Stakeholder Validation of the Family Navigator Manual

Background: Parents of children with Autism Spectrum Disorder (ASD) experience significant barriers in the access and coordination of care. Families describe their experience with care systems as a “confusing maze”, in contrast with local and international policies that clearly stipulate the importance of tailored, continuous, and coordinated services across the lifespan. The Family Navigator model (FN), which we developed, responds to these unmet needs by supporting caregiver empowerment and care continuity during different transition periods, beginning at the post-diagnostic period. Thus far, we have developed the FN based on best available evidence on: Navigation efficacy in other health conditions, research about the experience of families in routine services, and an in-depth review of care policy. Taken together, we have incorporated the evidence into a manual we developed to define the FN, including role and functions of the family navigator.

Objectives: The current qualitative study took a participatory approach engaging stakeholders (community professionals who are involved in care coordination or navigation) to validate the FN manual. Prior to beginning a randomized controlled trial of the FN, we sought to validate the model to ensure that the navigator’s role and functions coincided with community stakeholders’ views of navigation in autism care and services. Both community professionals who take on the role of a navigator, regardless of their professional title, and decision makers involved in navigation, were invited to participate in the stakeholder validation. We developed a workgroup activity where experienced facilitators guided small group discussions about active ingredients of navigation, following a series of pre-specified open-ended questions.

Methods: 49 individuals participated in the stakeholder validation. Included were different professionals, (e.g. social workers, clinicians, and educational consultants) with an average of 10 years of experience working with families with ASD, from a variety of sectors (i.e., health and social services, education, and community organizations). Fives groups of 8-10 participants answered and discussed open-ended questions posed by the facilitator. Group discussion were audio-recorded on iPads, and later transcribed by a research assistant. Using NViVo.10, and with a grounded theory approach, the data was coded into emerging themes related to active ingredients of navigation. After the initial coding of the transcripts, themes were extracted and grouped into broader categories.

Results: Overall, emerging themes from the stakeholder validation suggested that presently, within care services, the professionals responsible for coordination of care for families (i.e., navigation): acts as a go-to person; has an active partnership with the family; is knowledgeable about ASD and the pathways for accessing associated services; facilitates communications and information exchange across different services; and coaches families to be their “own navigator.”

Conclusions: The themes derived from the stakeholder validation helped refine the role and functions of the Family Navigator within the FN manual. The next phase will consist of formally evaluating the FN model in a randomized control trial, while also continuing to engage stakeholders in order to ensure consideration of contextual aspects to implementation of the model within local care services and that knowledge generated leads to impact in the community.