FPQC Key Resources

• Toolkit
• Key Driver Diagram
• Quick Start Guide

FPQC Data Resources

• Patient-level Data Collection Form  
• Hospital-level Data Collection Form
• Instructions for Data Submission
• Measurement Grid

General Resources

• 2022 Interdisciplinary NICU Discharge Guidelines and Recommendations 
• Canadian Paediatric Society Position Statement on Discharge Planning of the Preterm Infant

Secondary driver 1a: Educate caregivers to take ownership of infant care

Resources

• Baby Steps to Home: A step-by-step educational tool for NICU nurses and parents, featuring customizable resources to prepare parents for their baby’s transition home.
• NICU to Home: Recommendations of a comprehensive NICU discharge preparation program. Includes discharge education resources, planning tools, planning team, and an educational philosophy.
• Discharge education: Comprehensive list of discharge education curriculum from the Interdisciplinary Guidelines and Recommendations for NICU Discharge Preparation and Transition Planning. Includes infant care skills demonstration, family comprehension assessment, timing of discharge education, and some elements to support family education.
• NICU Discharge Parent Education Videos: AAP YouTube playlist in Spanish and English.
• Recommendations for Families with Limited English Proficiency: Guidelines for engaging and supporting families with limited English proficiency.
• Hand to Hold: A free smartphone app endorsed by the NPA that offers support groups, counseling, educational content, and other resources to NICU families and providers.

Additional Resources

• NICU 101--The Essential Guide for NICU Parents: Example of a parent guide from Children’s Hospital of the Kings’ Daughters
• Going Home from the NICU: An example of a family discharge checklist from Beth Israel Deaconess Hospital.
• MPQC Discharge Planning Materials: This bundle includes a sample family discharge checklist, sample nurse discharge planning worksheet, and sample discharge summary format from the Massachusetts Perinatal Quality Collaborative.
• Baby Steps to Home: Free online resource from NANN available to all hospitals across the country. Topics in the module have sections with content for both nurses and parents.
• Improving Discharge Planning Poster: This poster from Aurora Women’s Pavilion discusses the results from a project implementing a NICU discharge roadmap.
• ICU Baby: Program at South Miami Hospital and Holtz’s Children’s Hospital that provides resources to NICU families including informational support, videos, peer mentors, transportation assistance and more.

Secondary driver 1b: Implement a discharge planning tool starting at admission

Resources

• Discharge Roadmap for Families: A NICU Roadmap is the visual schematic that outlines the time span from NICU admission to NICU discharge with tasks, education goals, milestones, and care needs to complete.
• NICU Discharge Planning Worksheet: A discharge worksheet allows hospital staff to engage families in discharge planning.
• Discharge planning tools: Includes essential elements of the discharge summary and recommendations for different planning tools from the Interdisciplinary Guidelines and Recommendations for NICU Discharge Preparation and Transition Planning.
• Example of a Path to Discharge (Winnie Palmer)

Secondary driver 1c: Engage care team to coach parents on infant care skills needed for transition to home admission

• Recommendations for NICU Discharge Planning: Recommended discharge planning checklist elements from the Canadian Paediatric Society.
• Caring for Kids: This website provided by the Canadian Paediatric Association provides information on keeping children safe around the home.
• AAP Safe Sleep Guidelines: This article explains the AAP safe sleep policy for families.
• Getting Ready to Go Home From the NICU: Families and providers can use this March of Dimes website to reinforce discharge teaching and families can access it from home.
• Discharge Teaching Example: A discharge teaching booklet for families from El Camino Hospital.
• AHRQ Transitioning Newborns from NICU to Home: This 2017 toolkit includes resources for hospitals that wish to create a Health Coach Program to help families with the transition home from the NICU, tools for coaches, information packets for parents and families, a NICU needs assessment, clinical materials to share with primary care providers of NICU graduates, and a follow-up telephone survey.

Secondary driver 2a: Assess family needs and connect to resources 

Resources

• Poverty and Child Health in the United States: Policy statement from AAP recommending universal social risk screening and referral to community resources in pediatric clinical care. 
• Current State of HRSN Screening in NICU: Reviews the current state of HRSN screening in NICU’s across America. 
• The SHARE Approach: The Agency for Healthcare Research and Quality developed a five-step process on shared decision-making that includes a training curriculum and tools. 
• Implementing Social Risk Screening and Referral to Resources in the NICU: Shows a QI methodology to implement Social Risk Screening and referral in the NICU and provides an example of a screening tool. 
• Approaches to Addressing Social Determinants of Health in the NICU: A Mixed Methods Study: Provides an overview of why it is important to have a standardized screening process for HRSN in the NICU.
• Association of Social Factors and Time Spent in the NICU for Mothers of Very Preterm Infants: Shows that social factors are associated with maternal time spent in the NICU. 
• Screening for Social Needs: This guide from the American Hospital Association provides techniques for hospital teams to engage patients in conversations about screening for their health-related social needs. It includes skills needed for engaging in conversations, elements needed for referral workflows, and strategies for connecting patients to community resources.
• Health Leads Social Needs Screening Toolkit: This toolkit includes health-related social needs screening tools, tips on how to screen patients, and a large bank of questions to customize screening for individual facilities.
• Screen and Intervene: A Toolkit for Pediatricians to Address Food Insecurity: This toolkit developed by the American Academy of Pediatrics and the Food Research & Action Center outlines how pediatricians can play a critical role in addressing food insecurity.
• Healthy Start Connect: This flyer provides information for pregnant women and families with young children who may find it difficult to locate and support that meets their needs. Connect provides a one-stop entry point for services such as education and support for childbirth, newborn care, parenting skills, child development, food and nutrition, mental health, and financial self-sufficiency

Secondary driver 2b: Train and commit to dignity and respect in all family interactions

Resources

• Respectful Care Commitment for NICU Families (FPQC)
• A 4-Step Framework for Shared Decision-Making in Pediatrics 
• NICU discharge preparation and transition planning: guidelines and recommendations
• Parental satisfaction with neonatal intensive care units: a quantitative cross-sectional study 
• Tip Sheet: Ten Ideas to Improve Family-Centered Care (CPQCC):Offers actionable strategies to promote FCC in the NICU.
• Parents' and nurses' experiences of partnership in neonatal intensive care units: A qualitative review and meta‐synthesis
• When a common language is missing: Nurse–mother communication in the NICU. A qualitative study
• Implementing the New ANA Standard 8: Culturally Congruent Practice: Records the history of the revised scope and standards and new Standard 8, the reasoning behind this standard and its impact on nursing practice, education, and research. 
• NICU quality of care: a qualitative study of family and clinician accounts: A qualitative study describing differences in NICU quality of care. 
• Former NICU Families Describe Gaps in Family-Centered Care: A qualitative study describing FCC experiences.
• A Trauma-Informed Culture of Care: A YouTube video featuring Mary Coughlin, MS, RNC-E, sharing trauma-informed strategies to improve patient and family care; as well as addressing healthcare worker fatigue and burnout.

General Resources

• 2022 Interdisciplinary NICU Discharge Guidelines and Recommendations
• 2013 NICU Discharge Preparation
• 2008 AAP Statement on Hospital Discharge of the High-Risk Neonate
• Small and Sick Newborn Care Toolkit: This comprehensive toolkit includes contributors from 52 countries and is based on WHO and UNICEF guidelines for implementing small and sick newborn care services. There is a section on family centered care and post-discharge follow-up. Each section contains resources, tools, webinars, and references. Below is the toolkit table of contents with links to the website:
  • Data Systems & QI
  • Leadership & Governance
  • Human Resources
  • Equipment & Commodities
  • Financing
  • Infrastructure
  • Referral System
  • Family Centered Care
  • Linkages to Maternal Care
  • Post-Discharge Follow-Up
  • Infection Prevention & Control

Secondary driver 3a: Orient caregivers to primary care/medical home

• Considerations When Choosing a Provider: Questions to guide hospitals and parents in selecting an appropriate PCP.
• PCP Discussion Elements: Recommended discussion elements for handoff to PCP/medical home.
• Example List of Pediatricians – coming
• Example PCP Discussion Agenda – coming soon

Secondary driver 3b: Coordinate referrals to subspecialist/rehabilitation services/mentoring programs

• Recommended Care Plan Elements: Recommended elements for a patient-specific care plan.
• NICU Community Resource Template: A template for hospitals to fill out with local resources to share with hospitals and contains general resources as well.
• Florida Birth Defects Surveillance Program Community Based Research provides resources for families of infants and children with special healthcare needs or disabilities. Resources on their website include:
  • Statewide Resource Guide: provides information on more than 100 active organizations, support groups, non-profits, and medical and therapeutic centers dedicated to providing advocacy, information, health care, support, recreational activities, etc. for children with special healthcare needs and their families. Guide is updated annually.
  • Birth Defects Brochure: can be shared with families of infants with special healthcare needs in the NICU. Provides general information on disabilities, family supports and resources. (Spanish version) (Haitian Creole version) (Portuguese version)
  • Hurricane Preparedness Handout: provides information on hurricane preparedness for pregnant women, families with infants, and families with children with special healthcare needs. (Spanish version)
  • Special Needs Shelter Packing List: emergency shelter packing list for families with infants and children with special healthcare needs. Handout is in English and Spanish.
• Medicaid Health Plan Case Management Services Referral List – coming soon
• Example of Patient-Specific Care Plan – coming soon
• Early Steps provides early intervention services to eligible infants and toddlers, from birth to 36-months, with developmental delays, disabilities and at-risk conditions. (Spanish version)
  • Eligibility and screening: Children who have an established condition that place them at risk of developmental delay may be eligible for services through Early Steps. (Spanish version)
  • Make a referral: These can be made by anyone including health care providers, parents and caregivers, family members, friends and others. There is no income requirement to qualify for the program. Early Steps pays for services not covered by public or private insurance. (Spanish version)
  • Provider resources: Download Part C Fee Schedules, the Provider Master List, and educational information to share with patients.

Secondary driver 3c: Provide a comprehensive discharge summary to caregivers and care team

• Neonatal Discharge Summary: Sample format of a discharge summary.
• Recommended Discharge Summary Elements: Recommended elements to include in a discharge summary, including general recommendations for how to format and distribute. 
• NICU Discharge Planning Worksheet: See driver 1b for this resource.
• NICU Discharge Order Set: Recommended elements to be ordered by the provider for a comprehensive discharge and transition home.
• Recommended Follow-Up Call Elements: Recommendations for the 3-day follow-up call to families.
• Recommendations for Families with Limited English Proficiency: See driver 1a for this resource.
• Caregiver Education Approaches – coming soon
• Example Letter of Necessity – coming soon
• Example Follow-Up Phone Call Agenda or Worksheet – coming soon