Wisconsin LEND Program supported by the Health Resources and Services Administration (HRSA) of the U.S.

Department of Health and Human Services (HHS) under grant number 2 T73MC00044.

A Preliminary Evaluation of the Family-Centered Autism Navigation

(Family CAN) Interview
Kris Kris Barnekow, LaKesha Pettigrew, Kristin Lee, Megan McWhorter, Huong Pham, Molly Poeske, & Natalie Raasch

Wisconsin Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Program

Introduction Results
re incomplete.

Autism spectrum disorder (ASD) is a developmental disorder which causes Participant Demographics Survey responses
difficulties in social communication and behavior (CDC, 2016). The participants included two Family Navigators, seven parents of children Generally, participants thought that the survey questions were clearly
with ASD, and five parents of children with ASD who also served as informal stated; however, they suggested that several questions be reworded.
Currently, 1 in 68 children are diagnosed with ASD in the United States. In Family Navigators (N=14). Eleven surveys were completed and three Additionally, some participants noted that they thought several
Wisconsin, 1 in 92 children are diagnosed with ASD (Christensen et al., surveys were incomplete. questions may be difficult to understand without further background
2016). knowledge (e.g., educational determination versus medical
Gender 14 Females; 0 Males diagnoses).
Despite the high prevalence of children diagnosed with ASD, families find All areas covered by the Family CAN Interview were considered
navigation of systems, location of resources and supports difficult, Race 14 Caucasian; 1 Asian; 1 African American
important. However, participants stressed that it may be important to
confusing, and frustrating. In particular, children with ASD require prioritize family needs and identify the most critical areas to develop
specialized support from multiple systems of care (e.g., school, insurance, Age Range 35-60 years old the shared navigation plan.
medical, and community supports). Thus, caregivers of children diagnosed
Education Range 12-18 (High school to Masters Degree) Participants mentioned parents may feel uncomfortable asking
with ASD could benefit from assistance with navigation of multiple systems
of care and resource location (Kubicek & Kipke, 2016). follow-up questions if they do not understand what is being asked.
Additionally, parents may not know to ask for further clarification
Family navigation is the process that enables families to traverse complex because they dont know what they dont know.
systems of care. Family navigation is comprised of research-based This figure illustrates the topics that are depicted in the Family CAN Participants noted that some Family CAN questions can be sensitive
processes, models, and tools that support and empower families to Interview. in nature and may make parents feel emotional (e.g., how well can
navigate systems of care. Family Navigators are professionals that you explain your childs diagnoses to others).
support the family navigation process (Kubicek & Kipke, 2016). Follow-up interview
To our knowledge, there is no systematic way to develop a shared Five follow-up interviews were conducted with parents of children
navigation plan and measure if families are becoming more successful at with ASD. All family members stated that they could see themselves
navigating the myriad of systems of care.re is no structured way to participating in developing a shared navigation plan using the Family
develop a shared navigation plan and measure if family navigation CAN Interview.
Project
servicesGoals
are successful or if families are becoming more proficient at Advantages of the Family CAN Interview included: 1) the interview
navigating the myriad of systems of care. covers a broad set of topics; 2) it can help address what families are
To evaluate and determine the clarity of the questions on the Family-
most concerned about, and 3) the interview can be used flexibly.
Centered Autism Navigation (Family CAN) Interview.
Disadvantages of the Family Can Interview included: 1) families may
To examine feedback from Family Navigators and parents of children not be able to gain access to suggested resources; 2) the interview
with ASD about the Family CAN Interview in order to enhance the may not be as useful for older children, and 3) there was no mention
questions and make the interview guide more useful. of assistance for ASD co-morbidities, which are common.

Methods Limitations
Our sample size was small (N=10). All of our participants were female
The Family CAN Interview was developed from 41 customer discovery and the majority were Caucasian. Only two of the participants were
interviews funded through the National Science Foundation I-Corps professional Family Navigators (i.e., they were paid for their work).
Program.
Future Directions
Family Navigators and parents of children with ASD were recruited to In the future, we plan to find additional Family Navigators and parents
The figure contains a circle in the center labeled as Family CAN.
evaluate the Family CAN Interview. The participants were asked to of children with ASD who are from diverse backgrounds to evaluate
Surrounding the center circle are smaller circles that include the content
complete an online survey to provide feedback about the questions on the Family CAN Interview.
categories found within the Family CAN. The smaller circles that surround
the Family CAN Interview. All participants were invited to take part in an
the center circle resemble the numbers found on a clock. Beginning at the Based on feedback from Family Navigators and parents of children
additional follow-up interview after they completed the online survey.
twelve oclock position and moving around the larger circle are the with ASD, we plan to make changes to the Family CAN Interview in
Participants were included if they spoke English and were either the
categories of: health literacy, community resources, school services, order for it to best serve the needs of families.
parent of a child with ASD or a Family Navigator for families of children
therapy coverage, family dynamics, social interactions, medical
with ASD. Overall, it is our hope to create an interview guide that effectively
management, child safety, advocacy help.
supports families as they navigate the challenges following an ASD
Literature cited diagnosis.
CDC (2016). Retrieved from www.cdc.gov/ncbddd/developmentaldisabilities/index.html on 9/21/2016.

Christensen DL, Baio J, Braun KV, et al. Prevalence and Characteristics of Autism Spectrum Disorder Among Children
Aged 8 Years Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2012. MMWR Acknowledgments For further information:
Surveill Summ 2016;65(No. SS-3)(No. SS-3):123. DOI: dx.doi.org/10.15585/mmwr.ss6503a1.
This project has been supported by the National Science Foundation Milwaukee I-Corps Program
Kubicek, K., & Kipke, M. (2016). The landscape of family navigation services within Autism Speaks-Autism Treatment and the Wisconsin LEND Program supported by the Health Resources and Services Administration Please contact Kris Barnekow at krisb@uwm.edu
Network. Retrieved from www.youtube.com/watch?v=7ZLXO__dDVE on 4/26/2016. (HRSA) of the U. S. Department of Health and Human Services (HHS) under grant #2T73MC0044.