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Community General Pediatricians' Barriers to Providing Autism Spectrum Disorder Diagnoses: A Qualitative Study
Objectives: The objective of this study was to explore the perspectives of CGPs regarding their role in the system of ASD diagnoses using qualitative methods.
Methods: We performed a phenomenological qualitative study of CGPs’ experiences with cases of suspected ASD. Two groups of CGPs were sampled to provide maximal variation in perspectives: a group that had referred patients with suspected ASD for a subspecialist assessment, and a group that regularly attended ASD educational events. Interviews began with a discussion of a case study describing a child with features of ASD. Individual in-depth interviews were recorded and transcribed. Two investigators coded each interview. Thematic saturation was reached when two successive interviews did not generate new codes. Texts were analyzed using a grounded theory approach. A preliminary theoretical framework was developed, summarized and sent to participants with a request for feedback (member checking; currently in progress). Member feedback will be incorporated into the final theoretical framework.
Results: Eleven in-depth interviews were conducted (six males, five females; mean years in practice 17.1). Participants described three elements to the process of assessment: diagnostic determination, communication of the diagnosis, and management of the diagnosis. Each element contained potential barriers to assigning a diagnosis of ASD. Diagnostic determination was affected by patient factors (severity of presentation, age, gender, comorbidities, and the amount of stimulation in the environment), family factors (how the family relays the history), and physician factors (training, practice setup, access to informal expert consultation, access to other staff’s observations of the child, and interest in ASD). Family factors were essential considerations in the communication of the diagnosis. It was important that families know enough, but not too much, about ASD; families who knew too much were perceived to need an “expert” opinion. Participants felt a significant emotional burden and were very sensitive to the impact of the diagnosis. They felt ill equipped to deal with the fragmented service delivery system for ASD. Helping families to access services was time-consuming, poorly remunerated, and less satisfying than other areas of pediatric practice. A consistent theme in the interviews was the participants’ negative attributions toward cases of ASD, particularly as they related to interfacing with dysfunctional health systems factors.
Conclusions: Though CGPs are frequently consulted on cases of suspected ASD, they experience many barriers to making a diagnosis, leading to increased subspecialist referrals. Efforts to improve diagnostic capacity in this group must focus not only on diagnostic determination, but also on communicating the diagnosis and efficiently connecting families to resources. Health system factors contribute to negative attributions toward ASD, potentially creating stigma and disadvantaging children with ASD from accessing care at the community level.