Understanding the lived experiences of Parkinson's disease and deep brain stimulation (DBS) through occupational changes

Abstract

Background: Deep brain stimulation (DBS), a surgically based treatment for people living with Parkinson's disease (PD), can result in a significant improvement of motor symptoms. However, the broader impact of DBS and the changes it creates are not well understood. Greater understanding of the experiences and needs related to DBS would enable development of relevant outcome measures and supports. Objectives: To explore the lived experiences of people undergoing DBS for Parkinson's disease. Methods: A descriptive phenomenological study was undertaken exploring experiences, perspectives and outcomes with key stakeholders. Semi-structured, audiotaped interviews were undertaken with people with PD who have had DBS, their family members and health professionals across four states and territories in Australia. Results: Perspectives and experiences of 14 people with PD undergoing DBS, 10 family members and 11 health professionals were analysed. Occupations emerged as a key aspect throughout the DBS experience. Two major themes captured the role of occupation in relation to DBS: Occupations as a barometer, where occupational experiences and performances shaped people's understanding of their condition, the impact of treatments and their overall adjustment; and Shifting occupational identity where the life transition of DBS altered the occupational experiences of relationships, volition, roles and responsibilities of people with PD and their family members. Conclusion: Occupational experiences and changes served as an important way for people with PD and their families to understand and communicate their experiences of PD and related treatments. There is an identified need for outcome measures and clinical education and interventions to reflect this.

Real-life experiences of patients with Parkinson's disease

“…DBS is considered one of the factors promoting hope to counteract the progressive impact and decline associated with PD (Haahr et al, 2011;Mathers et al, 2016). On the other hand, patients experience behaviour changes that are more difficult than they had prepared for prior to the DBS (Liddle et al, 2018). Sheehy et al (2016) declared that patients participating in an exercise programme witnessed their teammates with more advanced symptoms and they became role models and examples of coping and succeeding.…”

“…It is a neurological disorder with evolving layers of complexity (Kalia and Lang, 2015). Current pharmacological and surgical treatments are aimed at symptom management and slowing disease progress (Liddle et al, 2018). PD is stressful for patients since they experience changes in physical mobility and general independence, which have an impact on social activities, work, and relationships (Rod et al, 2013).…”

The Memory-Modifying Potential of Optogenetics and the Need for Neuroethics

“…Although both of these examples come from studies that employed the molecular form of memory modification, it can be assumed that they may also apply to optogenetics. Some insights into potential and unexpected side effects can be also gained from reports from DBS patients who experienced changes in their behavior, personalities, and identities due to neuromodulation treatment [80][81][82][83][84].…”

Pattern theory of self and situating moral aspects: the need to include authenticity, autonomy and responsibility in understanding the effects of deep brain stimulation

“…1 See e.g., Baylis, 2013;Clausen, 2009;Gilbert, 2018;Glannon, 2014a and b;Hildt, 2006;Merkel et al, 2007;Nyholm & O'Neill, 2016;Schechtman, 2010;Schermer, 2011;Synofzik & Schlaepfer, 2008;Witt et al, 2013. 2 See e.g., Bhargava & Doshi, 2008;Goethals et al, 2008;Leentjens et al, 2004;Mantione et al, 2014. 3 See Agid et al, 2006;de Haan et al, 2013de Haan et al, , 2015Gilbert et al, 2017;Gilbert & Viaña, 2018;Gilbert, 2018;Haahr et al, 2013;Hariz et al, 2011;Houeto, 2002;Lewis et al, 2015;Liddle et al, 2018;Mathers et al, 2016;Pham et al, 2015;Scaratti et al, 2020;Schüpbach et al, 2006;Smeets et al, 2018;Thomson et al, 2019Thomson et al, , 2020 Though see Gilbert et al (2018a and b), who examined more than 1500 articles to investigate the scientific evidence regarding DBS-induced changes on the personality, and suggests that the neuroethical debate on the putative effects of DBS relies on limited empirical evidence. 5 For a discussion of this point see e.g., Mecacci and Haselager, 2014.…”