Epistemic injustice: experience of family carers and the lived experience workforce

Objective: Epistemic injustice, a seemingly academic concept, is deeply connected to experiences of the family carer lived experience workforce. Epistemic Injustice occurs when an individual’s capacity to understand or hold knowledge is unfairly discounted. Through reflection, this personal narrative reveals the harms of devaluing knowledge, demonstrating how power imbalances result in the systemic silencing of family carers, supporters, and the lived experience workforce.Methods: A reflexive narrative enquiry was conducted into personal experiences as a carer and lived experience worker. Critical theory and Mad studies perspectives were utilised to examine knowledge devaluation, challenge power structures, and disrupt established institutions of knowledge.Findings: Epistemic injustice manifests through reductive assumptions and a lack of shared understanding. Family carers and the lived experience workforce encounter a devaluation of knowledge perpetuated by systemic flaws and entrenched societal structures, further compounded by the intersection of disability and distress.Discussion: Addressing epistemic injustice requires recognising biases and challenging power imbalances that persist under the guise of inclusion. The family carer workforce, grounded in lived expertise, is best positioned to lead future research. By employing non-traditional methods that reflect multiple ways of knowing, a strong foundation can form, fostering acceptance and deeper understanding of diverse knowledges.