From silenced to central: A qualitative study re-positioning family carers as epistemic agents through the carer-inclusive restrictive practice reduction pathway (CIRP)

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This paper examines the experiences of family carers supporting their children and siblings with intellectual disabilities, autism, and co-occurring mental health conditions in, inpatient services. Carers’ relational knowledge of communication, sensory needs, and trauma histories is often excluded from care, reinforcing systemic power imbalances and legitimising coercive practices such as restraint and seclusion. Using four online community focus groups with twenty-seven carers, facilitated by lived experience co-researchers, thematic analysis revealed carers’ dual roles as relatives and advocates navigating institutional exclusion. Participants described how distress was misinterpreted and labelled as ‘ challenging behaviour ’, reinforcing institutional responses that perpetuated harm and cumulative relational trauma for both individuals and their families. Carers called for partnership, trauma-responsive cultures, and policy reform. In response, we propose the Carer-Inclusive Restrictive Practice Reduction (CIRP) Framework: a rights-based model embedding carer authority through recognition, reparation, reconnection, and reform to address epistemic injustice and advance collaborative, ethical mental health care.

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