CHHD Seed Grant: Developmental and Treatment Challenges of the New Childhood Epidemics: Family Illness Journeys with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS).” Investigators: Maria LaRusso and César Abadía (funded in 2019).
Recent decades have been characterized by a growing explosion of what has been called the “new childhood epidemics,” including a condition that is now known as Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS). PANS can be triggered by a range of infectious (bacterial, fungal and viral) and non-infectious agents (for example, metabolic conditions and environmental allergens and toxins found in the air, water sources and food supplies). The fact that this condition has been only recently recognized within the medical community raises concerns about the preparedness of pediatricians, other health care providers, schools and families to identify, seek proper care, and adequately treat children. The involvement of families has been important in illuminating how medical care and developmental challenges extend from the medical settings to schools, families and communities.
This ethnographic study of families with a child affected by PANS examines how mental health symptoms can be an expression of specific medical conditions rather than problems in brain neurochemistry or psychosocial functioning. We started by reviewing descriptions of symptoms and claims of causality and pathophysiology in clinical and research reports. Then, we conducted a systematic analysis of on-line PANS forums for families, and at conferences, we engaged in exchanges with families and researchers from the United States, England, Ireland, and Sweden. Lastly, we conducted in-depth semi-structured interviews (N=20, ~2.5 hours each) with parents of children affected by PANS in the U.S.
The sampling approach for interviews was theory-based and purposeful with particular attention to maximizing heterogeneity and variation. Interviews began by establishing a timeline utilizing “family illness journeys” as a main data gathering technique, an adaptation of Kleinman’s “illness narratives,” where personal experience and meaning making around the illness are merged with a detailed exploration of a) the family’s experience with the child’s symptoms, diagnosis, and treatment and b) the child’s development. Analysis of interview transcripts was conducted using inductive thematic analysis, with the codes and themes derived from the content of the data. Research meetings were held frequently to refine initial codes, followed by line-by-line coding conducted by a team of trained coders. As a final step, themes were identified and within-case and cross-case analyses conducted. The results of this project have already been presented at the 2021 meeting of the Society for Research in Child Development, and a UConn Human Rights seminar, as well as the CHHD seminar in spring 2021. Several journal articles and book chapters are in progress or under review.