :

NURSING STAFF SURVEY RESULTS Prior to the tracheostomy coordinator role, trach education in the PCU/TICU was a smooth process: Having a tracheostomy coordinator makes the education process for families go smoother:

NURSING STAFF SURVEY RESULTS I feel confident in the caregivers’ trach skills after they have received education through the tracheostomy program:

NURSING STAFF SURVEY RESULTS “I like how there is a coordinator who oversees the process/progress of parents in regards to trach education; and is able to help schedule and coordinate classes in a way that is beneficial to the families. ” “I like that there is one person (trach coordinator) we can direct our answers to. ” “The Trach Coordinator is knowledgeable and approachable and friendly with staff. I love the weekly emails. ” “I like that the parents are given all the resources to become competent and confident caregivers. ”

NURSING FUTURE IMPROVEMENT AND RESEARCH • Accidental Decannulation – Lean Project • Qualitative research on the experience of families learning to manage children with tracheostomies • Experience of parents undergoing trach simulation – area ripe for research • Evaluation of overall outcomes of trach education • Innovative ways of teaching families

NURSING REFERENCES • Dal’Astra A. , Quirino, A. V. , de Sousa Caixeta, J. A. , & Avelino, M. (2017). Tracheostomy in childhood: review of the lliterature on complications and mortality over the last three decades. Brazilian Journal of Otorhinolaryngology, 83(2), 207 -214. • Mc. Pherson, M. L. , Shekerdemian, L. , Goldsworthy, M. , Minard, C. G. , Nelson, C. S. , Stein, F. , & Graf, J. M. (2017). A decade of pediatric tracheostomies: Indications, outcomes, and longterm prognosis. Pediatric Pulmonology, 52(7), 946 -953. • Graf, J. M. , Montagnino, B. A. , Hueckel, R. , Mc. Pherson, M. L. (2008). Children with new tracheostomies: planning for family education and common impediments to discharge. Pediatric Pulmonology, 43(8), 788 -794.

NURSING COMMENTS/QUESTIONS?