An Empirical Study on the Application of the Burden of Normality to Patients Undergoing Deep Brain Stimulation for Parkinson's Disease

Autor: Kerstin Weber, Alessandra Canuto, Joao Flores Alves Dos Santos, Marc Baertschi, Nicolas Favez, Pierre R. Burkhard, Michalina Radomska, François Herrmann
Jazyk: angličtina
Rok vydání: 2019
Předmět:
Zdroj: Journal of Psychosocial Rehabilitation and Mental Health, Vol. 6 (2019) pp. 175-186
ISSN: 2198-963X
Popis: Psychosocial maladjustment frequently occurs following deep brain stimulation (DBS) in patients with Parkinson’s disease (PD). This paper aimed at investigating, for the first time with first-hand data, whether the burden of normality model (BoN) could adequately describe the manifestations and underlying dynamics of psychosocial maladjustment after DBS for PD. In a mixed experimental design including quantitative and qualitative data, 19 patients treated with DBS for PD were interviewed on their post-DBS lived experience with the Austin CEP Interview, a semi-structured instrument addressing all elements of the BoN. In addition, health-related quality of life was measured before surgery and at the time of interview with the Medical Outcome Study 36-Item Short Form Health Survey. All patients experienced clinical manifestations of psychosocial maladjustment as described in the BoN. Yet, there was a great interindividual heterogeneity in descriptions of the perceived course of the post-DBS life. Experiencing various types of symptoms was nevertheless associated with the perception of a less satisfying life after surgery. In addition, most patients had realistic expectations on the surgical outcome, and those with unrealistic or mixed expectations did not differ from other patients in terms of psychosocial maladjustment. The BoN accurately conceptualizes psychosocial maladjustment experienced by DBS patients with PD. However, no relationship was established between the nature of pre-operative expectations and BoN symptoms.
Databáze: OpenAIRE
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