Overview

• This quality improvement project implementation guide is available to assist American Academy of Pediatrics (AAP) chapters, Maternal and Child Health Title V/Children and Youth with Special Health Care Needs programs (MCH Title V / CYSHCN programs), clinical practices, and other organizations interested in implementing a quality improvement/Maintenance of Certification Part 4 project. All resources are free of charge and available for customization.

Definition

• Family engagement is a family-centered and strengths-based approach to making decisions, setting goals, and achieving desired outcomes for children and families.
• Family engagement is an innovative approach grounded in mutually beneficial partnerships among health care providers, patients, and families.
• Family engagement and family-centered care improves patient and family outcomes, increases family and clinician satisfaction, decreases health care costs, and improves effective use of health care resources.

Top Resources

• The following are resources foundational to the implementation of a family engagement quality improvement project. Please note that these are only 5 of the many resources available in this implementation guide.
• Aim and Measures
• Enhancing Family Engagement through Quality Improvement: Lessons Learned from the Family Engagement Quality Improvement Project
• Change Package
• Parent/Caregiver Partner Position Description
• Pre- and post-implementation Survey

Prerequisites for Project Planning

• Before initiating a family engagement quality improvement project, organizations and practices should consider if they meet a few prerequisites that support successful planning and implementation, including the following:
• Are there entities, such as practices or individuals, that are ready to make a change to enhance family engagement within your community, state, and/or organizations?
• Are there appropriate resources available within your organization to support implementation of this project? These resources could include technology and budget to support a shared work-space and virtual meetings (conference calls, webinars) and support staff to coordinate efforts?
• Is there a strong team leader or champion who has the interest and capacity to lead quality improvement efforts within each practice site? This individual does not have to be a pediatrician.
• Seek feedback from stakeholders including parents and caregivers. Are there individuals within a practice who would participate in a multidisciplinary team or who would share diverse perspectives? A diverse quality improvement core improvement team facilitates improvement activities and should include representation of individuals impacted by the project.  

Project Planning

• Resources in this section will assist in planning a family engagement quality improvement (QI) project. Sample Institutional Review Board (IRB) and Maintenance of Certification (MOC) applications and supporting documentation are included.
• Institutional Review Board Narrative
• Maintenance of Certification (MOC) Part 4 Narrative
• Sample Appendices for IRB and MOC Applications
• Aim and Measures
• Recruitment Application
• Project Recruitment Flyer
• Recruitment Email
• Practice Teams Consent Form
• Medical Record Review Tool
• Medical Record Review Tool Tip Sheet
• Post Visit Family Survey English
• Post Visit Family Survey Spanish
• Pre- and post-implementation Survey
• Learning Session Evaluation
• Monthly Progress Report
• Monthly Educational Calls and Webinar Survey
• Parent/Caregiver Partner Position Description
• Qualitative Interview Script Parent Partner
• Qualitative Interview Script Practice Team
• Parent Partner Qualitative Interview Consent Form
• Invitation to Participate in Qualitative Interview for Parent/Caregiver Partners
• Eligibility to Participate Notification Email
• Notification of Non-Selection Email
• Certification of Participation
• Sample Appendices for MOC Application only
• Project measures table
• Change Package

 Pre-work, Orientation, and Baseline Data Collection

• The materials in this section will support planning for participant orientation, project overview and goals, and requirements.
• Pre-Work Packet
• Orientation Webinar
• Pre-Implementation Survey

​Learning Session(s)
Learning sessions allow participants to meet project staff, the quality improvement advisors/coaches and other participants face-to-face and discuss the project and available resources. Sample materials for these sessions are included below. To access PowerPoint™ slides for the presentations listed below, email medical_home@aap.org.

• Learning Session 1
• Agenda
• Agenda Book
• Presentation Topics
• Helpful Tools for Parent Partners
• Introduction to Family Engagement
• Model for Improvement
• Quality Improvement for Parent Partners
• Shared Decision Making
• Sustainability
• Story Board Presentations
• Instructions
• Presentation Template
• Learning Session 2
• Presentation Topics
• Sustain and Spread
• Parent Panel Template Presentation

​Action Period
Action periods involve participants implementing interventions such as small-scale changes using the Plan, Do, Study, Act (PDSA) cycle. The action period also includes data collection, narrative progress reports, and educational webinars. Resources used for action period(s) are included below.

• Change Package
• A change package is a compilation of practical tools and resources that are used to test changes in practice (or, implement Plan, Do, Study, Act [PDSA] cycles).
• Sample PDSA cycles are listed below, demonstrating how tools/resources in the change package can be tested in practice.
• Fostering Shared Decision-making with Patients and Families
• Enhancing Family Engagement
• Obtaining Family Feedback Pre-visit Contact Form
• Connecting Families to Appropriate Supports and Services FCC Care Coordination
• Connecting Families to Appropriate Supports and Services Strengthening Families
• Family Resources for Pediatric Practices
• Creating a Care Plan
• Monthly Education Calls and Webinars
• The following is the list of topics covered in monthly education calls and webinars. To access PowerPoint™ slides for each webinar, please contact medical_home@aap.org. 
• Engaging Families through Shared Care Planning
• Strategies to Engage Families in Quality Improvement Initiatives
• Family Advisory Councils: Working with Patients and Families as Advisors
• Acknowledging Family Strengths: Conversations with Families
• Shared Decision-making
• Monthly Education Calls and Webinar Survey
• Progress Reports

Post-Implementation
Once action periods are complete, post-implementation resources can be customized to assist in evaluating successes and challenges of the project.

• Post-Implementation Survey
• Qualitative Interview Guide/Questions
• Parent/caregiver partner
• Practice team
• Parent/caregiver participation consent form

​Lessons Learned

• Family engagement is a continuum. Clinical teams and practices vary in their levels of foundational knowledge and expertise in the topic area.
• Practices are beyond the "what" and "why" and want to focus on "how"; Maternal and Child Health Title V / Children and Youth with Special Health Care Needs programs can support practice teams in these efforts.
• Parent/caregiver partners are important, but clear roles and responsibilities are crucial to success.
• Small changes are key to success.
• Quality improvement science and related methodologies take time to learn and implement.
• Teams can be busy and it is not always possible to meet face-to-face. Innovative strategies to meet as a team are needed, such as flexible hours or meeting during nights/weekends.
• The fact sheet, Enhancing Family Engagement through Quality Improvement: Lessons Learned from the Family Engagement Quality Improvement Project, provides more information about lessons learned during the Family Engagement Quality Improvement Project.

​Results

• Participating teams reported a 77.8% increase in knowledge of family engagement
• All participants reported that they made clinical improvements because of the project, including the following:
• Focusing on family strengths
• Communicating directly with the patient rather than just the parent
• Incorporating shared decision-making
• Utilizing the teach-back method for improving patient-provider communication
• Most participants reported that they had implemented practice-level improvements as well, including the following:
• Developing policies and procedures for referral tracking and follow-up
• Making their patient portal and website more parent-friendly
• Increasing the number of front desk staff to enhance patient communication
• Creating handouts to help parents choose a specialist
• Inviting parents to speak at staff meetings
• Final aggregate run charts
• Medical Record Review Tool
• Post-visit Family Survey
• Summary of Key Findings

Acknowledgements

​The National Center for Medical Home Implementation is supported by the Health Resources and Services Administration (HRSA) of the US Department of Health and Human Services (HHS) under grant number U43MC09134. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the US Government.

For more information about the Family Engagement Quality Improvement Project or materials included in this implementation resource guide, please contact us here.