A Mixed Methods Approach to Describing Family Navigation As a Service Model within the Autism Speaks Autism Treatment Network

Thursday, May 12, 2016: 5:30 PM-7:00 PM
Hall A (Baltimore Convention Center)
K. Kubicek1, D. S. Murray2, K. Kuhlthau3, D. L. Coury4, D. Zand5 and M. D. Kipke1, (1)Children's Hospital Los Angeles, Los Angeles, CA, (2)Autism Speaks, Boston, MA, (3)General Academic Pediatrics, Massachusetts General Hospital, Newburyport, MA, (4)Nationwide Children's Hospital, Columbus, OH, (5)Saint Louis University, St Louis, MO

 Family navigation (FN), is an effective service model used across medical specialties, to assist families in accessing the clinical and support services for pediatric patients as well as relevant family members.

In 2014, the Autism Speaks Autism Treatment Network (ATN) required funded sites to integrate FN services into their clinic sites.  Given the variation in services across the network and the limited research in the use, effectiveness and scope of FN services in ASD, the ATN initiated a study to better understand the current implementation of FN across the Network. 

Objectives:   1) Develop an operational definition of FN for the network, 2) Describe the common service models of FN within the ATN; and 3) Identify potential best practices and appropriate outcome measures to evaluate the effectiveness of a FN model for children with autism spectrum disorders.

Methods:  The ATN convened a workgroup comprised of parents and professionals to develop the appropriate research design. A mixed-methods approach was determined to be the most appropriate to capture both breadth and depth of the FN service models across the currently funded 14 ATN sites.  This included: a survey of the primary family navigator at each site (N=13); three focus groups with family navigators (N=26); a survey of the site principal investigators at each site (N=12) and two focus groups with parents (N=12).  Data were triangulated to fully describe the FN model across the ATN.

Results:  We identified a number of similarities and differences across sites.  Family navigators spend most of their time providing referrals for community services (100%), educating parents on available options and the service system (92%) and helping to empower families (62%).  They felt that coaching parents to be effective advocates is one of their most important responsibilities. Social workers or similar professional staff are used as family navigators at most sites.  Most sites agreed that a parent or similar paraprofessional offers different insights and empathy for family members; however given that some referrals must be made by a licensed or certified individual, a hybrid model was identified as being the most promising.  Navigators often experience challenges meeting the needs of diverse families including linguistic needs and understanding cultural norms. Navigating school systems and IEPs are among the most common needs of parents followed by respite care, access to services and education. Few sites are currently tracking outcomes related to FN.

Conclusions:  Respondents agreed that FN is an important and valuable service for families. Next steps include identifying appropriate outcome measures (parental stress, activation, satisfaction, impact on cost, access) and service delivery strategies (e.g., referrals to FN, staffing, education) through a new prospective study.  This will assist in identifying core components of FN best practices that can be shared across the Network.