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Development of the Family-centered Autism Navigation (Family CAN) measure

Briefly describe the activity and its purpose.

The Wisconsin LEND: Milwaukee Link program is a satellite program of the Madison-based LEND program that is offered at the University of Wisconsin-Milwaukee. As an extension of the Wisconsin LEND program, Milwaukee Link trainees have the opportunity to engage in leadership training focused on enhancement of service delivery for children with autism spectrum disorder (ASD) and other developmental disabilities with ethnic and/or economic diversity. Research experiences are an integral part of a trainee's leadership development.

The Family CAN is a semi-structured interview guide designed for use by family navigators or care coordinators who serve caregivers that recently learned of their child's autism diagnosis. The goals of the Family CAN Interview are to: 1) identify family and child strengths; 2) identify family/caregiver concerns regarding navigation of services and systems following their child's diagnosis of autism; 3) measure change in caregiver knowledge and skill as it relates to understanding, remembering, and evaluating information they receive; and 4) assist with development of a shared navigation plan.

What are the expected learning outcomes for trainees?

The learning outcomes for the trainees were to participate in data collection and analysis that supported the development process. Trainees learned about preparing the findings for dissemination through poster presentations and publication development.

Briefly describe the positive impacts this activity has had on trainees.

Trainees found the research experience helpful in advancing their knowledge of measurement development, qualitative data coding and interpreting results for dissemination through the lens of an interprofessional team.

Briefly describe any lessons learned or challenges associated with implementing this activity.

A significant lesson learned through this research study was about parental experiences with the diagnostic process. When collecting data, we learned that the diagnostic process may be a relief for some families and a source of trauma and negative emotions for other families. When family navigators utilize the Family CAN interview and approach the process in a relationship-based, family-centered manner while recognizing the unique perspectives and strengths of each family, development of a shared navigation plan may be optimized.

 

Contact

Kris Barnekow, PhD., OTR/L, IMH-E®
[email protected]

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