| Landau-Kleffner syndrome (LKS) is a rare childhood disorder that is often misdiagnosed as autism or childhood psychosis because of overlapping symptom presentation. Favorable prognoses in LKS depend on early diagnosis and treatment. While much is known about the clinical basis for LKS diagnosis, little is known about parents' lived experience with LKS. To address that gap, the purpose of this study was to understand the impact of the parent's lived experiences with this process. Using a phenomenological approach and the medical model as a conceptual framework, semistructured interviews were conducted with 7 parents of children diagnosed with LKS. Transcripts were coded, categorized, and then clustered into themes to describe the diagnostic process of children with LKS as experienced by their parents. From the parent's perspective, decreased LKS awareness within the medical community posed the greatest barrier to diagnosis. Lack of access to educational resources delayed diagnosis by hampering the parents' ability to effectively communicate their concerns to doctors. The delay in diagnosis resulted from physicians' inability to determine the diagnostic pathway because of unfamiliarity with LKS symptoms. Financial barriers were also present in the form of out-of-pocket costs for insurance plans with better access to services and providers. Parents were forced into the critical role of advocates in order to overcome these obstacles to prompt LKS diagnosis. These findings contribute to the existing literature by identifying barriers that prevent doctors from diagnosing LKS and informing initiatives aimed at improving doctors' ability to expedite LKS diagnosis. This awareness among physicians will decrease the social and economic burden of autism by improving the prognosis for children with LKS who would otherwise be diagnosed as autistic. |
