Epistemic Injustice in the Context of Contested Diagnoses

Navigating healthcare with a contested diagnosis, such as Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS), is fraught with challenges for both patients and their families. PANS is a newly recognized condition marked by a sudden onset of neuropsychiatric symptoms, yet its etiology and treatment remain contentious. This chapter explores how children with PANS and their primary caregivers (parents, in this study) in Sweden seek, acquire, and share knowledge about the condition amidst skepticism and systemic barriers. Using qualitative interviews, this chapter examines the epistemic injustice children and parents face; this includes testimonial injustice, where one&s;s credibility as a knower is undermined, and hermeneutical injustice, which stems from gaps in medical understanding. The emotional and practical consequences of these injustices are analyzed alongside structural contributors like medical hierarchies and knowledge constraints. The findings emphasize a need for person-centered care that values patients and caregivers as essential knowledge holders. The chapter ends by discussing social workers’ critical roles in fostering epistemic justice in health care.