The lived experiences of individuals with Tourette syndrome following anterior-medial globus pallidus internus deep brain stimulation: an interpretive phenomenological analysis.

Abstract

Tourette syndrome is a debilitating neurodevelopmental disorder. Despite the recent increase in the use of deep brain stimulation for the treatment of refractory Tourette syndrome, few qualitative studies have explored the post-surgical experiences of individuals. This research aimed to explore the lived experience of individuals who underwent deep brain stimulation for Tourette syndrome. This qualitative study was informed by the phenomenological design. Semi-structured interviews were conducted with the first cohort of five individuals to have undergone anterior-medial globus pallidus internus deep brain stimulation in South Africa. Interpretative phenomenological analysis was utilised to analyse the data. Four key themes were identified: (1) Battle with Tourette syndrome; (2) Temporal journey with deep brain stimulation; (3) Transformation: (Re)constructing the self in context after deep brain stimulation; and (4) Fusion: brain, technology and me. Living with Tourette syndrome was described by the participants as a fight for control, with symptoms having profound effects on family and social relationships. Identity reconstruction following surgery was complex, but treatment led to a change in social interactions and personal growth. Improvement was not immediate but rather a gradual process to find optimal settings. Most participants managed to integrate the device successfully into their identity.