I’ll wear this as a badge of honour because it’s made me better’: Illness, self-concept and device embodiment in DBS for treatment-resistant depression

BACKGROUND: Numerous research trials of deep brain stimulation (DBS) for treatment- resistant depression(TRD) have been conducted. While the efficacy and safety of DBS continues to be investigated, with mixed results, studies examining patient and family lived experiences remain absent. Concerns have been voiced about the potential for DBS to create changes inpatients’ personality and personal identity (Glannon 2009; Schechtman 2010); however, others suggest thisis the intention of psychiatric DBS (Synofzik and Schlaepfer 2008). Qualitative studies with patients who have undergone DBS for other clinical indications have revealed important insights into how the intervention impacts patients’ perceptions of themselves, their bodies and relationships (de Haan et al. 2015; Schupbach and Agid € 2008). These complex and highly nuanced psychosocial experiences are not captured by psychopathology and functional scales used in clinical trials, but can have substantial implications for patient and caregiver wellbeing. Therefore, the aim of this study was to qualitatively examine how DBS for TRD impacts patient personality, self and relationships, from the perspective of both patients and caregivers as they prepare and adjust to life with DBS.

METHOD: A prospective qualitative design was used. Participants were six patients and five caregivers(spouses, family). Patients were enrolled in a clinical trial of DBS of the bed nucleus of the stria terminalis. Semi-structured interviews were conducted with participants before DBS-implantation and 9-months after stimulation initiation. The 21 interviews were thematically analyzed.

RESULTS: Three primary themes identified during analysis were: (a) impact of mental illness and treatment on self-concept; (b) device embodiment, and (c) relationships and connection. Severe refractory depression had profoundly impacted who patients were, how they viewed themselves, and the quality and functioning of their relationships. Patients who benefited from DBS felt reconnected with their pre-morbid self, yet still far from their ideal self. Caregivers reported familiar elements of their loved-one reemerging, but noted a persistence of qualities established during mental illness. While reductions in depression were broadly beneficial for relationships, the process of adjusting relationship dynamics created new challenges. All patients reported recharging difficulties and challenges adapting to the device.

CONCLUSION:Therapeutic response to DBS is a gradual and complex process that involves an evolving self concept, adjusting relationship dynamics, and growing connection between body and device. This is the first qualitative study to provide in-depth insight into the lived experience of DBS for TRD. Narrative accounts should routinely be collected as they capture needs and priorities that can guide patient-centred approaches to DBS clinical interventions.