The development and utility of the Family-Centered Autism Navigation (Family CAN) semi-structured interview
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Kris Pizur-Barnekow, PhD, OTR/L, IMH-E and Amy C. Lang, MS
University of Wisconsin-Milwaukee, Department of Occupational Science and Technology & Department of Psychology
Background: The Family CAN Project
• Autism spectrum disorder (ASD) is a developmental disorder, which
causes difficulties in social communication and behavior (CDC, 2016).
• Currently, 1 in 59 children are diagnosed with ASD in the United States.
In Wisconsin, 1 in 92 children are diagnosed with ASD (Christensen et
al., 2016).
• Despite the high prevalence of children diagnosed with ASD, navigating
all of the systems, resources, and supports available for families of
children with ASD can be difficult, confusing, and frustrating.
• Family Navigation encompasses the structure and resources that enable
families to navigate complex systems. Family Navigation is comprised of
research-based processes, models, and tools that support families
navigating systems of care (Feinberg et al., 2016). Professionals that do
Family Navigation are called Family Navigators.
• The Family-Centered Autism Navigation (Family CAN) is a
comprehensive semi-structured interview designed for FNs to use as a
guide while working with families of children with ASD (see Figure 1).
The purpose of the Family CAN is to create a family-centered, prioritized
plan of action that aims to support families as they navigate the
challenges that arise following an ASD diagnosis for their child.
• The purpose of the current project was to describe the development
and utility testing of the Family CAN among community FNs familiar in
working with families of children with ASD and parents of children with
ASD.
Methods
● Original questions of the Family CAN semi-structured interview were
developed using Discovery Interviews and Lean Launch methodology
(Blank, 2013) through funding by the National Science Foundation
I-Corps Program.
● Thirteen respondents (9 parents, 1 FN, and 3 parents/FNs) completed a
Qualtrics survey to provide feedback on the drafted interview
questions. They specifically were asked to give feedback regarding the
clarity, importance, and usefulness of the interview questions.
● Narrative feedback was reviewed and coded by a team of researchers
(see Table 1 and 2). Then, interview questions were revised based upon
the respondents’ comments.
● The Family CAN semi-structured interview was utilized during family
navigation sessions by two FNs and four family members as part of the
HRSA-funded Wisconsin Care Integration Initiative. Through the quality
improvement process of Plan, Do, Study, Act, the FNs indicated that
they would adopt the Family CAN as part of their practice.
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Figure 1. First page of the Family CAN semi-structured interview.
Clear - the participant explicitly states that the
question is clear
Unclear - the participant explicitly states that
the question is unclear
Answered Question - the participant answered
the question on the survey
Other - unclear what participant’s comment is
referring to
Experience - the participant provides an
example from their own personal experience
Change - the participant provides specific
recommendations for changes in wording of the
item
Table 1. Operational definitions for coding
participant responses.
Corresponding Author:
Kris Pizur-Barnekow, krisb@uwm.edu
Results
Stage One: Discovery Interviews
• In Stage One, feedback indicated that the Family CAN had potential for
assisting FNs to systematically identify challenges that caregivers
experience upon learning of their child’s ASD diagnosis.
Stage Two: Qualtrics Survey Results
• In Stage Two, question stems were revised based on feedback about
clarity, importance, and how the question made the respondents feel.
•
• The majority of the respondents felt the questions were clear and
important to ask.
•
• Respondents generally did not like questions about performance as
they felt they were intimidating. These questions were changed to ask
them to rate their satisfaction with understanding or task engagement.
Stage Three: Quality Improvement Process
• In Stage Three, the quality improvement process revealed that FNs
found the updated interview helpful when serving parents of children
who were newly diagnosed with ASD.
• Face-to-face and telephone administration were viewed as useful.
• Additionally, FNs found that interview could be administered in a single
session and when split into multiple sessions. Administration format
depended upon family communication style and detail of responses.
Conclusions
● Family Navigation is an important process that links families to services
and supports after their child has been diagnosed with ASD.
● The current study showed that the Family CAN semi-structured
interview is a promising systematic way of helping families of children
with ASD access services.
● Future research is needed to determine if the Family CAN
semi-structured interview can improve parental self-efficacy.
References
1. Centers for Disease Control and Prevention (CDC; 2016). Autism Spectrum Disorder (ASD). Retrieved from https://www.cdc.gov/
ncbddd/autism/index.html
2. Christensen, D. L., Baio, J., Braun, K. V., et al (2016). Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged
8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2012. MMWR Surveillance Summary,
65(No. SS-3), 1–23.
doi: http://dx.doi.org/10.15585/mmwr.ss6503a1
3. Feinberg, E., Abufhele, M., Sandler, J., Augustyn, M., Cabral, H., Chen, N.,......Silverstein, M. (2016). Reducing disparities in timely autism
diagnosis through family navigation: Results from a randomized pilot trial. Psychiatric Services, 67, 912-915.
4. Blank, S. (2013). Why Lean Start-up changes everything. Harvard Business Review. Retrieved from: https://hbr.org/2013/05/why-the-
lean-start-up-changes-everything
Table 2. Examples of coding of participant responses.