The experience of caregivers of patients affected by Parkinson's who have undergone deep brain stimulation

Background: Parkinson's is a neurodegenerative condition that has a critical impact on every aspect of the affected individual's life and also on their caregiver. A neurosurgery procedure called deep brain stimulation (DBS) has improved motor symptoms in some patients. DBS is one of the options offered to eligible candidates affected by Parkinson's; however, this pathway may cause both physical and psychological problems for patients and their caregivers. Aims: To explore the experiences of caregivers of patients with Parkinson's who have undergone DBS, to further understand their needs, and to identify possible mechanisms of future support. Methods: Qualitative semi-structured interviews have been conducted using an online platform with a convenience sample. Findings: Six themes and one subtheme were identified: suboptimal communication from the service provider; poor healthcare support that also increased the risk of the subtheme ‘burnout’; carers' feelings of invisibility; impact on the carer–patient relationship; personal sacrifices of caregivers; and social isolation. Conclusion: DBS impacts on the relationship between caregivers and patients. Carers require more information on post-DBS life from service providers, as well as education on the management of patients after DBS.