Clinician, caregiver and patient perspectives of the continuum of care for autism

Abstract

Autism spectrum disorder (ASD) is a complex, multi-faceted diagnosis. The research team sought to understand ASD through perspectives of stakeholder groups related to barriers in services for individuals with ASD. Stakeholders were recruited to participate in focus groups including patients with ASD, caregivers, health care providers, education specialists and insurance providers. Transcripts from each focus group were coded and themed using a systematic qualitative research methodology. Four themes emerged: burden of care; one size does not fit all; the need is more than the system supports; and coordination and centralization of services is the ideal but seems impossible with the current complexity. The research team now has clearer vision of the challenges of ASD to design a collaborative care model.