“He’s Back so I’m Not Alone”: The Impact of Deep Brain Stimulation on Personality, Self, and Relationships in Parkinson’s Disease

Cassandra J. Thomson, Rebecca A. Segrave, Eric Racine, Narelle Warren, Dominic Thyagarajan, Adrian Carter

Research output: Contribution to journalArticleResearchpeer-review

25 Citations (Scopus)


Deep brain stimulation (DBS) for Parkinson’s disease successfully alleviates motor symptoms, but unanticipated changes in personality, self, and relationships can occur. Little is known about how these nonmotor outcomes affect patients and families. We prospectively examined the experience and meaning of DBS-related changes in personality and self for patients and caregivers. In-depth, semi-structured interviews were conducted with 22 participants (11 patient–caregiver dyads) before and 9 months after DBS and analyzed using thematic analysis. We identified three themes present prior to DBS that reflected a time of anticipation, while three themes present after DBS reflected a process of adjustment. Participants noted both positive and negative personality changes, with some, but not all, attributing them to the stimulation. The risk of stimulation-related personality change should be weighed against the procedure’s motor benefits and considered in the context of disease- and medication-related personality changes. Clinical implications including perioperative education and follow-up management are discussed.

Original languageEnglish
Pages (from-to)2217-2233
Number of pages17
JournalQualitative Health Research
Issue number14
Publication statusPublished - Dec 2020


  • caregivers
  • deep brain stimulation
  • identity
  • illness experience
  • interviews
  • Parkinson’s disease
  • personality
  • qualitative
  • qualitative analysis
  • relationships
  • self
  • semistructured
  • South Eastern Australia
  • thematic analysis

Cite this