Navigators’ Perceptions of Their Work in Childhood Neurodisability: What They Do and What They Call It

Abstract

The application of ‘Patient Navigation’ to childhood neurodisability is relatively new, and it is therefore critical that conceptualizations of patient navigation reflect the unique needs and circumstances of this population. The current qualitative study engaged individuals (n = 174) who perform navigation-related work within childhood neurodisability in British Columbia, Canada. Participants’ survey responses elucidated a comprehensive conceptualization, including what ‘navigation’ aims to provide and facilitate, and overarching guiding principles. There was also great diversity in participants’ role titles. Our research identifies the broad set of navigation-related actions and principles that can be implemented in response to child and family circumstance.

Keywords:

• Neurodisapbility
• patient navigatfion
• family support
• qualitative methods
• children

Disclosure statement

The authors have no conflicts of interest to declare.

Notes

1 128 participants provided alternative terms to “navigation”; however, as some listed more than one alternative, the total adds up to greater than 128.

Additional information

Funding

This research was supported by the Kids Brain Health Network and Azrieli Foundation. The first and last authors receive support from the Sunny Hill Foundation for Children.