A Review of Family Navigation: An Exemplar for Children with Autism

Background: Significant disparities exist in access to diagnostic and treatment services for children with autism spectrum disorder (ASD), especially for low income, racial and ethnic minority families. Family Navigation (FN) is a promising intervention to address these disparities by reducing system and patient-specific barriers to accessing ASD diagnosis and treatment. FN is an evidence-based care management intervention delivered by a trained community health worker who assists families in overcoming barriers to accessing a defined set of services over a time-limited period. There is a growing evidence base for FN to accelerate the diagnosis of ASD and early intervention access. However, no published data exist on how best to deliver FN, which components are most critical (and for whom), and what strategies to employ for implementation (i.e., “core components”).

Objectives: To review existing FN work and describe the core components of FN for ASD.

Methods: The research teams from four large studies (total N of children = 550) of FN for ASD completed the Template for Intervention Description and Replication (TIDieR) checklist to outline intervention components including: physical materials, who provided services, how/where/when/how often service was provided, tailoring or modification, and assessment of intervention fidelity and implementation. A qualitative synthesis of these TIDier checklists was used to determine the core components.

Results: Ten components were identified: (1) intensive training to navigators on motivational interviewing, navigation intervention, problem solving approaches, and ASD diagnostic and treatment services; (2) ongoing supervision and case review; (3) shared language and cultural concordance between the navigator and the family; (4) individual (navigator to family) face-to-face, phone, and email encounters, which occur in family’s homes, clinic, or other community/service settings where the family requests support (e.g., Supplemental Security Income office); (5) identification of barriers to appropriate care (e.g., language, cultural beliefs, transportation, distrust/emotional barriers, medical system barriers, financial barriers); (6) creation of a family-specific action plan to improve access to care; (7) care coordination for the entire family and the provision of a necessary link to community-based resources; (8) emotional support throughout the entire process (i.e., from FN referral through access to ASD treatment up to 100 days); (9) checklist of key navigator tasks that are family-specific and vary in intensity based on each family’s needs (e.g., helping to schedule appointments); (10) ongoing, systematic fidelity monitoring (e.g., Family Navigators audiotape one randomly selected session for each client; audiotapes are then reviewed by the FN supervisor and used to provide feedback on FN delivery)

Conclusions: Family navigation in the context of childhood ASD is designed to reduce the time to an ASD diagnosis and access to treatment, and mitigate racial, ethnic, and socioeconomic disparities in service access. Through a qualitative synthesis of large-scale studies testing FN for ASD, we identified 10 core components of FN training and treatment delivery. We will discuss the importance of each component and implications for future implementation research and practice of FN for ASD.