a dvice from an e xpert p arent p artner : e ffectively e ngaging p arents in y our p ractice janet...

A DVICE FROM AN E XPERT P ARENT P ARTNER : E FFECTIVELY E NGAGING P ARENTS IN Y OUR P RACTICE Janet DesGeorges

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.

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

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

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

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

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

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

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

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.)

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

P ARENT -P ROFESSIONAL P ARTNERSHIPS T OWARDS Q UALITY I MPROVEMENT in the system

I SAID S OMEBODY SHOULD DO SOMETHING ABOUT THAT. T HEN I REALIZED I AM SOMEBODY. L ILY T OMLIN

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.

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

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

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

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

The Practical How To

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

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

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

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

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.

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

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.)

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

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

The Attitudinal How To

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

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

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

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

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!

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)

Disturb the Peace Sustain Tension Contain Anxiety Provide Leadership Janet can be reached at [email protected] 303-492-6283

a dvice from an e xpert p arent p artner : e ffectively e ngaging p arents in y our p ractice janet...

Documents

child slide

dc slide

p rofessionals parents

e xpert p arent p artner

system parent

parent participation

chapel hill slide

parent stories