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Slide 1
A DVICE FROM AN E XPERT P ARENT P ARTNER : E FFECTIVELY E
NGAGING P ARENTS IN Y OUR P RACTICE Janet DesGeorges
Slide 2
D ISCLOSURE I have no relevant financial relationships with the
manufacturers of any commercial products and/or provider of
commercial services discussed in this CME activity. I do not intend
to discuss an unapproved/investigative use of a commercial
product/device in this presentation.
Slide 3
M Y P ROFESSIONAL B ACKGROUND Credentials: M.O.M. (Mom, you
wouldn't have a job if it wasnt for me ); our family story Systemic
involvement for over 15 years (medical, educational, community)
Executive Director and Co-Founder, Hands & Voices (over 50
chapters in the U.S. and abroad) Author of peer-reviewed articles
in medical journals Certificate of Completion, MCH Public Health
Leadership Institute, University of North Carolina at Chapel
Hill
Slide 4
A B RIEF HISTORY OF OUR FAMILY S JOURNEY Sara was born in 1991
prior to universal newborn hearing screening Late I.D. at age two
with 2 year language delays (congenital, sensorineural bilateral
moderate-profound hearing loss); 37 professionals in our lives by
age 7 Successful, young deaf adult bi/modal communicator; senior in
college; getting ready for a semester abroad
Slide 5
G OALS OF THIS SESSION : Explain the value of the
parent-professional partnership on an individual patient's care
Describe the benefits for a practice and/or system to have a
network of family leaders that are meaningfully involved in the
practice Outline the common factors that lead to successful
parent-professional collaboration and best practices for achieving
and sustaining family-centeredness in the medical home A positive
attitude may not solve every problem but it makes solving any
problem a more pleasant experience. Grant Farley
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Knowing and utilizing parent stories are an essential element
in helping to create sustainable, quality systems that meet the
needs of the children and families we serve! T HE A RT OF S TORY
yes, but look at his audiogram There is no greater agony than
bearing an untold story inside you. Maya Angelou
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H OW DO TRAINED, MOTIVATED PARENTS GET INVOLVED ? copyright (c)
Hands & Voices 2012 Parent participation through advocacy In
the system Parent-to- Parent For each other Parent led, centered,
involved, directed For their own child
Slide 8
C LINICIAN P ARENT P ARTNERSHIP Google it About 3,050,000
results The Citizen Scientists ( Wired Magazine, 2001) And by the
way, don't go on the Internet. for their own child
Slide 9
B ALANCED P ARTNERSHIPS WITH P ROFESSIONALS Parents want
professionals to perceive them as equals in making decisions about
their child What Parents Have Told Us, Harrison and Roush,
1990-2000 Listen to us, respect us, be knowledgeable, be honest,
tell us everything. Connecting with Families: Making Early
Intervention Work, Marilyn Sass-Lehrer, Ph.D. Gallaudet University,
Washington, DC
Slide 10
A N E QUITABLE P ARTNERSHIP Emotional vulnerability by the
professional creating a balanced relationship Dont just do
something stand there and pay attention (Dean, 1991) Start where
the family is You are not the only answer help families connect to
other resources (parents, role models, community resources,
etc.)
Slide 11
A C LINICIAN S B EST F RIEND T HE P OWER OF THE P ARENT - TO -P
ARENT C ONNECTION Emotional support & credibility from others
who have been there A way to share information A safe place to
brainstorm and express feelings Sounding board for the choices you
are making Validates your own feelings Learn new ways to process
Discovering similar challenges in a community for one another
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P ARENT -P ROFESSIONAL P ARTNERSHIPS T OWARDS Q UALITY I
MPROVEMENT in the system
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I SAID S OMEBODY SHOULD DO SOMETHING ABOUT THAT. T HEN I
REALIZED I AM SOMEBODY. L ILY T OMLIN
Slide 14
P ROFESSIONALS AND P ARENTS : W ORKING T OGETHER Parents Have
the big picture view and crossover of systems perspective (ie,
medical and educational) Bring the voice of the consumer Need to
learn the professionals world, too Professionals Working with
parents as equal team members is often a new experience Challenging
to hear criticisms of system, however constructive Dont have all
the answers, sometimes there is no right answer Need to hear and
reflect on what parents have to say Learn the code of their
streets.
Slide 15
B ENEFITS FOR P ROFESSIONAL T EAM M EMBERS Improves the
planning process Helps you carry out the mission of the program
Increases your knowledge and skills Helps you do a better job
Brings fresh perspectives to problems Provides an ally to advocate
for better services for children and families Increases your
empathy for and understanding of families Brings about better
consumer satisfaction because there is a team effort in providing
what the child and family need
Slide 16
B ENEFITS FOR F AMILY L EADERS Improves services for your
children, as well as for others Provides an opportunity to bring
about meaningful change Increases opportunities for you to share
information with other parents Feels good to make a contribution
Satisfying to give back to the system Provides opportunities to
network with other consumers and providers Expands your knowledge
and skills Source: Role Development of Utah Family Voices Health
Information Family Health Partners
Slide 17
D EBUNKING THE M YTHS Parents from hell: the angry parent
Relegated roles (ie, the cookie mom) Parents can only represent
their own experience Parents dont understand systems Parents wont
be able to step out of their own bias If parents are paid by the
system, they cant represent true parent perspective
Slide 18
D EFINING I NVOLVEMENT -Filling out a satisfaction survey
-Members of task forces -Advisory board members -Participants in
focus groups -Providing testimony at hearings -Paid program staff
-Paid program or policy consultants
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The Practical How To
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F ACTORS L EADING TO S UCCESSFUL C OLLABORATION Identifying
family leaders who have some prerequisite level of a skill set to
participate Skill set could include: Ability to share insights and
information about their experiences in ways that others can learn
from See beyond their own personal experiences and represent the
needs of other families Families with other communication modes,
special needs, medical/cultural viewpoints Respect the perspectives
of others Speak comfortably in a group with candor Work in
partnership with others
Slide 21
U TILIZING P ARENTS O WN S KILL S ETS Leadership or visionary
level Vision, risk, influence, value Managerial level Communicate,
coordinate, translate Task level Professional, technical, clerical,
support Citation: 2002 CO Nonprofit Leadership and Management
Program
Slide 22
A N E XAMPLE : P ARENT F ACULTY P OSITION AT NICHQ Planning
Involvement at the beginning of each project Guiding the
development of Collaborative content from the family perspective
Faculty level Role equal to that of other faculty Asked to
contribute beyond parent stuff Teams T.A. in ensuring their parents
are involved Present at learning collaboratives Support
parent-driven initiatives Parent involvement support Spend time
with parents as a group at learning sessions Create and share tools
for meaningful involvement
Slide 23
T HINGS THAT WORK : RECOMMENDED PRACTICES BASED ON PAST
EXPERIENCES Establish scope of involvement for family leaders
Family leaders will understand what will be expected of them
Practice team members will understand how to utilize and
collaborate with family leaders. Create opportunities for family
leaders to convene at face-to-face meetings and through phone
meetings periodically to communicate with and learn from other
teams family leaders Ensure good communication from the team that
keeps the parent plugged in
Slide 24
I think what really helped me was how our state team leader
e-mailed weekly and the day before to remind us of the team calls
that we would have, and also would remind us of the QI update
calls. That was very helpful.
Slide 25
PDSA CYCLE Colorado Pre-work: Plan: Determine if PCPs have
results of hearing screen in charts. Predict they do Do: Chart
review of 10 charts from 3 PCPS that agreed to participate Study: 1
PCP had all 10 results, 2 PCPs had none Surprising result Inpatient
and outpatient EMRs do not communicate Act: Do small tests of
change using additional PDSA cycles: identify PCP prior to hospital
discharge; fax results to PCP; provide results to family in writing
Promote statewide data integration efforts with immunization
registry; develop a strategic plan for data management and case
tracking EXAMPLE FROM NICHQ PROJECT: I MPROVING F OLLOW -U P AFTER
N EWBORN H EARING S CREENING BY A PPLYING Q UALITY I MPROVEMENT S
TRATEGIES TO THE H EALTH C ARE S YSTEM
Slide 26
Example: A PDSA cycle may track if audiologists are giving
information to the medical home (ie, fax back forms) EndUser
Surveys: Ask parents, Did the physician discuss your childs
screening results with you? Think about it from your point of view
as a parent How will the outcomes of this collaborative be utilized
to improve your system? (Parents: Ask yourself the internal so
what? question when talking about PDSAs.)
Slide 27
K EEP ASKING YOURSELF... How will the outcomes of this
collaborative be utilized to improve your system? (Parents: Ask
yourself the internal so what? question when talking about PDSAs.)
Where can you take the information gleaned from this project to
reflect on and create change based on the results? Parent support
organizations Other projects you are involved in Grant writing
Partner agencies YES we did! Quality Improvement
Slide 28
I F YOU DON T HAVE ENOUGH PARENTS ON YOUR T EAM YET... T IPS
FOR RECRUITING PATIENTS AND FAMILIES Ask families who are already
involved if they have a friend who might be interested in
participating Ask providers to identify patients and families
Contact family networks, support groups, or advocacy organizations
Place a story in community newspapers Use key informants people in
the community who are knowledgeable about families' needs and are a
link to other patient and family groups Ask community and church
leaders Send notices to social and cultural clubs in the community
Place posters in community locations at large employers, churches,
housing projects, clinics, gas stations, social service agencies,
and kindergarten registration Adapted from Jeppson, E. &
Thomas, J. (1994). Essential Allies: Families as Advisors.
Institute for Family-Centered Care 7900 WISCONSIN AVE, SUITE 405,
BETHESDA, MD 20814, Phone: 301-652-0281, Fax: 301-652-0186
www.familycenteredcare.org
Slide 29
The Attitudinal How To
Slide 30
P ARTNERSHIP : A SPECTRUM RATHER THAN A SINGLE DEFINITION
CoexistenceNetworkingCooperationCollaborationPartnership Source:
Potential of Partnership, Craig & Courtney, 2004
http://www.waitakehttpre.govt.nz/ourpar/pdf/potentialof
partnership.pdf
Slide 31
C OLLABORATION ON C OMPLEX I SSUES S OURCE : POTENTIAL OF
PARTNERSHIP, C RAIG & C OURTNEY 2004 Co-Existence You know
about each other, but dont need to come together; no dependency or
need to collaborate Networking Information sharing is the basis;
informal discussions; no formal collective agreement on visions or
tasks; does not involve shared decision making; establishing and
maintaining relationships; knowing and understanding whos doing
what Cooperation No fixed term or long term relationship implied;
acknowledgement of common issues, interests, and agendas; may
involve helping another organization to achieve its project or
task; no ongoing or formal commitment to each other
Slide 32
C OLLABORATION ON C OMPLEX I SSUES ( CONTINUED ) S OURCE :
POTENTIAL OF PARTNERSHIP, C RAIG & C OURTNEY 2004 Collaboration
Involves trust; based on negotiated and agreed actions; having the
same base values is not imperative, but must have an agreed set of
principles for working together; shared decision making; means
giving up some things (like power and control) and compromising;
provides an opportunity to add value to others as well as yourself
Partnership Involves emotional and spiritual awareness of each
other that is, involves hearts, minds, passion; works from an
agreed base of shared values (eg, trust, honesty); sharing risks
and rewards, resources, accountability, visions and ideas, decision
making; systems and mechanisms are developed to support the
partnership (eg, structures, contracts, principles, visions, plans,
conflict resolution); shared power but not a 50/50 notion of
equality about the way things are done
Slide 33
M UTUAL M ENTORING Parent and physician take a leap Shirley
Russ MD, MPH Cedars-Sinai Medical Center Associate Clinical
Professor of Pediatrics Janet DesGeorges Parent Advocate We
deliberately chose to explore the concept of mutual mentoring The
relationship developed phone calls, dinners, long conversations,
collaborative presentations, and more
Slide 34
D EFINITION OF M UTUAL M ENTORING Mentoring has traditionally
been defined as a top- down, one-on-one relationship in which an
experienced expert guides and supports the protg In UNHS, who is
the expert and who is the protg? Mutual Mentoring distinguishes
itself from the traditional model of top-down mentoring in that the
relationship is a non-hierarchical, collaborative exchange in which
no single person is required or expected to possess all the
expertise and information We need each other!
Slide 35
T HE M EETING OF THE M INDS We both (parents and professionals)
need to understand each others perspectives, life experiences, and
expertise Inviting parents into systems development creates
opportunity for the building of relationship, trust, and
communication Seeking and walking in a partnership for quality
improvement can change the world (or at least your practice)
Slide 36
Disturb the Peace Sustain Tension Contain Anxiety Provide
Leadership Janet can be reached at [email protected]
303-492-6283