Exploring Stakeholder Service Navigation Needs for Children with Developmental and Mental Health Diagnoses

Abstract

Objective: Service navigation programs are necessary for children with neurodevelopmental and/or mental health diagnoses to facilitate access to specialized therapies, social services, and community programs, especially those who are socially and economically marginalized. Few studies have included diverse stakeholders in the development and implementation of such programs in resource-limited settings. In this qualitative formative study, we aimed to explore stakeholder experiences after the implementation of a pilot service navigation program in resource-limited settings and identify the perceived elements of an effective service navigator, to develop a revised service navigation program for this patient population.

Methods: A novel navigation pilot program was implemented in an urban inner-city setting. Using phenomenology as a methodology, we conducted qualitative in-depth interviews with patient caregivers, pediatricians, allied health staff, clinic administrators, and the patient navigator. Data were analyzed within and across stakeholder groups using thematic analysis and supported by group discussion.

Results: Twenty-five stakeholders participated. All stakeholders reported challenges with accessing services before the implementation of the navigation program. Caregivers expressed frustration navigating a fragmented health care system, while providers felt limited by time and knowledge. The navigator's role was described as multifaceted: finding and completing applications for funding and programs, offering emotional support, liaising between physicians and patients, and advocating with schools and agencies. Based on stakeholder input, a revised service navigation model of care is proposed.

Conclusion: Caregivers and providers face immense barriers trying to help children with mental health and developmental diagnoses access necessary services and funding. Service navigation programs can be effectively embedded within pediatric clinical teams to improve access to required services for this patient population.