Decision Makers Perceptions on the Current State of the Family Navigator Project in Quebec

Background: Families with an autistic child often experience stress as a result of the prolonged waiting period in accessing services in many communities. Our previous research in the Canadian context has shown that families experience significant barriers to access and coordinate care for their child, which can increase the burden on caregivers and prevent the delivery of necessary intervention services for their child. Navigation is defined as a professional-led model aiming to facilitate continuity of care and promote patient empowerment. Access to a Family Navigator is one of the policy priorities articulated as a strategy to address challenges in care coordination. However, there are currently no validated models for autism nor information on the potential active ingredients for effective delivery.

Objectives: To describe the perceptions of decision-makers on the Family Navigator model and the current and potential role of the Family Navigator strategy within public sector services.

Methods: Key informant open-ended interviews with decision makers within a large health care network in the province of Quebec (serving 37,4400 people). Of 22 decision makers, 8 were identified from the organizational chart of the health and social services network. They were included because their areas of involvement covered physical, intellectual deficiency, autism, mental health or youth protection. Interviews were audio-recorded and transcribed verbatim. Thematic analysis of interview transcripts was conducted by two independent reviewers using NVivo11.

Results: Emerging themes suggest diverging perspectives and experiences of Family Navigator functions across different levels of services (primary vs secondary vs specialist).This includes (a) the professional background of a Navigator, e.g., social worker vs educator, (b) whether their involvement is episodic (i.e. during transition periods and crisis), or continuous (addressing the various needs as they emerge), and (c) their initial point of contact (i.e., around time of diagnosis vs. in primary care around the time of initial concerns). In terms of current implementation of navigation functions in health and social services, decision makers identified duplication in the functions in first and second line services which can be addressed by increasing communication and collaboration between care teams. Finally, beyond public sector health and social services, the role of the community organizations was highlighted as a potential facilitator of navigation functions.

Conclusions: Decision-makers need a more concrete definition of the role and functions of Family Navigators in health and social services. Navigation is perceived as an essential strategy in supporting families of autistic children however the importance of having a Navigator assigned to one person early on across different levels of services is crucial for its beneficial outcomes. Future directions may include adaptation of evidence-based models from other areas of research into the autism system of care.