PANSdemonium: The Impact of Controversial Diagnoses on Caregiver Experiences

Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) is a debilitating illness that occurs in some children after an unspecified infection. Overnight, these children develop Obsessive Compulsive Disorder (OCD), depression, and arthritis. Many children with PANS cannot attend school, bathe, or even eat. Despite its severity, PANS is considered to be what Arthur Kleinman calls a “delegitimized illness,” as it is only a clinical diagnosis of exclusion, without pathognomonic biomarkers. This delegitimization has led many people to question its existence, including the medical system, which largely considers it an invalid illness. This thesis aims to answer the central question how the delegitimization of PANS impacts the experience of the caregivers of PANS children and hopes to posit potential solutions to legitimize PANS. To collect data about the lived experiences of PANS caregivers, 500 social media posts from self-identifying PANS caregivers were analyzed. In addition, six semi-structured interviews were conducted with mothers who identified as PANS caregivers. Data were analyzed for consistent themes related to delegitimization. This work identified three phases of medical delegitimization PANS caregivers experience: 1) rejection of illness, 2) acceptance of illness, rejection of PANS, and 3) acceptance of PANS, rejection of care. In all phases, the delegitimization of PANS exacerbated caregiver burden, preventing them from securing help for their child. The impact of medical delegitimization on social experience was also assessed. PANS as an illness itself appears to be definitionally highly extreme. PANS-specific caregiver burdens were then identified. They focused on caregivers perceiving loss of the child’s sense of self, lack of prognostication, and their perception of hyper self-regulation. Further, it was demonstrated how the delegitimization of PANS often made these PANS experiences worse. To conclude, this work then suggests a role for narrative medicine to alleviate current delegitimization-based caregiver burden. Narrative medicine may allow caregivers to provide shape to their experiences, create shared understanding with their communities, and inspire broader advocacy that would legitimize PANS. Through this, there may be the potential for PANS-related caregiver burden to see reprieve.