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

PURPOSE: 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.

METHOD: 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.

RESULTS

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.

CONCLUSION

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.