In The Politics of Autism, I discuss the difficulties facing families of newly-diagnosed children.
From the report:
Family navigators (FNs) are professionals with lived experience of having a child with ASD or special healthcare needs who engage families to enhance access to early identification and intervention services. Emerging research describes important components of family navigation (Feinberg et al., 2016) and shows FNs increase service initiation and ongoing engagement (Feinberg et al., 2016). However, research on the development of family navigation interventions primarily focuses on FN training with less attention paid to the protocols and products used by FNs to facilitate or enhance the family navigation process.
Feinberg, E., Abufhele, M., Sandler, J., Augustyn, M., Cabral, H., Chen, N., Linhart, Y. D., Levesque, Z. C., Aebi, M., & Silverstein, M. (2016). Reducing disparities in timely autism diagnosis through family navigation: Results from a randomized pilot trial. Psychiatric Services, 67(8), 912– 915. https://doi.org/10.1176/appi.ps.201500162
The lay abstract:
When a parent learns of their child’s autism diagnosis, they may be overwhelmed, confused, and frustrated. Family navigation services are designed to improve access to care. While these services are a promising intervention to enhance well-being and developmental outcomes, there are limited tools that can systematically facilitate the development of a shared navigation plan that prioritizes the concerns of the family. The Family-Centered Autism Navigation semi-structured interview guide is designed for family navigators to triage and prioritize caregiver’s needs to coordinate and navigate systems of care after learning of their child’s autism spectrum disorder diagnosis. The goals of the Family-Centered Autism Navigation 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, ability and skill as it relates to understanding, remembering, and evaluating information they receive; and (4) assist with the development of a shared navigation plan. When using the Family-Centered Autism Navigation guide, family navigators and caregivers co-create a family-centered, prioritized action plan that supports and prepares caregivers as they navigate systems of care. This short report describes the development process of the Family-Centered Autism Navigation semi-structured interview guide. We utilized brief interviews (n = 42), expert feedback (n = 13), and quality improvement strategies (n = 2 family navigators) to develop the questions and determine the usability of the Family-Centered Autism Navigation interview in practice.
