“New normal”: what’s the experience of patient/caregiver/ physiotherapist after deep brain stimulation in Parkinson’s disease: qualitative study

• Autor(a) principal: Patriarca, Maria Abrunhosa
• Data de Publicação: 2023
• Tipo de documento: Dissertação
• Idioma: por
• Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
• Texto Completo: http://hdl.handle.net/10400.26/46569
• topic: Parkinson’s; Physiotherapy; Deep brain stimulation; Patient; Caregiver; Fisioterapia; DBS; Doente; Cuidadores

Background: PD is the second most common neurodegenerative disease. In Portugal, it’s estimated that the prevalence is 180/100,000 habitants. In patients with positive responses to medication but with motor complications, DBS reveals to be an effective strategy in selected patients. DBS has shown benefits to QoL and to the drastic reduction of medication, although it has some negative effects, such as increased axial symptoms and risk of falling. The literature has shown that PD candidates for DBS who had excessively high expectations experienced psychological distress and general disappointment with the results of DBS. The studies show that caregivers remain with higher levels of burden after surgery. Physiotherapy has shown evidence in the treatment of PD patients, but not in those with DBS. Objectives: To get a better understanding of the new reality of PD patients that had DBS through the experiences of the individuals, the caregivers, and physiotherapists, as well as the role of physiotherapy in this context. Methods: Participants were recruited through APDPk and other contacts. Semi- structured in-depth audio/video record interviews were conducted. A qualitative content analysis was used to identify salient themes from verbatim transcripts. Results: A total of 30 participants was interviewed (12 PD patients; 10 caregivers; 8 physiotherapists). Four themes were derived: (1) The Old Me; (2) The Turning Point; (3) The New Normal; (4) Physiotherapy plus DBS. Conclusions: Patients experience diverse benefits from DBS, such as a feeling of normality. Although they reported improvements in motor symptoms, independence in ADL, and QoL, caregivers felt burden of caring for their family members. Expectations seem to play a role in the perceptions of the outcomes of DBS and should be accessed previously. Physiotherapists seem to be important clinicians when it comes to help to adjust patients’ expectations of DBS, especially related to motor symptoms and functionality.