Terminology and descriptions of navigation and related practices for children with neurodisability and their families: a scoping review

BACKGROUND: Children with neurodisability (ND) represent a significant population with a demonstrated need for coordinated support. Patient navigation has a primary focus on: facilitating access to and connection amongst fragmented systems; as well as the provision of educational and emotional support. Given the distinct needs of children with ND and their families, programs built upon such core concepts could be of great benefit. The diversity of terminology encompassing navigation-related concepts and activities (e.g., care coordination, case management, family support), however, presents challenges to both practice and research. This scoping review examined the terminology and descriptions provided within published articles on navigation-type models for children with ND and their families. METHODS: The scoping review was conducted according to the Joanna Briggs Institute methodology. A preliminary search was completed on PubMed (NCBI), MEDLINE (Ovid) and CINAHL (EBSCO) to identify initial search terms, upon which a full search strategy was developed and executed in MEDLINE (Ovid) and CINAHL (EBSCO). After screening records according to our inclusion and exclusion criteria, a full-text review of relevant articles was conducted and data extracted using a researcher-developed tool. Under close supervision by the research team, study selection was primarily performed by one author. RESULTS: Of the 2597 papers identified, 33 were included in the final review. From the included papers, a total of 49 terms were extracted, 20 of which were unique. Across the diversity of terminology observed, articles provided detailed and rich descriptions characterized by four central domains, namely: (i) what navigation-related resources, supports and services aim to facilitate and (ii) provide; (iii) descriptions of their intended outcomes; as well as (iv) guiding principles. CONCLUSIONS: This scoping review addresses a gap in our knowledge related to the specification of patient navigation and related supports as applied to the specific context of children with ND and their families. Given the particular needs of this population, we propose an empirically-informed integrative model that synthesizes the findings from this scoping review. We suggest that this framework can be used as a guide to the mindful characterization of how supports aiming to connect children and families to needed service are termed and described within future research and in practice. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12913-022-07617-y.