Objectives: There has been extensive focus on navigational work in British Columbia (BC) by individuals providing support to families in which a child has a neurodevelopmental disability (NDD). We have found that this work of navigation is referred to by many terms (e.g., Family Support, Case Management, Facilitation, Navigation, etc.). This variation led us to elicit with precision, from published literature and stakeholders in the province, what they key elements of this navigational work are. The key elements turned out to be: providing (advocacy, emotional support, education) and facilitating (access, service engagement, peer connections). Our work further identified an important set of guiding principles needed to underpin family support-navigational work. These principles are described below under ‘Actions.’ In review, these notions emerged in reflecting what the term ‘navigation’ seems to imply conceptually, and how it should be designed in practice. Within this variation, a common focus has emerged; namely, the aim of helping families by connecting them to the services and supports they need. We began to ask the question, ‘what if those working in this area were connected as a network of navigators?’ We are committed to the development of a resource for them to advance knowledge individually and collectively. Our work has also sought to: (1) raise public, professional and policy-maker awareness of the “navigational”-type work and its importance, and (2) to increase connectedness, collaboration, and information-sharing among wall involved in this work.
Actions: We created a dedicated time/space (through Zoom mostly) to network, where navigators could have a forum to engage with and support one other. We have sought to advance a ‘Community of Practice’, drawn from a Summit (see below), which reflected the commitment of time and resources. Terms of reference, a governance plan, and a model were created, with continued conversations underway.
Patient and family navigators’ guiding principles were taken into account: person-centered planning, build on family strengths, safety and harm reduction, cultural safety, long-term relationship, and being trauma-informed. These are the guiding principles which undergird the two key threads that comprise navigational work (providing and facilitating). There are multiple partners in our work, central to which has been the BC Navigation Project’s Provincial Advisory Group (PAG), which comprises multiple partners.
Outcomes: Engagement in this initiative across the province has continued. That being said, there is room for a multi-level approach where the scope is hoped to be broadened to something more interprovincial and even national, and in which sustainability for the initiative is ensured.
We hosted a Summit (BC Summit on Navigation for Children and Youth with Neurodevelopmental Differences, Disabilities, and Special Needs) in January of 2021 which brought together over 120 individuals including family advocates, practitioners, administrators, and researchers. A BC Navigational ‘Regroup’ was subsequently facilitated in September, 2021. Attendees learned from each other’s lived experiences of navigating the BC service system. They participated in engagement opportunities to foster the development of a future community of navigational and related family support services in BC. Based on a survey following the event, respondents reported that they appreciated gaining a better understanding of the challenges/complexities faced by BC families as they navigate service and support systems. They also reported gains in grasping the depth and variation of the term “navigation,” and learning about the range of scopes of service by various service providers across BC. They very much valued the opportunity to bring this kind of work ‘out of the shadows’ within health and social care, and to learn from each other.
“This was truly one of the best conference/summit I’ve been too. Technology actually was a benefit in this sense with the breakout rooms and using of the Mentimeter and Miro. Being able to pop out and around to other rooms at the end was in many ways, way more doable then if we were all in a room and getting up and moving. Loved the whole summit, connecting with so many different individuals and organizations. Was the best I’ve been to in a long time, and the whole event was so seamless and smooth.”
Since the beginning of 2021, our team and our partners have met on more than 20 occasions synthesizing the data from the Summits and coming up with strategies to continue to build a community of stakeholders across the province. Moving forward, we will continue to disseminate learnings from the Project through knowledge transfer activities (e.g. publications and presentations) and maintain key project materials on two websites: www.bcacdi.org/navigation-project; and https://www.bcchr.ca/navigationproject. Members of the team are developing a web-based resource useful to people engaged in family support-navigational work across BC.
Some future goals include creating a list of navigational-type services and resources to share, developing closer connections with existing provincial resources, and hosting more regional meetings for navigators.
