Innovative Practice Strategies: Engaging Families as Partners

Edward Curry, MD, FAAP

Judith Shaw, EdD, MPH, RN, FAAP
Elizabeth Wall, Teaching Assistant
Session I1118: 2016 NCE
10/22/2016
Agenda

Introduction & Background

Basics of Family Engagement
Liz’s Story & Experiences
Group Discussion
Tips & Strategies
Resources

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Faculty Disclosure: Edward Curry

In the past 12 months, I have no relevant financial

relationships with the manufacturer(s) of any
commercial product(s) and/or provider(s) of commercial
services discussed in this CME activity.

I do not intend to discuss an unapproved/investigative use

of a commercial product/device in my presentation.

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 Faculty Disclosure: Judith Shaw

In the past 12 months, I have no relevant financial relationships with

the manufacturer(s) of any commercial product(s) and/or
provider(s) of commercial services discussed in this CME activity.

I do not intend to discuss an unapproved/investigative use of a

commercial product/device in my presentation.

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 Changes in Practice

Participants will be able to:

Define patient and family engagement

Identify and implement strategies for partnering

with patients and families at the practice level

Identify and implement strategies for partnering

with patients and families at the individual level

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What is Patient- and Family-Centered Care?
? An approach to the planning, delivery, and
evaluation of healthcare governed by mutually
beneficial partnerships between healthcare
providers, patients, and families.

PFCC practitioners:
- Recognize vital role families play in ensuring the
health and well-being of infants, children,
adolescents, and family members
- Acknowledge that emotional, social, and
developmental support are integral components of
health care
- Promote health and well-being of individuals and
families and restore dignity and control to them

Source: Institute For Patient- and Family-Centered Care

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What is Patient- and Family-Centered Care?
? “Triple C” – Compassionate, Collaborative Care

1. Involve patients and families as partners in health

professional education, their own care and in co-
designing healthcare delivery

2. Educate about the importance of “The Triple C”

and align salient competencies with existing
education, assessment and standards

3. Measure“The Triple C” at all levels - study its

outcomes

4. Incentivize and reward “The Triple C”

Source: Schwartz Center

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 What is a Family-Centered Medical Home?
?
Family-Centered Medical Home

is not a building. It is an approach to

providing comprehensive primary care that
facilitates partnerships between patients,
clinicians, medical staff, and family

In a FCMH, the pediatric care team works

in partnership with a child and a child's
family to assure that all of the medical and
non-medical needs are met.

Source: National Center for Medical Home

Implementation

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 AAP’s FamilY Partnerships Network

Established in 2014, the FamilY Partnerships Network (FPN) is an

advisory group to the AAP Board of Directors, which has a goal of
developing and implementing a strategy to expand the opportunity for
parent/family/youth input and participation in AAP activities and programs.

Mission
To be a resource for and promote understanding among
Academy members of the importance of patient and
family-centered care and the roles for families in health
care and in health care redesign, and to develop and
implement a strategy to expand family and youth input and
participation in AAP activities and programs.

Source: FamilY Partnerships Network 9

 Principles For Family Engagement
Family Engagement?
The family is the principal caregiver and the center of
strength and support for children.
The AAP recognizes that perspectives and information provided by families, children, adolescents, and
young adults are essential components of collaborative decision-making in the delivery of high-quality,
safe, and compassionate care. Patients and their families are integral partners of the health care team.
The AAP recognizes the value of diversity among patients, families, and pediatricians. The delivery of
care within the context of appropriate physician knowledge, understanding, and appreciation of cultural
and population distinctions take into account families’ experiences, beliefs, values actions, customs,
and unique health care needs.
Recognizing, valuing, and building on the strengths of individual children and families and empowering
them to discover and communicate their own strengths, build confidence, and partner in making
choices and decisions about their health care is vital to optimal health and development.

To promote improved patient, family, and physician experiences and outcomes, the AAP encourages
and supports family engagement in its core competencies of education, practice, research, and
advocacy.

Source: FamilY Partnerships Network 10

Parent Partner
Elizabeth Wall

Contact: lizwa@wasatchpeds.net
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 Evolution of the Parent Partner Role

● 1st introduced as part of a quality

improvement project

● 1st project to identify patients with complex

medical needs

● Responsibilities:
 Input on how to improve an office visit for a
Child with Special Health Care Needs
 Started with outreach phone calls

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Today…the Parent Partner

25 – 30 hours per week in the clinic (paid)

Meet patients during office visits
Pre appointment phone calls
Help office see patient perspective
Address social needs of patients
Guide patients through diagnosis and
treatment (been there, done that)
Work closely with Care Coordinator to
address whole patient
Lead Family Council

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 Qualities
What Qualities Should You Look
for in a Parent Partner?
 Parent of Special Needs Child
 Right Time & Place in Life
 Emotionally stable & available
 Discretion
 The ability to support a patients treatment plan
 Resiliency
 Knowledge of systems & resources
 The ability to fit into a practice
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My Family’s Story

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My Family’s Story

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Our Medical Home Team

Front Desk

Doctor

Parent Partner / Care Coordinator

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 Landon

• Ongoing relationship with

CC due to changing
Cerebral Palsy
medical needs
• 12 years old
• Cognitive impairment • PP pre-visit call for
• Fine motor delay parent-to-parent support
• Urinary dysfunction
• Speech ataxia • Great relationship with
• Seizure disorder primary care physician
• Wheelchair dependent
• Everyone was asking the
“right” questions
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 Where Things Changed
 Mom stops in our office to say “Hi” after an office visit.
We start talking about some of the challenges of having
a Child with Special Needs
 Family challenges
 Lack of support

Landon  Respite
 School challenges
 IEP (Individualized Education Plan)

 Physical challenges
 Day to day routine
 DME equipment

 Financial challenges
 Copays, medication expenses, services
 How to pay for equipment

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The Team

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 Physician Perspective

Liz brings compassion to the families

we serve and a special kind of
credibility to the care we give. I don't
know how I got along without her
before and I can't imagine being
without a Parent Partner and Care
Coordinator in our office!

-Dr. Kathy Ostler

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Group Discussion

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 Levels of Involvement

Adapted with permission from: Family Engagement in Quality Improvement, Jill Rinehart,
MD, FAAP; Shelly Waterman, VT Family Network 23
 QUIZ: What is Family-Centered Care?

A. Listens carefully
B. Spends time with the child and the family
C. Is sensitive to the values of the family
D. Provides needed information
E. Makes the parent feel like a partner
F. All of the above

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QUIZ: Why Parent Partners in Practice?

A. Fosters understanding and cooperation

B. Promotes respectful, effective partnerships
C. Results in efficient planning to ensure
services meet family needs
D. Provides mechanism for consumer input
E. Parent partners have valuable stories and
insights to share
F. All of the above
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 Primer for Clinicians

Don’t forget the basics…

 Introduce yourself
 Use common language
 Make real time for questions/discussion
(2-way conversation)
 Respect goes both ways; make decisions together
 Start with “just one thing”
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 Family Engagement: Perspectives
Pros & Opportunities
Leads to better outcomes Builds trust and
-- prevention and creates a partnership
management of care with clinicians

Improves the
Family/Parent/
Clinical quality of care
Advocate
Perspective
Perspective
Learning from one
another and
appreciating what Collaboration improves
each other brings to communication between all
the table members of the care team
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 Common Barriers

Language can be a Lack of understanding

barrier

Family/Parent/
Clinical Lack of trust
Advocate
Perspective
Perspective

Wanting to partner
Time constraints
but not feeling that it
is welcomed
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 For Your Consideration
Evaluate Benefits Evaluate Barriers

• Gaining a more in-depth • HIPPA

perspective
• Support patient on their journey
• Improved patient outcomes
• More time for appointments,
charting, etc.
• Teaching the patient how to
assume responsibility
• Resources
• What will I do with a Parent Partner?
• Physician apprehension
– Liability
– Letting go
• Assuming what the Parent Partner can
handle
• Introducing non-medical ideas (eg, CAM)
• Changing culture of the office

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 Benefits for Both
Health Care Professional:
• Consumer Perspective
• Creative Ideas
• Gain cultural humility &
understanding
• Parent brings unique skill set
(eg, marketing director,
novelist, teacher, artist, etc.)
• Empowers families to invest in
practice in a new way
• Parent is a bridge to larger
community networks
Parent Partner:
• Creates positive change for all
children
• Provides networking
opportunities with other parents
• Lived experience is valued
• Collaboration with health care
professionals
• Learning new things/skills
• Being part of a team
Adapted with permission from: Family Engagement in
Quality Improvement, Jill Rinehart, MD, FAAP; Shelly
Waterman, VT Family Network 30
 Considerations for Both
Health Care Professionals:
• Do not always have the
answers
• Can find it challenging to hear
criticisms of the system,
however constructive
• Need to take the time to
reflect on what families have
to say
Parent Partners:
• Provide the “crossover” of
systems’ perspective (eg.
medical, educational, etc.)
• Bring the voice of the consumer
• Need to learn the health care
professional’s world, too
Adapted with permission from: Family Engagement in
Quality Improvement, Jill Rinehart, MD, FAAP; Shelly
Waterman, VT Family Network
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Tools & Strategies

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 Tools for Fostering FCC & Parent Partners
• Resource areas
• Advertisements/Newsletters
• Coffee hours & Resource nights
• Family/Team-developed care plans
• Community Liaison/Parent-to-parent groups
• Inclusion in staff meetings/as part of the team
• Inclusion in QI projects
• Focus groups
• Parent Advisory committee
• Family Councils
• Using the Promoting Healthy Development Survey
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 Engaging Parent Partners: Focus Groups

• Invite 8-10 parents to attend the focus group

• Provide overview of medical home initiative

• Parents begin by discussing the positive aspects of

their pediatric practice

• Give specific attention to areas within the practice to

determine how they function
– Scheduling, referral processing, telephone call backs,
on-call protocols, etc.
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 Resource Night

• Planned and coordinated by a core group

of parent partners in conjunction with the
PCP medical home team

• Usually held at the practice or local hall

• Can be specific to a diagnosis (eg, Down

Syndrome) or for any child with a chronic
condition
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Success Stories From Parent Partners

• Referral requests
• Visit types & resources
• Bulletin Board
• Care plans components

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Technology & Family-Centered Care
• Previsit screening
– Meaningful use (dollars)
– Residents/students in waiting area

• Electronic Health Records & patient

portals

• Appointment/referral requests

• Email/text

• Social Networking
– Bulletin Boards, Facebook, Twitter
– Snapchat, Instagram, Pinterest 37
Supporting Parent Partners & Reimbursement

A. Travel and parking

B. Supporting time
C. Grants
D. Practice support
E. Convenient meeting times
F. Provide food

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Challenges in Family-Centered Care

 Compassion Fatigue
 Strained relationships
 Team buy in
 Can I meet the expectations?
 Sustainability and continued engagement

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 Family Engagement at the Chapter Level
AAP’s FamilY Partnerships Network’s
Top Five Things a Chapter can do Right Now
1) Invite a parent/family organization rep to talk with chapter leadership/staff about
possible opportunities for involvement in chapter activities

2) Reach out to local Family-to-Family Health Information Center staff to discuss ways to
partner on family engagement initiatives and learn about resources

3) Collaborate with family organizations on specific policy and advocacy initiatives

4) Incorporate family organizations and family engagement activities into grant proposals

5) Invite a parent/family organization rep to contribute to chapter publications and/or

review materials developed by the chapter to ensure a family perspective is considered
and included
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Family Engagement at the Individual Level
• Discuss strategies and ideas to
deepen the partnership between
health care professionals and family

• Ask family/patient concerns

• Use a strength-based approach

• Resources:
– Previsit questionnaires
– Patient/parent portals
– Bright Futures Family Pocket Guide
 Identifying Strengths

• Identify parent strengths

• Give feedback to family
• If a change is needed,
use shared decision-
making

Source: Bright Futures Eliciting Parental

Strengths and Needs Tip Sheet
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 Strength-based Approach: Tips
 If you see a parent doing something great, point it out

 Instead of telling the parent they “should” do something, offer that

they “could” do something
 Provide positive feedback during the visit

 Ask the parents about their role as a parent, how they differ from
their own parents, what they like to do with their child

 Take an interest in the parents

 Recognize the strength of extended family and offer strategies to

assist

 Caution: when to focus on “how can I help you” more than

“strengths” or how “strong” a family is
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 Education in Quality Improvement for
Pediatric Practice (EQIPP)

 EQIPP Bright Futures, an online learning program, weaves

improvement principles and concepts with pediatric-specific clinical
content to improve health outcomes. It is designed to identify and
continuously close gaps in practice using practical tools.
 EQIPP Bright Futures courses are currently undergoing revision. It is
expected to re-launch within 6 – 12 months.
 EQIPP participants simultaneously earn CME credit and meet MOC
Program Part 4: Performance in Practice requirements. EQIPP is now
a member benefit.

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 Web Site Resources
brightfutures.aap.org
 Resources and Tip Sheets

 Resources for families, states and community

health programs

 Implementation strategies and stories from

practices, states, and communities that use
Bright Futures
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 Resources: Parent/Family
 healthychildren.org
 General information related to child health and/or more specific guidance on parenting issues
 Information on AAP policies, guidelines, publications, and other child health resources

 Brightfutures.aap.org
 Patient/Parent handouts in the Bright Futures Tool & Resource kit
 Implementation Tip Sheets

 Bright Futures Family Pocket Guide

 Developed by the National Family Voices Project IMPACT with input from Bright Futures
 Easy-to-use book designed to help families support health and wellness for their children at
every age (in English and Spanish)

 Healthy Child Care America

 Supports the needs of health professionals interested in promoting healthy and safe early
education and child care programs
 Resource library (for health care and early education & child care professionals)
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 Resources: Family Engagement
AHRQ Guide to Patient and Family
Engagement in Hospital Quality and Safety
AMCHP Family Engagement in Title V
Arnold P. Gold Foundation
Boston Children’s Hospital Care Coordination
Curriculum
Bright Futures Previsit Questionnaire
CDC Positive Parenting Tips
Family Voices Family-Centered Care Self-
Assessment Tool
The HALI Project
Institute for Patient and Family Centered Care
MCH Leadership Competencies
NCMHI Tools & Resources
NICHQ Family Engagement Guide
Office of Head Start Parent, Family, and
Community Engagement (PFCE) Framework
Patient & Family Leadership Resource
Compendium for Health Care
Reach Out and Read
Schwartz Center for Compassionate Healthcare
Strengthening Families Framework
Well Visit Planner
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 Changes in Practice

Participants can:

Define patient and family engagement

Identify and implement strategies for partnering

with patients and families at the practice level

Identify and implement strategies for partnering

with patients and families at the individual level

48
Questions & Answers

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 References

 American Academy of Pediatrics. Bright Futures Tool and Resource Kit [CD-
ROM]. Duncan PM, Shaw JS, Gottesman MM, Swanson J, Hagan JF, Pirretti
AE, eds. Elk Grove Village, IL: American Academy of Pediatrics; 2010.

 Hagan JF, Shaw JS, Duncan PM, eds. 2008. Bright Futures: Guidelines for
Health Supervision of Infants, Children and Adolescents, Third Edition. Elk
Grove Village, IL: American Academy of Pediatrics.

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 Contact Information
American Academy of Pediatrics
Bright Futures National Center
Jane Bassewitz, MA
Manager, Bright Futures National Center

Kathy Janies
Manager, Bright Futures Implementation

Phone
847-434-4326
E-mail
brightfutures@aap.org
Web site
brightfutures.aap.org
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