Families’ Experiences With Family Navigation Services in the Autism Treatment Network
abstract
BACKGROUND AND OBJECTIVES: Families of children with autism spectrum disorder (ASD) often experience challenges navigating multiple systems to access services. Family navigation (FN)
is a model to provide information and support to access appropriate services. Few studies
have been used to examine FN’s effectiveness for families of children with ASD. This study
used mixed methods to (1) characterize FN services received by a sample of families in the
Autism Treatment Network; (2) examine change in parent-reported activation, family
functioning, and caregiver strain; and (3) explore families’ experiences with FN services.
METHODS: Family characteristics and parent outcomes including parent activation, family
functioning, and caregiver strain were collected from 260 parents in the Autism Treatment
Network. Descriptive statistics and linear mixed models were used for aims 1 and 2. A
subsample of 27 families were interviewed about their experiences with FN services to
address aim 3.
RESULTS: Quantitative results for aims 1 and 2 revealed variability in FN services and
improvement in parent activation and caregiver strain. Qualitative results revealed variability
in family experiences on the basis of FN implementation differences (ie, how families were
introduced to FN, service type, intensity, and timing) and whether they perceived improved
skills and access to resources.
CONCLUSIONS: Findings suggest FN adaptations occur across different health care delivery
systems and may result in highly variable initial outcomes and family experiences. Timing of
FN services and case management receipt may contribute to this variability for families of
children with ASD