Deep brain stimulation (DBS) has been used to treat over 200,000 individuals with various movement disorders, including Parkinson’s disease (PD), and is being trialled in psychiatric conditions such as major depressive disorder (MDD). Clinical research has consistently shown that DBS is effective in alleviating the motor symptoms of PD. However, a subset of patients appear to experience unanticipated psychosocial changes following DBS, including changes in personality, identity and interpersonal relationships. Little is known about these non-motor outcomes and how they impact patients and families. Narrative accounts of pre and post-surgical experiences are essential to better understand these changes and minimise the negative effects of DBS.

This prospective qualitative study investigated the experiences of key stakeholders including DBS patients, caregivers and clinicians. Findings suggest DBS has potential to restore features of pre-morbid personality and identity, but can introduce potentially problematic changes (e.g. increased irritability, impulsivity). Caregiver attendance at consultations is recommended for reporting problematic changes, as patient insight can be limited. Participants highlighted adaptive strategies and resources used to assist their adjustment to patient change (e.g. allied health involvement, carer respite, support groups). Results indicate the informed consent process and clinical management of personality change, in PD particularly, could be improved.