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

Abstract

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.

IMPLICATIONS FOR REHABILITATION • Tourette syndrome is a complex disorder impacting physical, psychological and social functioning. • Deep brain stimulation is a neurotherapeutic treatment option for refractory Tourette syndrome, yet limited research is available on the lived experiences of individuals following deep brain stimulation. • Clinicians should provide comprehensive pre-operative counselling and neuropsychoeducation to patients and their families regarding the expectations, risks and psychosocial implications of deep brain stimulation. • They should provide continuous multidisciplinary patient management and psychological support to address adjustment challenges, optimise outcomes and monitor psychosocial well-being after surgery. • In addition, they need to adopt an integrated and individualised rehabilitation approach informed by multidisciplinary perspectives.