The current scientific enquiry of deep brain stimulation (DBS) does not capture the breadth of DBS-induced changes to an individual's life. Considering that DBS is applied in severe and complex cases, it is ethically and clinically necessary to consider the patient perspective and personally relevant outcomes. This lived experience investigation of people with obsessive compulsive disorder (OCD) undergoing DBS aims to provide a comprehensive evaluation of DBS-induced effects associated with OCD psychopathology. Six patients and six carers completed semi-structured open-ended interviews. A blended approach of interpretative phenomenological, inductive, and thematic analysis techniques was employed. Profound psychopathological changes were expressed; individuals felt more alive, had improved cognitive affective control, greater engagement in the world, and were able to manage their OCD. Through suppression of the condition, self-constructs were able to re-emerge and develop. A framework describing the progression of phenomenological changes, and a theoretical model describing changes in the cognitive appraisal of intrusions influencing recovery are proposed. This is the first identified qualitative investigation of DBS-induced changes in psychiatric patients and carers. Findings have implications for patient education and recovery models of OCD, and scientific understanding of DBS effects.
Keywords: biopsychosocial; deep brain stimulation; dysfunctional beliefs; lived experiences; obsessive compulsive disorder; phenomenological changes; self-constructs.