Exploring the terminology and descriptions of services that connect children with neurodisability and their families to needed support in the community: a scoping review protocol.

Abstract

This scoping review aims to fill a gap in knowledge on terminology and descriptions of services that connect children with neurodisability and their families to needed support in the community. Children with neurodisability represent a significant population with a demonstrated need for coordinated support. Patient navigation is a concept that was founded on the principle of coordinating care for patients based on individual needs. Despite the history of patient navigation, a definition for the concept itself is lacking. Moreover, children with neurodisability and their families are not often the target population of such initiatives. It is not known whether existing terminology and descriptions encompass the particular needs of children with neurodisability and their families. This review will examine published, peer-reviewed articles related to navigation-type resources, support, and services within the community as intended for children under the age of 18 years with neurodisability, and their families. All eligible studies pertaining to this context will be examined. A preliminary search was completed to find initial search terms, upon which a full search strategy was developed. Search results yielded from PubMed (NCBI), MEDLINE (Ovid), and CINAHL (EBSCO) were screened to ensure articles were peer-reviewed, published in English from 1990 onward, and relevant to both children with neurodisability/their families and navigation-related resources. A full-text review of relevant articles will be conducted and data extracted using the included extraction tool. Extracted terminology and concepts will be analyzed using a modified grounded theory approach, which will inform a working definition of navigational services and related terms. Open Science Framework: https://osf.io/cbvy9.