1. Building Our Future Together Through Family Navigation: A Pilot Program
Elizabeth Trenkamp, MT (ASCP), Stephanie Weber, PsyD, Jennifer Smith, PsyD-BCBA-D, Abbey Walter, MSW, LISW, Janet Seide, BS
Leadership Education in Neurodevelopmental and related Disabilities (LEND) program
The University of Cincinnati University Center of Excellence in Developmental Disabilities (UCEDD)
The Division of Developmental and Behavioral Pediatrics (DDBP)
Cincinnati Children’s Hospital Medical Center
Results To Date
20 referrals
Eight families enrolled
Increased number of referring providers from five to seven (systematically increasing capacity of Family Navigator and integrating this service into clinical programming of DDBP)
Background & Goals
Family Navigation:
Utilizes family members in the navigation role
Takes advantage of the unique bond that develops from having similar life experiences and challenges
Addresses the multitude of challenges facing families
Takes a holistic approach by building a bridge that ensures effective and open communication between families and providers
Activates families to move forward with accessing services and resources
Gives balance to the clinical side of evaluation and treatment
Provides mentorship for families to build their confidence, motivation, and sense of empowerment
Goals of Family Navigation:
Help families build upon their sense of confidence and competence
Increase overall quality of life for families
Examine the impact of caregiving on family members
Offer family-to-family support and guidance
Families identify their strengths and develop an action plan
Methods of Program Development
Preparation Phase:
Recruited Family Navigator (LEND graduate in Family discipline)
Conducted literature search and held interviews with other Family Navigation programs across the US
Obtained foundation funding to support Family Navigator stipend, supplies and trainings
Completed trainings to build skills of Family Navigator in interpersonal communication, reflective and empathic listening, Motivational Interviewing, professional boundaries, patient confidentiality, ethical decision making, documentation, health literacy, and mentoring/coaching
Observed a multitude of clinical appointments and conducted “mock appointment” role-plays with various parent-professionals
Obtained approval from Institutional Review Board for examining outcomes of program
Announced program launch to wider division
Implementation Phase:
Educated referring providers on making referrals to Family Navigation following family Information Sharing and Summary meeting (ISS)
Received referrals for families of children 6 years and under who were newly diagnosed with any diagnosis
Contacted and began enrolling families into navigation
Families complete pre navigation outcome measures:
1) Parent-Patient Activation Measure
2) Family Quality of Life Survey
3) Parenting Stress Index (Long form)
Examples of Goals in Family Action Plans:
Get established in school services and other needed services
Engaging in appropriate organized group activities
Narrow down services that are essential. Build a routine around services so we are more structured
Making sure we have the appropriate services and supports in the educational setting
To reach and become a member of the Autism community in Cincinnati
Conduct navigation with individual families for a duration of 12 months (+/- 6 hours navigation in person or by or phone)
Share Benefits and Expectations of Family Navigation sheet with families
Help families in developing an individualized plan of action by identifying families’ strengths and guiding development of action-oriented goals
Explore with families what the needed steps are to achieve their goal
Provide targeted resources to families
Answer families’ questions/concerns regarding DDBP services, community resources, insurance/financial resources, transportation, school and parental needs
Families complete post navigation outcome measures:
1) All pre-navigation measures
2) Satisfaction with Interpersonal Relationships with Navigator
Supervised by a DDBP Social Worker and Psychologist
Moving Forward
Continue to build the Family Navigation program into the continuum of care in DDBP
Increase the number of referring providers and extend the eligible age range
Disseminate research findings
Secure ongoing funding for program sustainability
Barriers
Obtaining access to electronic medical record (Epic) for documentation, correspondence with referring providers, and coordination of care
Obtaining employment status of Family Navigator as a part-time FTE
Building awareness of this service into a large division
Integrating Family Navigation into existing clinic processes
What families are saying about Family Navigation
“I don’t know that we would have taken advantage of all the resources without Family Navigation.”
“Without Family Navigation, we fear that we will never be able to get organized and move forward.”
“So helpful to have Family Navigation so we can know that we can do it in small steps.”
“Family Navigation is another outlet for parents so they are not in it alone.”
Acknowledgments
The Family Navigation Pilot Program in DDBP at Cincinnati Children’s Hospital Medical Center is supported through funding from the Jack H. Rubinstein Foundation for Developmental Disabilities as well as the Maternal Child Health Bureau (LEND #T73MC00032) and the Administration on Intellectual and Developmental Disabilities 90DD0696.